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Why I am Disabled and Pro Choice

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In Ireland, the debate around the Eighth Amendment is well underway. With a date for the Referendum to be confirmed, it is expected to take place May or June of 2018. This week we explore the issues around the Eighth Amendment and why people with a disability in Ireland need access to free, safe and legal abortion.

Tactics are getting dirty, with “pro-life” groups buying domains that appear to be websites about repealing the Eighth. In actual fact, the sites direct people to a pro-life site. News sources reveal that Ireland’s main anti-abortion group has hired a company that has worked with Donald Trump and the US pro-gun lobby to help implement its referendum strategy.

The Irish Times also revealed that an anti-abortion group has hired a political consultancy which has been linked to controversial aspects of the Brexit Leave campaign. The Pro-Life Campaign has, of course, refused to confirm if it has hired Kanto.

“Pro-Life has now hired uCampaign to set up its “Love Both” app. UCampaign was founded by Thomas Peters, a conservative Catholic US blogger. He has created apps to promote the president’s “America First” strategy as well as for the unsuccessful campaign against same-sex marriage in Australia, the UK Conservative Party, the Vote Leave Brexit campaign, the US National Rifle Association, for Ted Cruz and Rand Paul, the Republican politicians, and for American anti-abortion groups.”-The Sunday Times

We all know how nasty things got during those events last year so it is making me anxious about what is to come over the next four-five months.

People with disabilities should not be used for emotional blackmail

One argument that is being constantly used is that disabled people will be wiped out from existence should the Eighth be repealed and legislation brought in to decriminalise abortion.

Recently, I had the displeasure of arguing with a man who had this notion. His proof of this happening? A video of an American man with Down Syndrome. In this video, the man says that he lives an amazing life, given amazing opportunities and that those with Down Syndrome shouldn’t be looked down upon. The ironic thing is that this video was used to prove people with Down Syndrome are being wiped out. Yet, in America where abortion is legal, 6,000 babies with Down Syndrome are born each year (CDC statistic). Two babies are born with the condition each day in the UK. It is downright patronising and condescending to assume a person would have aborted their disabled child if they had access to abortion. Even in countries where abortion is liberally legal, the rates of abortion as a whole are very low. Most disabilities are not diagnosed until about 20 weeks into a pregnancy. Should the legislation follow the Citizen’s Assembly recommendations, no foetus with a non-life-threatening (known) disability will be aborted legally. The foetus would have to be diagnosed with a fatal abnormality to allow for later term abortions (after 12 weeks).

Iceland

People often refer to Iceland being Down Syndrome free. Here’s what Hulda Hjartardóttir, chief of obstetrics at Iceland’s National University Hospital had to say on the matter:

“The truth is that one-third of mothers-to-be choose not to have more [pre-natal] tests done after the first indication of Down Syndrome. These women want to continue their pregnancies even with the increased chance of Down [Syndrome]. [Also], 80 to 85 percent of [pregnant] women choose to have the screening, so there are 15 to 20 percent who don’t. Those women don’t want the information. Of the women who have the screening and get results that point to increased risk [of Down Syndrome] about 75 to 80 percent get further tests done but 20 to 25 percent choose not to.”

Dr. Hjartardóttir also said that in cases of prenatal Down Syndrome diagnosis women and parents are offered the opportunity to meet with doctors and nurses who work with people with Down Syndrome. Parents are also offered the opportunity to meet the parents of those who have Down Syndrome.

I have really no idea why the pro-life debaters insist on using people with Down Syndrome to further their agenda. I don’t know why anyone would use people with any disability for this debate in this manner. Perhaps it’s because we are seen as needing to be protected. But, we don’t. We want to be treated like everyone else and we want equal rights. We are not pawns in anyone’s game.

Earlier this week, CEO of Down Syndrome Ireland, Gary Owens responded to the use of Down Syndrome in the pro-life literature. He respectfully asked that people with Down Syndrome not be used as political footballs in the run-up to the Referendum. He stated that it was disrespectful to those living and caring for those with Down Syndrome, or any disability for that matter.

And yet, just yesterday, this was posted on Twitter:

https://twitter.com/johndwalsh/status/957608403756568576

Most people with disabilities are normal people who live fairly normal lives. They have children, jobs, they’re married and yes, they even have….*whispers* sex! I know, right?!

The point is that people with disabilities need reproductive rights too. We need to be allowed have a say over what happens to our bodies in pregnancy and during birth. We need access to free, safe and legal abortion.

As someone who regularly leaves their country for access to medical treatment, I can empathise with the nine women who leave Ireland daily to access abortion. I too have to scramble to find thousands to fund the trip. I too often feel isolated and let down by my Government who deny me and my children basic health care.

Travelling abroad for an abortion

Travelling for tests is exhausting, causes a flare up of all my symptoms and leaves me in bed for days and days. Sometimes my condition progresses after travel and stress. I couldn’t imagine how bad off I’d be if I’d have to travel for a procedure, have to travel back the same day and recover from something like an abortion. I wouldn’t be out of bed for weeks. My children wouldn’t have their mother to play with, to feed from. With the risk of complications and even death in any surgery, I may have, having to leave before I had time to recover some bit for the flight home could leave my kids motherless. Like all the rest of my medical care, abortion needs to be accessible in my own country.

If a person with a disability has mobility issues they may need to put things in place to help them get to and from the airport, to the hotel and clinic. This takes away their privacy in order to access an abortion abroad (which is a constitutional right).

Financing an abortion

I haven’t been able to work outside of the home in six years. My income is no more than a couple of hundred Euro a week on Disability Allowance. My husband is on Carer’s Allowance. Between the two of us, gathering enough money to travel to the UK, book a hotel and the abortion would be impossible. Sure, we have friends and family who could help us out but, not everybody does. Not everyone has a partner to help through the process of abortion. Not everybody has a support system going through an abortion.

Pregnancy is a risk to health

I take precautions in preventing pregnancy but, nothing is 100% safe. Sometimes one of those suckers gets through and throws a spanner into the works. If I found out I was pregnant tomorrow, I would have to access abortion, no question.

During my second pregnancy back in 2014, I was wheelchair bound thanks to severe Symphysis Pubis Dysfunction caused by my Ehlers Danlos Syndrome. I was in constant pain with my dislocated pelvis. You’d think I’d have been used to the pain since my joints dislocate on a regular basis but ask any woman who has suffered from the condition and they’d tell you it’s like being kicked in the vagina with every step you take. By five weeks I was in the wheelchair and often forced myself to use my special crutches so my muscles wouldn’t waste away.

Then there was the horrific ordeal of hemorrhaging. I lost just under half of my blood volume., in and out of consciousness and when I was awake, I was vomiting.  My baby could not be in my arms for the first couple of hours of her life as I was so out of it. People with EDS are at risk of this, I knew that at the time but my first pregnancy was so uneventful, I (naively) figured I’d be alright.

They were calling for blood but luckily, they stopped the bleeding just in time. We can not risk that happening again. I can not risk my life and leave the two children I have without a mother.

I worked very hard to get out of my wheelchair. Even though my determination was strong, I still have to use it if I will be out of the house for an extended period of time. If I were to get pregnant again (never mind the birth bit) I won’t get out of the chair again.

A pro-lifer once told me if I were to get pregnant that I could simply “get induced early”. The problem with that scenario is that pregnancy is what disables me. Remember; five weeks into my pregnancy I was in a wheelchair. I wouldn’t make it to 24 weeks.

It is down to each person to assess the risk of being pregnant. I knew the risks of pregnancy with EDS and decided to go ahead in my second pregnancy. But, if I knew then, what I know now, I don’t know if I would have gone ahead with either of my pregnancies. I love my children to death and they make life with disability worth living but I have been left more disabled and mentally scarred from my experiences during pregnancy and birth.

Continuity of care

There is none, simply. There is no contact between a patient’s medical team in Ireland and the team carrying out the abortion in the UK. Which means the gynaecologist/OBGYN may not have all the information they need to properly care for their patient. Since there are thousands of disabilities and even more symptoms and complications that can arise, it would be hard to know of what to be cautious of. Medical history is very important, especially when it comes to surgery. For example, people with Ehlers Danlos Syndrome metabolise drugs differently to the average person.

The issues go on and complications are not exclusive to Ehlers Danlos Syndrome. So, by the time a person has gathered the funds and have organised a trip out of the country to procure an abortion, they may have passed the point where they can have an abortion through the use of the pill, mifepristone. They will then instead have to undergo a surgical abortion.

Without a knowledge and background from a patient’s multidisciplinary team, things can get dangerous. However, should abortion be allowed in Ireland, teams could communicate (not that Irish doctors know a great deal about my condition) and put safeguards into place to prevent any risks to my health and life.

Sadly, there is also no continuity of care when a person travels for an abortion due to a Fatal Foetal Abnormality.

Disability and Abortion rights poster
Credit: Disabled People for Choice

Sterilisation and celibacy

In the comment sections of online media outlets, you can be guaranteed to find at least one comment telling women to “just keep their legs closed” or to “get their tubes tied”. If it were only that easy! Women and trans men frequently ask to have their tubes tied or to have the whole lot removed. But, again, we can’t be trusted with our own bodies. It is incredibly difficult to get a tubal ligation in this country under a certain age or before you have a certain amount of children. Women with no children and who have no desire to be parents are often told “You just haven’t met the right man, yet” or “what if it doesn’t work out with your husband and you want to have children with someone else?” Do people honestly think we haven’t thought of all these scenarios before making such a big decision?

According to ongoing research conducted by Deirdre Duffy (Manchester Metropolitan University) and Mairéad Enright (Birmingham Law School), the main reason women are denied tubal ligation in Ireland is because of doctor’s own moral or religious beliefs.

Again, using myself as an example, my medical team will not allow me to have any unnecessary surgeries, only if it’s an emergency. This is because of my fragile connective tissue, one nick with a 10 blade (scalpel), in the wrong place and I could bleed out. The risk just isn’t worth it.

As for the whole “keep your legs closed” spiel, it’s such an unrealistic and ridiculous argument. You are against the idea of abortion and yet, your solution is to just have no pregnancies at all? No children to ever be born? Let’s face it, humans need sex. We are social creatures that need affection. We have needs and there is no shame in admitting we are sexual beings-even people with a disability!

I think the Catholic idea of people (and I mean women) who have sex just for fun is sinful is still very much apparent in Irish society. A woman could have a one night stand, take all the precautions in the world and end up pregnant. That’s not allowed though. She would be accused of using abortion as a form of contraception by those who are ignorant of how contraception actually works. Let’s face it, she would be branded a slut by many in society. Yet, over half of the people who travel for abortion are already parents. No name calling for them (well, except murderer by pro-lifers). From what I gather, the pro-life side doesn’t have an issue with exporting abortion to the UK. Otherwise, they’d be asking to repeal the 13th amendment that gives us the right to travel. Many don’t even have an issue with abortion in cases of rape incest or FFA. So, it seems people have an issue with how the foetus was conceived.

Genetics

It’s not a very common story, but one that isn’t unheard of where two people meet, they fall in love and get pregnant. Ten or so months later, they welcome their very wanted child to the world only to discover the baby has Cystic Fibrosis. Yes, the disease is incredibly rare but Ireland has the highest rate of it in the world. Newborn bloodspot screening for Cystic Fibrosis commenced in Ireland on 1st July 2011. All newborn children in Ireland are now tested for CF as part of the existing newborn bloodspot programme. Newborn blood spot screening is usually known as the ‘heel-prick test’. The test only covers the most common forms of CF.

Which means anybody over the age of seven (who don’t know of a family history of CF) won’t know if they carry the CF gene. Before 2011 any couple who didn’t know they had the gene for CF found out tragically when their child was diagnosed with the condition. Many couples were petrified of getting pregnant again and the 25% chance subsequent children would inherit the condition.

Many people who have genetic conditions choose not to have children or go ahead with a pregnancy and some do. Whether someone takes the gamble like we did or decides to not go ahead with a pregnancy, they should be supported in whatever decision they do make. You don’t have to agree with someone to support them. You accept their choices as they do not affect your life. That is the true meaning of “love both”.

Future generations

I have an almost three-year-old daughter. She inherited EDS from me. By age two she has suffered four dislocations. When puberty begins, her condition will worsen. Like me, she’ll be high risk if she was to ever get pregnant. At such a young age she is already showing signs that her condition will be worse than what I have experienced. I worry what a pregnancy would do to her. Whatever she decides, I will support but I want her to at least have a choice. I want her to be able to make a decision, I want her to be able to talk about her decision should she choose abortion. I don’t want her to feel ashamed and to feel as though she is doing something wrong. Nobody has an abortion on a whim or without thought. Nobody puts themselves through something like that for a laugh.

“You wouldn’t be here if it hadn’t been for the Eighth Amendment”

I am adopted. Thanks to good old Catholic Ireland, I was removed from my birth mother who was young and vulnerable. Yes, I was placed with a good family and had a pretty good childhood but, the adoption scarred me. I honestly don’t think I would have been aborted if my parents had been given the option. I was wanted but society wouldn’t allow it. If my parents had taken the boat to England? I wouldn’t be here and I would be none the wiser. Why? Because I would have been a foetus.

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children, chronic illness, chronic pain, family, Guest Posts, health, mental health, parenting, tips

Seven Mental Health Tips for Mom

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Are you a new mama with under-eye bags that could rival a Louis Vuitton? There are so many hats we wear as humans in this rollercoaster society. As adults, we have endless streams of responsibilities and stress. No doubt these factors can have an effect on your mental health at some point in your life.

As a mother, external stress factors affect you. In addition, you are also responsible for keeping a whole separate human.

It is not surprising that stress and anxiety levels become elevated after the birth of a child. What steps can we take to reassert authority over our overworked stress responders?

Check out these seven ideas for managing stress and cultivating stability. These tips can be useful for in your role as caregiver and primary support system. These tips apply to any parent who may be struggling with their mental health.

Don’t Go It Alone

Talk about what you are feeling. One study conducted by Dr. Michael O’Hara, Ph.D. investigated external influence and postpartum depression. It’s reported that women are more likely to suffer from Postpartum depression as a result of not feeling supported by their partner after delivery.

Whether it be a spouse, friend, or support group, reaching out and sharing your emotional journey will not only ease your mind and soul, it will also allow those closest to you to better understand your emotional situation. Many people find talking about mental issues uncomfortable, but remember; that mental health issues are not uncommon in mothers. You are not alone.

Tip from the Zebra Mom:

There are great Facebook groups for mothers with Chronic Illnesses. Contact The Zebra Mom Facebook page for a list of helpful groups. Having an online ‘village’ can do wonders for a mom who can’t get to support group meetings. It is also comforting to know there are others out there who know exactly how you feel. It is far from unusual for mothers with physical illnesses to struggle with their mental health.

Yoga

Yoga has earned a powerful reputation in the healthy living sphere, as a cure-all for both physical and mental health. There is a multitude of ways this practice could benefit you. While yoga alone will not serve as a blanket treatment, there is research that shows the benefits of a regular practice to be tangible. Preethi Kandhalu’s article on the physical and psychological effects of cortisol suggests that the levels of cortisol in people with Major Depressive Disorder declined after three months of practicing yoga, pointing to the conclusion that yoga can indeed encourage good mental health.

Tip from the Zebra Mom:

Hypermobile Mama, please talk to your physiotherapist when considering Yoga and Pilates. These practices may cause hyperextension of the joints which can increase laxity and/or cause dislocations/subluxations.

Meditation

Finally shedding a reputation of hippy-dippy voodoo, the neurological data behind meditation and positive physical changes to the brain speak for itself. The brain is a muscle, and like other muscles in the body can strengthen with tools and exercises.  While many areas of the brain are active during meditation, data shows the significant difference in the hippocampus between meditators and non-meditators. The hippocampus affects stress and emotional responses. These sorts of physical changes can have a positive effect on stress levels. There are many ways to begin a meditation practice. Explore guided online tracks or meditation apps like Headspace. You could even practice an individual exploration of a particular mantra or affirmation.

Tip from The Zebra Mom:

Meditation is also useful as a way of pain management. This study shows there is some evidence for the existence of a non-opioid process in the brain to reduce pain through mindfulness meditation.

Acupuncture

The vision of becoming a pincushion may be off-putting. Yet, the ancient practice of acupuncture has stood the test of time as a method of physical and mental release. A new study explores the science behind what exactly is happening in the body to relieve anxiety.

Tip from the Zebra Mom:

Some study shows that acupuncture may be effective in relieving chronic pain. A trained, certified professional should always be sought but only after you’ve spoken to your doctor.

Relax and look after your mental with

Get your Groove on

Music makes us feel. Whether it’s a favorite song in the car or soft background music, the link between the sound of music and the effect on our cognitive abilities and functions is a massive field of research. Instead of scrolling through your Instagram feed before you fall asleep, play some soothing tunes and let yourself drift.

Tip from the Zebra Mom:

Play music that inspires or motivates you. My own personal mood-boosting songs are Sia’s ‘Elastic Heart’ and Rudimental’s ‘Not giving in’. Blast them and sing them loud! Further research should arise, but there is some correlation between music and pain relief.

Make Sleep a Priority

Without an adequate amount of shut-eye, many other efforts at wellness are going to seem unmanageable. Implementing a regular yoga and meditation practice often leads to an improvement in the quality of sleep. There are further steps to ensure our bodies are getting enough rest. Explore alternative remedies such as aromatherapy. Using lavender or peppermint essential oil before bed can relax the central nervous system. This results in ease of physical aches, anxieties, and tension.

Tip from the Zebra Mom:

If you’re a new mom, you should consider co-sleeping with your baby.  When practiced safe way, this practice allows mom to get more sleep. Studies show breastfeeding moms who also co-sleep get more sleep than those who don’t. I know, that in the early days of being a new mom, co-sleeping allowed me to get a full night sleep. Studies also show that children who sleep close to their parents tend to be more content and sleep better. See Infant Sleep Information Source for information about how to practice safe sleeping. Furthermore, you will also find information on normal infant sleep patterns. See Infant Sleep Information Source 

Spend Time with Yourself

A little pampering goes a long way when it comes to affecting mood and sense of purpose. One study investigated the influence of self-esteem and optimism as measured factors before, during, and after pregnancy, with optimism associated with fewer symptoms of depression during pregnancy and up to six weeks postpartum, with self-esteem correlating with lower depression along with all points of the pregnancy. Cultivating self-love and existing as your best self can make it easier to radiate the same level of love outward.  This love can be for your children and also complete strangers.

Tip from the Zebra Mom:

A pamper session doesn’t have to involve leaving the house. As moms with Chronic Illness, we know it can take a lot of energy going anywhere. Run a bath, light some candles or paint your nails.  Even some online shopping can give you the pick-me-up you needed. Whatever makes you feel good; go for it.

About the Author

Guest post by Marcus Clarke BSc, MSc. from psysci.co. His blog focusses on psychology and science.

Marcus has Bachelors (Hons) in Psychology and a Masters in Health Psychology. Marcus has experience working in a Psychology department within the NHS. He is currently working in the health and social care sector. Marcus supports adults and children with learning disabilities.

You can contact Marcus via email marcus@psysci.co or twitter: @psysci_co_uk

If you would like to guest post on The Zebra Mom, email hello@thezebramom.com

 

 

 

 

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Awareness, chronic illness, chronic pain, disabiliy, Ehlers Danlos Syndrome, family, health, parenting, Rare Diseases, spoonies

The Eighth Amendment: How it affects People with Chronic Illnesses Part II

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The Eighth Amendment affects people who have the ability to become pregnant In Ireland.

The Eighth Amendment states that the foetus has the same rights as the person who is pregnant. Ireland and Malta are the last two European countries where abortion hasn’t been made legal. The Eighth Amendment was added to the Irish Constitution in 1983. It means that abortion services are unavailable in Ireland. Even in the case of fatal foetal abnormalities or when a woman becomes pregnant as a result of rape. Approximately 12 Irish people per day are forced to travel to the UK to have an abortion.

Last week we discussed how the Eighth Amendment affected women during pregnancy and birth. This week we are going to explore how the Eighth affects people who are sick and have the ability to become pregnant.

Fellow blogger, Cripple, Baby! has kindly allowed me to share her story. Catherine like me, has Ehlers Danlos Syndrome.

How the Eighth Amendment could have affected Catherine with Cancer:

For me, the Eighth Amendment brings to mind of when I was diagnosed with cancer, back in 2013.

No I was not pregnant, no I was not planning to become pregnant, and no I was not planning on having an abortion. Yet the tone was set for many a discussion around such subjects, the very minute I was diagnosed.

One might assume this conversation would take the form of discussing options for egg preservation, in case of future fertility problems. Although this was never mentioned really, only glossed over. A simple “I’m sure you’ll be ok” was all that was given in this respect.

My period was a good sign

Something I realised was vastly different from the experiences of UK cancer patients, through discussions on support forums. I can only assume such options aren’t granted free by the HSE, and perhaps some doctors just see it all as a bit “icky”? I really have no idea. In fairness, I never pushed the issue. The only guidance I was given with that side of things was the nurse whispering to me during chemotherapy inquiring about my periods, stating that a regular flow was a good sign at least.

No, this was not the route of the pregnancy conversation. The one and only topic was around what would happen if I became pregnant during my treatment. [pullquote]Of course I was advised to use all the contraception possible, to not purposely become pregnant during this time obviously, that would be insane. But as we all know, even with all the contraption in the world shit happens.[/pullquote]

In this scenario the woman has two choices (in other countries) continue the pregnancy, reduce your treatment (or not, but it would be advised) or plan a termination, in order to give yourself the best chance of survival. Neither option is easy. Yet women make these choices for themselves, all around the world, every single day. And we trust they know what is best for them. Neither case in this regard deserves judgement, they are and should be, case-by-case decisions made by the women themselves and fully supported by both medical staff and loved ones.

The hypothetical foetus

So when I was diagnosed with Hodgkin’s lymphoma in 2013, I was quickly informed of what would happen if I became pregnant. They would reduce the treatment in order to give the foetus the best chance of survival. At first this seems like just good advice, a reassurance that if needs be they will do what they can to help me. I am a young woman of child-bearing age, so it’s all relevant. But this mantra was repeated again and again during my treatment, by various medical care professionals. Many a conversation about saving the life of my hypothetical foetus. To get the point across that in this scenario, in this country, I would have no choice.

It’s something I’ve looked back on often. Sometimes with amusement, but mostly with dismay. It just makes me feel very uneasy. My life is more important than a hypothetical, or real, foetus. The life of a fully grown adult is not equal to that of a zygote. Before we even bring choice into it, that’s simply the case.

As heartbreaking as that can seem in situations where a pregnancy is not viable, or comes with a hefty price. This statement excludes cases of late-term “abortions” due to fatal fetal abnormalities, as we all know that late-term “abortions” are simply not done for the craic (in any country) and any further explanation on that would frankly be stupid and I hope unnecessary. When a matured, wanted foetus is dying in its mother’s womb, it’s horrendous for the parents. It’s not something to be mocked, or mislabeled. And it certainly isn’t something Irish parents should have to deal with, alone, in a different country. A financial burden on top of saying goodbye to their child in peace.

Shit happens

Luckily I finished my treatments without any accidents. But shit does happen. It happens to Irish women each and every day. So I have to put myself in their shoes. What would I have done? Could I have been able to access medical support after coming home from England? Would I financially be able to even afford a termination? Is it possible that I would I be held by the state if I informed my doctors of my wishes? Would I even feel comfortable telling loved ones? Looking at such a broad issue, simply in my own terms, my own real experiences, just  does not cut it. And it shouldn’t cut it for anyone.

To truly look at this Eighth amendment and the restrictions it poses on Irish women rationally, we must not only look at it from how our own lives have gone to date. We must ask ourselves, “what if…?”. This is only one, small scenario that I can place myself in, even though it did not happen to me. Even though (under normal circumstances) I really don’t think I would ever choose an abortion in my life time. There are so many scenarios; so many stories that are not our own.

Abortion isn’t always an easy option but many have no regrets and know it’s the right choice for them; for all sorts of reasons that are none of our business. Many also have no choice.

No one can 100%, truly say “I will never terminate a pregnancy”, even when it seems completely unthinkable in our current lives shit happens.

[bctt tweet=”Criminalising abortion doesn’t stop abortion. The Eighth Amendment bans SAFE abortion.” username=”@thezebramom”]

How the Eighth Amendment could affect Laura with Psoriasis:

I have psoriasis. I’ve had it since I was nine, I’m 30 now. It had peaks and troughs but since being an adult it has more or less stayed the same. It’s not just flaky skin that’s itchy. It’s unsightly red blotches all over. The Psoriasis is on my face, breasts and bottom. No where is safe.

It has affected my self-esteem greatly and at times my physical health when it cracks and bleeds. When I was 15 it was so bad on my arms that I couldn’t raise them further than my chest and my mother had to dress me. That was pretty humiliating.

I’ve been called several names because of it ‘scabby’ being the most popular and nothing makes me retreat to being a child who wants their mother, than an adult who stares.
I’ve had several treatments and have tried many diets and none have worked for an extended period of time. The most relief I had with these treatments was three months.

Hope for relief

So, this year I was informed I was a suitable candidate for a series of injections. These are relatively new. The injections work by changing how your immune system produces skin cells. Psoriasis is an overproduction of skin cells.

One of the main side effects is that my immune system will be lower than the average person. I will be more likely to get a cold/flu and it viruses and illnesses will be harder to shift.

The biggest warning I got was not to get pregnant. I probably wouldn’t carry full term and if I did, we both would have lasting damage. I’m a married woman and perform my ‘wifely duties’ as a certain religious organisation calls it. We use two types of protection but nothing is 100% safe.

This is why the Eighth Amendment needs to be repealed. If I were to get pregnant it could be very detrimental to my health and the foetus. I also know, from having relatives with these conditions, that I couldn’t care for a special needs baby, while ill myself. It would be a likely scenario if I were to have a baby.

Potential pregnancy

My injections are life long, so I can’t get pregnant at all. My health is more important than a foetus. I have a husband and family and friends.

If I were to get pregnant, I would be devastated, particularly as I use two methods of contraception. I would have to arrange an abortion and that would be very upsetting. [pullquote]Nobody likes having to get an abortion but I firmly believe my health and well-being are more important.[/pullquote]

I also suffer with my mental health and to be honest, I’d be afraid that pregnancy would make it worse, due to the impact it would have on my life. My physical and mental health would be put on a back burner if I were to get pregnant under the Eighth Amendment.

I know I would be pressured to put the foetus’ health and needs before my own, even before it’s born. Sometimes I struggle to care for myself, never mind a helpless baby.

People have asked me if I can come off my medication to have children. The truth is, I don’t want to. It may be selfish but I want a quality of life for myself and not having children is a side effect of that. I did initially grieve before starting treatment but now I am fine with that decision. A door has closed but a new one has opened and so far, I haven’t looked back.

[bctt tweet=”No woman has an abortion for fun. —Elizabeth Joan Smith” username=”@thezebramom”]

How the Eighth Amendment could affect me:

During my last pregnancy, I was in a wheelchair from the first trimester until my daughter was three-month old. Having EDS, there are some risks involved in pregnancy. You are at risk of pre term labour, miscarriage and of hemorrhaging, to name but a few issues. I lost my son’s twin at about seven weeks into my first pregnancy.

Almost immediately into my second pregnancy my pelvis became an issue. Symphysis Pubis Dysfunction (SPD) is a pretty common condition during pregnancy; but not early on in pregnancy. Most women complain of the pain in their groin, back, legs and hips in their last trimester and usually manage with crutches.

The foetus growing inside me was just two inches when my body turned against me. The pain was unreal. I have put up with dislocated joints-even popping them back in myself but this was something else. I could not physically walk without crying. Some days I did try not to use it in order to stay mobile and avoid muscle wastage but even then I had to use special crutches. For days after I attempted walking I would be stuck in bed screaming in pain. Before pregnancy, I was on opiates and they barely took the edge of my chronic pain.

My waters broke weeks before I was due to give birth. I went into the maternity hospital and told them I felt a pop and a trickle. So they examined me and came to the conclusion that my waters hadn’t broken. I went for an appointment in the high risk clinic a couple of weeks later and mentioned baby had been a bit quiet. So they scanned me and lo and behold, half of my waters were gone. So I was induced that night.

Traumatic birth

I was put on IV antibiotics to prevent infection. We were both pretty lucky we hadn’t picked up an infection with my waters leaking.

Several hours later I gave birth but then I started to feel very unwell. I was vomiting and passing out. I was having a massive bleed and the midwives were calling for blood. Luckily, they stopped the bleeding on time and I lost half my blood volume. It took a year and high doses of iron for me to feel “normal” again. The whole experience traumatised me.

Three months and a lot of hard work and I got myself out of the wheelchair for the most part. I still have to use it if I am out of the house for an extended period of time. My pelvis is almost always dislocated and affects my back and legs as well.

Pregnancy could leave me permanently immobile

Progesterone plays a massive role with my condition as it causes my joints to become even more lax. If I were to get pregnant again, it is very, very likely that I will not be so lucky (not so much luck as I put in a tonne of work) to get out of the wheelchair. I have been warned not to get pregnant again. The contraception I am on at the moment but it will have to come out as it is affecting my health. I can not have any “unnecessary” surgery like a tube ligation or hysterectomy. A C Section can not be performed without it being an emergency because I am susceptible to infection, stitches don’t hold well and I would suffer with chronic regional pain on top of the wide-spread chronic pain I suffer with now.

I have two children. I have a husband who is my carer. He does almost all the cooking and the cleaning while looking after our two children and a budding business. There are days where he must help me get out of the shower and even dress me.

If I were to have another baby, I would never have a “good day”. I would be in even more pain than I am in now. An American doctor who used to be an Oncologist has stated that EDS would be one of the top three most painful conditions to live with.

Abortion would be the best decision for our family

[pullquote]I can not put myself in more pain. It is not possible to put my family through more than what they already experience. I have to be a mother to the children I have now[/pullquote]. Ehlers Danlos Syndrome is an inherited condition. My children have a 50/50 chance of having this condition. Both our son and daughter have EDS. Our two-year old daughter is more affected than my son-suffering three dislocations already. I can’t subject another child to this life of pain. I will not. Accidents happen and if I were to get pregnant accidentally, I would have to have an abortion no ifs or buts.

Travelling for any amount of time leaves me bed/couch bound for days. Stress causes my symptoms to flare. If I should need to have an abortion, I should be able to go to my local hospital, have the procedure and go home that night to my own bed, to be surrounded by my family. I should be able to be open about what had just happened and not hide it in shame. I would be making the right decision for my family. The family that is living and breathing.

Up until pretty recently, I was anti choice. It was when I had to travel to the UK for treatment not available in Ireland that my mind was truly changed. I empathised with all the Irish women who had to travel. I cried at the thought of these women being alone because their partners couldn’t get the day off work or because they were raped and didn’t want to tell anyone.

The Eighth Amendment needs to go.

I’m fighting for repeal of the Eighth Amendment not just for me, but for my daughter. EDS gets worse when a girl hits puberty and most of the time, during pregnancy. If she’s already this affected now, it does not bear thinking of how the condition will manifest later on in life. She needs to have bodily autonomy. This condition takes away so many freedoms over our bodies, we do not need anything else taken away from us.

I have started a Facebook page, Disabled People for Choice in Ireland to show the world that despite what the anti-choice might think, there are those with disabilities who believe in choice, no matter the situation.

[bctt tweet=”You cannot have maternal health without reproductive health. And reproductive health includes contraception and family planning and access to legal, safe abortion. —Hillary Clinton” username=”@thezebramom”]

Some facts from the Abortion Rights Campaign in Ireland:

  1. The Eighth Amendment equates the life of a woman to that of an embryo.
  2. The vast majority of women who want and need abortions are unable to access them in Ireland under interpretations of this law.
  3. Women have already died in Ireland having been denied life-saving abortion procedures.
  4. At least 150,000 women have travelled to other countries to procure abortions since 1980.
  5. Thousands of women are unable to travel for abortion services due to family, legal status, financial situation, or health.
  6. People who procure abortion within the country risk a 14 year jail term. Doctors can be jailed too.
  7. The majority of people in Ireland support much wider access to abortion than is permitted under the 8th Amendment.
  8. The life and health of a pregnant woman has a much greater value than our constitution places on it.

Thank You to Laura and Catherine for sharing their stories with me.

If you would like to tell your story, email hello@thezebramom.com

 

Awareness, Breastfeeding, children, chronic illness, chronic pain, disabiliy, Ehlers Danlos Syndrome, family, health, parenting, Rare Diseases, relationships, spoonies

The fault in our genes and the guilt that goes with it

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When you’re child is seriously hurt you can feel so helpless. You might feel guilty for not having a sharp eye on your little one when they injure themselves. If you have a faulty genes and a genetic condition that you’ve passed on to your child, there’s an added guilt.

Last Saturday two year old Ollie Pops N’ Clicks was playing happily with her Dad. We had a lovely day up till then, hubby and I were celebrating our five-year wedding anniversary. My Dad cooked us a beautiful lamb dinner and after we retired into the sitting room in front of the stove. Despite having a pain flare, I was content. That is until Ollie started screaming.

She was pulling on her Daddy’s clothes and then all of a sudden her arm was hurting. Nobody could touch it and if we tried to move it she cried. Hubby knew immediately that we were faced with something that happened in 2015. Ollie was just seven months old then. Her elbow was dislocated. She was behaving the same way she did that cold night in November of 2015.

Ollie 7 months
Ollie the morning after she dislocated her elbow the first time

So, we had to leave Bendy Boy with his Granddad for the night as we sped up to the Accident and Emergency Department (A&E) of the University Hospital. She fell asleep before we even made it out of town. I thought maybe she was OK now but when I touched her arm she woke up screaming.

What is a 45-minute journey felt like hours. We arrived into A&E and we were surprised to see how quiet it was for a Saturday evening. Then again, it was still pretty early. The drunks and those involved in fights wouldn’t be in for another few hours yet.

At the hospital

After we checked in, we sat in the waiting area. Looking around I saw a teenager with their arms in a sling, an old man with bandages around his head and another man with a black eye. I was worried that this scene would upset my already frightened two year old. You could tell exactly what was wrong with these people. All you could see when you looked at Ollie was a little girl with a sourpuss face protecting her little arm.

Just like before, the Triage nurse saw us fairly quickly, when we explained what we think had happened and that I have Ehlers Danlos Syndrome. This is a result of my faulty collagen genes. We were taken into the ward.

The last time Ollie was seen in A&E at just seven months old, she had to have an X-Ray. It was torture for us both. I had to move her tiny little arm around in different positions. She cried, I cried. This time however, there was no need to X-Ray because of her history.

When I told the on call doctor that I had EDS, he asked could he have a look at my hands. He bent my fingers back and pulled on my skin. He nodded and turned to little Ollie who was finishing off her second ever dose of painkillers. In two years she’s never been ill enough to need any type of medication. The only time she’s had Calpol is the first time she dislocated her elbow.

Like a punch to the stomach

me and kids
You do what you can to protect them

Anyway, he attempted to take Ollie’s hand but she was petrified. He did eventually manage to get it and within seconds. He confirmed it was dislocated and he said it’s pretty safe to say that my beautiful daughter has EDS. She has inherited my faulty genes. It was like a punch to the stomach.

We knew this since pregnancy but every time I hear a doctor say it again, the guilt gets to me. Ollie is not officially diagnosed with EDS. We hope to rectify that soon just in case social services do get involved during a future trip to A&E.

Like nothing ever happened

Within forty minutes of arriving at A&E we were out the door. Ollie was back to her old self again and I’m pretty sure she was on a sugar buzz after that medicine. She kept talking about how the doctor fixed her and that she was all better now. We arrived home and the three of us sat on the couch to unwind after a stressful couple of hours.

Ollie climbed on me and fed until she was ready for sleep. She then sat up and threw herself on to the couch. I watched her sleep for awhile. She looked so peaceful and you’d have never had known she was in agony just an hour before. We carried her into her new room and didn’t see her till morning. It really is amazing how resilient kids are and that does make it a lot easier to live with a condition like EDS.

Ollie after hospital
Like nothing happened

I know I cannot control my genetics and that I shouldn’t blame myself for Bendy Boy’s diagnosis and Ollie’s inevitable diagnosis. But, I can’t help it; this illness comes from me. If Ollie is dislocating this early on in life it doesn’t bare thinking what will happen, as she gets older.

What does the future hold?

When she starts playschool, when she’s old enough to play outside with friends, when she climbs a tree for the first time. Then there’s puberty. The majority of girls with EDS experience an increase in symptoms when they reach puberty. This is because the hormone, progesterone wreaks havoc on our bodies. Progesterone makes us lax. It’s why girls and women suffer more during their periods and in pregnancy.

How many more times is she going to be in hospital with an injury? Is she ever going to work or have a normal life? These questions whiz around my head. I try to say to myself what I would say to anybody in this situation; cross that bridge when you come to it.

Overcoming the guilt of faulty genes

But, I will eventually overcome this guilt. How? Because I know I am the best person to get my children through what they will face later down the line. I know what they need, who they need to see and where I can take them to make all this happen. The fight for access for appropriate medical care of which there is none in this country will be my biggest challenge. I will take them to the doctor or hospital as many times as they need and I will do it with empathy.

They will be believed when they tell me they are in pain, because I know what it’s like not to be believed. Not being believed by my parents, by friends and by doctors affected me greatly and I still carry that pain around with me. That pain can be just as great as the physical pain my genes have caused me. An old friend once said that she would rather face a pack of rabid Rottweiler than a parent who wants to protect and fight for their children. If you mess with my kids and their health, I’ll go through you for a shortcut.

Be your child’s champion

The Fault in our genes

Having EDS myself makes me the best advocate for my children. Any patient with a rare disease becomes his or her own expert. I will now be the expert for my children too. From how their genes work to the treatment they need, I will be their champion.

It is a great comfort knowing that they will always have each other to lean on for support. Even when I am not there anymore to fight for them, they can fight together.

So, for anyone out there who is feeling guilty for passing on their crappy genes, know this; it is not your fault. I know more than anybody that it’s hard not to. Take a leaf out of my book; take that guilt and turn it into something positive. Raise awareness of the condition, fight for proper treatment, do everything in your power to make your child’s experience with their condition better than what you experienced.

Until next time,

Z.M

x

 

 

Awareness, chronic illness, chronic pain, disabiliy, Ehlers Danlos Syndrome, family, health

The Eighth Amendment: How it Affects Pregnant People with Chronic Illnesses. Part I

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*The Eighth Amendment affects people who have the ability to become pregnant In Ireland.

The Eighth Amendment states that the foetus has the same rights as the person who is pregnant. Ireland and Malta are the last two European countries where abortion hasn’t been made legal. The Eighth Amendment was added to the Irish Constitution in 1983. It means that abortion services are unavailable in Ireland. Even in the case of fatal foetal abnormalities or when a woman becomes pregnant as a result of rape. Approximately 12 Irish people per day are forced to travel to the UK to have an abortion.

It’s more than just abortion

But the Eighth Amendment also affects pregnant people who choose to stay pregnant. The big issue I personally have with the way the Eighth Amendment is being portrayed in the media and by the “pro life” side. It is that it’s made out to be solely about abortion. The Eighth Amendment is so much more than the issue of abortion. This week, as the first part of this series, we will look at the issue of consent during pregnancy and birth.

According to the Health Service Executive’s (HSE) National Consent Policy

[pullquote]

“because of the Constitutional provisions on the right to life of the unborn [Article 40.3.3] there is significant legal uncertainty regarding a pregnant woman’s right to [consent]”.

 

[/pullquote]

This section of the HSE’s policy allows the HSE to apply for injunctions from the High Court. These injunctions compel pregnant women to receive treatment when they have not consented. Sometimes, what the HSE are seeking injunctions for is not seen as best practice by international standards.

In Ireland pregnant people are frequently induced early without any medical reason. They are cut without consent, medicated without consent and not properly informed of the procedures forced upon them. This issue of consent was highlighted in the 2014 Association of Improvement in Maternity Services (AIMS) Ireland survey of 2,836 women, where less than half of all respondents said they were given the opportunity to refuse consent to tests, procedures and treatments. Less.Than.Half.

Strike 4 Repeal protest Credit Siobhan Venables

 My own story:

Looking back at my first birth, I was affected by the Eighth Amendment. Induction was to be scheduled just nine days after my “due date”. It was my wish to go the full fourteen days but my consultant said that was not hospital policy. I was afraid to argue because I had seen stories of women brought to the high court and even threatened with social services because they went against hospital policy.  Frustratingly, the midwife who began my induction said by the way I was looking, I would have given birth on my own a couple of days later.

My second birth was quite similar. I wanted so badly to have a home birth but just seeing I had a pre existing condition made me an unsuitable candidate. The midwives knew I wanted to do this so badly. They hadn’t even heard of Ehlers Danlos Syndrome so why was it a straight up no without a consultation with the head of the Home Birth department? Now, having a hospital birth was the best option in the end but I was not given a choice from the get go.

No informed consent, no wishes respected

I specifically told the hospital I did not want an epidural. I was not to be offered an epidural. If I wanted, I would ask for it. Did that happen? Of course not.

[pullquote]The midwives wore me down, they kept insisting and being in pain and exhausted, I gave in. I had no choice in either of my labours. I was not informed that induction would be far more painful than a natural labour or that it would be far more lengthy.[/pullquote]

There was no indication that I would be going through my first birth alone because of the Swine Flu epidemic. I was given my orders and at 22, I just went along with it. I was not one to kick up a fuss (that’s changed now). After all, doctor knew best. Or so I thought.

 Long-term effects

For the following six months after my first birth, I had nightmares every night about being induced and being alone for the majority of my labour. My husband was only there for the very last bit of my labour and for the birth. He was with me for the entirety of my second, which made the experience far more positive.

I was told by a midwife recently that if I had been in the UK, that even with my EDS, my choices would have been respected after I had been informed about any risks.

I spoke with other Irish people with chronic illness/disability about how the Eighth Amendment has affected them. This blog has been a long time in the making because I wanted to do justice to their very important stories. Stories that show the Eighth Amendment needs to be repealed.

*Names have been changed to protect the identity of people affected by the Eighth Amendment:

Two women with signs protesting against the eighth amendment
Strike 4 Repeal protest
Credit Siobhan Venables

The Eighth Amendment affected Jennifer with Ehlers Danlos Syndrome:

Initially I hadn’t wanted to give birth in a hospital. My ideal birth was a water birth in the comfort of my own home. I wanted to share a bed with my partner the night our child was born. I hated the idea of him being sent home on his own after helping me through everything.

Unfortunately, I was told what I wanted wasn’t possible. I was told my BMI was two points higher than they would like. Although I never had any complications associated with high BMI that was that. The water birth was not going to happen in the hospital. The head midwife told us the HSE had padlocked an entire wing with brand new birth pools and my obstetrician admitted it was partly because disinfecting the birth pools had been deemed too expensive. I settled on an active birth, low lighting where possible, two birth partners (which I fought for), quiet voices and positive language. There was to be as little intervention as possible.

Jennifer’s Birth Story

At 41 weeks I was brought in for an induction, we had started sweeps a couple of weeks before, but I had excess amniotic fluid so our baby was essentially bobbing and couldn’t engage for long enough to get labour going by himself.

It was a Thursday I was brought in, I was given the max dose of hormone gel on my cervix between then and Saturday. I had contractions and ironically was allowed to go and have a normal bath in my early stages of labour.

The birth I didn’t want

On Saturday I was told my waters needed to be broken. My mother and partner were there with me. I was brought into a procedure room; the ones that don’t have a full bed but instead something closer to a lounge chair. The air con was on and loud enough that we had to raise our voices to be heard. I was told it couldn’t be switched off. When they broke my waters there was meconium in them. The midwives were starting to panic. We were given an hour to get my labour moving or I would be put on a drip.

I asked if I could send one of my birth partners to get my birthing ball from the car and was told they would give me one instead. So I went to the bathroom that was through the maternity triage ward. When the birthing ball finally arrived it was too short for me and under inflated. It far from ideal as I had a badly misaligned pelvis that went untreated throughout my pregnancy and never fully healed.

I was put on continual monitoring, I tried to ask if there was another way as this would prevent me from moving much and I was told we would see. This was about 1pm and it didn’t come off the monitors until after I gave birth at 5 am.

Emotional and physical scarring

It took 5 people to get an IV line into me. Two midwives and two doctors attempted and failed. Eventually an anaesthetist was successful. All of them tried multiple places. They had no issue finding veins but my skin was too stretchy and tough for them to get the plastic part of the line under my skin. Three years later I still have multiple scars from their attempts.

We were left with a midwife to get my labour going once all of that was done.  She was very matter of fact with me and somewhat lacking in bedside manner. She left the room for something and I cried.

I already knew even my most basic wishes weren’t going to be taken into consideration. It was rapidly turning into the labour I was hoping to avoid.

[pullquote]

It was rapidly turning into the labour I was hoping to avoid.

[/pullquote]

My tolerance for pain is high. I’ve walked around on a subluxated hip and fractured tailbone for three weeks without pain medication. I cope quietly until I can’t.  Because of that, my drip was turned up the max amount at every interval. The midwife who relieved the previous one was amazed I was already in the highest dose when she came in. I ended up having one breath between contractions. I was no longer coping well and kept saying I wanted to go home. They checked my dilation, 3cm. I knew I wouldn’t have the energy to get to 10 at this rate. Determined not to have a C-section, I gave in and asked for an epidural.

Before the epidural was administered and we were waiting for the anaesthetist I asked to go to the bathroom. I was told I wasn’t allowed because of the monitors and she would give me a catheter instead. It felt very unnecessary and it hurt.

Hurt, starved and threatened

I was cathetered three more times. The last two I wasn’t even asked, I didn’t need to go, she had to press hard on my stomach and force urine out of me.

When I did get the epidural it only worked on one side of my body, it took 4 hours to rectify. Apparently because I’m a larger lady (I’m a size 18).

Breakfast was served at 7am. My waters were broken before lunch.  I was denied food for my whole labour in case they needed to do a C-section. I went about 23 hours without eating.

[pullquote]

C-section and episiotomy were threatened against Jennifer.

[/pullquote]

I didn’t end up needing either and I didn’t have any tears from giving birth. I did get two minor tears either side of my urethra, where my clitoral hood meets my inner labia.

Man holding sign protesting against the eighth amendment
Strike 4 Repeal Protest
Credit: Siobhan Venables
Medical trauma affected my sex life

I discovered about a year later I also had a tear under my clitoral hood where it connects to the clitoris.

[pullquote]The midwife who pushed either side of my vagina as my son was crowning caused this. It affected my ability to climax for about two years.[/pullquote]

These were caused by the midwife who pushed either side of my vagina as my son was crowning. It affected my ability to climax for about two years.

“I did not give consent”

I had wanted to do delayed cord clamping but due to the meconium that wasn’t an option and I’m ok with that. It was my wish to let my placenta to come away naturally. Once my son was delivered they took him to the other side of the room to clear his lungs and check him over. Meanwhile I was given an injection to hurry up my placenta without my permission, which caused a massive bleed, they thought I was haemorrhaging initially. I understand this may have been necessary but there was no discussion, explanation or warning about the injection. I did not give consent.

Thankfully I have a happy healthy child and physically I have more or less recovered. Emotionally and mentally less so. I will not be giving birth in a hospital again unless I have complications during my pregnancy or labour that put my future children or me at risk.

How The Eighth Amendment affected Sarah with Crohn’s Disease:

I have Crohn’s disease, and I had a very rocky end to my pregnancy.

In the third trimester I developed pneumonia, and began having a massive flare. I was given great treatment in the maternity ward and went home.

At home I was spending days on the couch or running to the toilet. I had little energy and each trip to the doctor I was told that once baby arrived they would see what they could do. The main thing was plenty of rest and not losing weight, which I did a good job of- I was huge!

My previous baby was quite small, 5lb 10. I’m pretty petite myself, so I really wasn’t worried when they said this baby was small. I went for weekly scans, and every week baby was there moving away happily growing quite slowly but no signs of anything amiss.

She had an almighty strong kick so I felt pretty confident. I know these things aren’t perfect but one day the consultant called me in. She started tossing around terms like “hospital won’t accept liability” [pullquote]’hospital won’t accept liability’ [/pullquote] and when I asked if there was something wrong, she said she couldn’t guarantee this until baby was here.

Unnecessary induction

Something about the way she spoke made me feel like there was something wrong. Apart from my own illness, my vitals, baby’s heartbeats, scans and everything had been going well. I asked her when did she want to do the induction (I didn’t think I had a choice or was giving consent by the way, this sounded like a life or death matter) she said tomorrow.

Without much warning she told me to lie in the bed and said she was going to do a sweep. I was 36 weeks. The sweep was agony in my already inflamed pelvic area.

Sarah’s Birth Story

The next morning I was hooked up to the drip and ready to go. All was going well for the first while, I had strong contractions but I was up and moving about. After a while nothing still, so they turned up the drip and I had even more intense contractions.

Then my Crohn’s kicked in and I had a lot of tummy trouble, and a massive onset of fatigue. I’ll spare the details but I’m usually one to laugh about this and make toilet humour. Not this time. I began to have spasms, which I get when things are bad.

“Don’t be a Martyr”

That was making me push, except now was no time to push. The nurse decided that to spare my body, because in her words ‘baby doesn’t want to come out’ they would turn the drip up again to full.

After this I was told not to be a martyr and have an epidural. Admittedly I cried because none of this my choice.

[pullquote]Admittedly I cried because none of this my choice.[/pullquote]

I had a natural birth in the past and knew what my body was capable of. This however was my biggest nightmare to be so ill and scared and having things forced upon me.

I very narrowly escaped a forceps delivery by sheer will. The epidural helped some in the end and all the pushing was stage was over and I held my beautiful girl. She was perfect, as I knew she would be. She was content and happy and safe in there, and could have stayed a few weeks longer.

Postnatal trauma

That’s not where it ended for me though, some time after I suffered faecal incontinence.  It’s been an ongoing issue since. My specialist reckons I should not have had the procedure. [pullquote]A slow birth wouldn’t have put that strain on me, or a Caesarean if they genuinely felt there was a risk.[/pullquote]

My opinion was I could have been monitored in hospital and given fluids, medicines. I think they knew there was no risk. They were just too cautious- to the point I wasn’t allowed to make informed decisions. It was all decided for me, it wasn’t my body and when it was handed back they had damaged it with unnecessary medical interventions.

Woman holding sign at protest against the Eighth Amendment
Strike 4 Repeal protest Credit Siobhan Venables
No bodily autonomy

Sadly, the stories featured today are not uncommon in Ireland. I have rarely come across a birth story where a mother’s wishes were completely respected. Never has a birth experience 100 per cent positive. In 2017, pregnant people do not have bodily autonomy. People with chronic illnesses and disabilities know exactly what their body is capable of. We are stronger than most people in a number of ways. People with long-term health issues face so many obstacles on a day-to-day basis. We already have so much taken away from us because of our disabilities. When it comes to birth and labour, we feel even more helpless. The control over our own bodies is taken away. The Eighth Amendment is directly responsible. Ireland’s Eighth Amendment will continue to take away our rights until it is repealed.

Change needs to happen now

[pullquote]C-Section birth rates in Ireland are three times the recommended figure[/pullquote]. Rates of episiotomy and induction are also alarmingly high in Ireland. These facts are old news, sure, but it just goes to show how controlling the maternity system is over pregnant and birthing people’s bodies.  We have a dictatorship of a Health Service and something needs to change. There needs to be a massive overhaul of our maternity system and that starts with repealing the Eighth Amendment.

Some might say I am being dramatic here but Ireland in 2017 is like living in The Handmaid’s Tale.

Pregnant people are just vessels that need to be controlled and threatened when they disobey.[pullquote] In any other area of medicine, a patient’s consent must be sought. The hospital in question would have a lawsuit on their hands if they didn’t.[/pullquote] But then again, we know Gender Bias in medicine is a very real thing.

*It’s not just women who can find themselves pregnant. Nine-year-old girls can get pregnant. Transgender men can get pregnant. This is a human rights issue and not just a “women’s issue”.

Thank You to Jennifer and Sarah for sharing their stories with me. I know it can’t have been easy to write it all out and living through the memories again. You ladies are rock stars.

If you would like to tell your story, email hello@thezebramom.com

 

children, chronic illness, chronic pain, disabiliy, dysautonomia, Ehlers Danlos Syndrome, family, health, parenting, spoonies, tips

Back to school guide for parents with chronic illness

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Hey there, hi there, ho there!

It’s that time of year again, folks! Yep, the summer is well and truly over. We did it! We made it through but now, a new challenge begins.

While getting the kids back to school means our routines will settle again, it also means early mornings, arguments, searching for school books, shoes, lunch boxes, pencils etc etc. Mornings in our house are well, stressful. A symphony consisting of whining, shouting, shrieking and wailing.

In addition to the energy we spend getting ready for the school run each morning, stress can also really take it out of us and even cause our spoons to dwindle before the day has even begun.

This year I am determined in making a change, not just for me and my illness but for the entire family’s mental health. Stress first thing in the morning puts everyone in a fowl mood for the day. I am trying my very best not to sweat the small things in an effort to chill out and ease stress related symptoms.

I know I am not alone when it comes to the stress of the morning rush. Millions of families across the world go through the same thing. We all wish for the same routine, to wake up refreshed, have our breakfast and coffee as a family, to all get ready individually and walk out the door on time and kiss each other goodbye as we all go our separate ways. It may seem like a scene from The Brady Brunch or The Waltons but there are some small tricks I’ve learned over the past few weeks in preparation for the coming school year.

If my chaotic morning routine sings to you, why not join me in my attempt to be more of a Zen like zebra on a Monday morning.

Sunday night, everybody dreads it. You feel you’re wasting a perfectly good day off doing laundry, sorting homework, lunches and looking for books and hearing excuses like “I didn’t have time to do x y and z”.

Below was the trigger for my Sunday night dread. The moment that theme song came on, it was time for bed and began my anxiety, fearing Monday morning.

Not exactly an ominous tune is it? To me it might as well have been the Imperial March or ‘Jaws’ music.

Uniforms

This year, I am going to encourage my 8 year old to help me with the laundry on Friday afternoon. As soon as he comes straight home from school, he is to get changed. This is when his uniforms will be washed. He is well able to use the coffee machine for when Daddy needs his morning pick me up so he is well able to turn on the washing machine.

I know this will serve him well when he is older. I have met so many men (and women for that matter) over the years that didn’t have a clue how to use a washing machine once they cut the apron strings and flew the nest from their mammy.

During the week, my son will get changed straight away and put his uniform away while I prepare a snack for him. If the uniform gets dirty during the week, I usually just do a spot clean. If it gets particularly dirty, a quick wash will usually do the trick.

Homework

For now, my son does not get homework for the weekend. But during the week he can spend quite awhile doing homework due to his sensory issues and poor writing skills. Luckily his Occupational Therapist is going to recommend a laptop this year so hopefully that’ll speed things up. Bendy Boy usually does his homework in the kitchen. He is so easily distracted so we will set up a designated homework space for him this year. After he gets home from school, I usually let him have an hour of rest before we begin homework and physiotherapy. Then he must do his homework and physio if he wants to go out and play with his friends or watch some TV. This has worked for us for the most part in the past but when the days are sunny (almost a rarity in Ireland), I much prefer him to spend time outdoors in the fresh air and socialise with friends. Unfortunately we have had issues getting him to do his homework after play. “I’m too tired. I don’t want to etc etc”, there is nothing to look forward to now.

stressful homework

Lunches

It’s Sunday night. Sugar! No bread! No lunch meat! No fruit! This is also a regular occurrence and sometimes it even happens on Monday morning. Jesus, we really sound like the most unorganised family, don’t we?! If you have a chronic illness though, you’ll know exactly where I’m coming from. Brain fog…am I right? Anyway, this year all lunch box items will be organised on a Friday and rationed for the week.

Lunches can be so stressful, especially when you have a child that’s fussy or has sensory issues. One day they’ll eat sandwiches, the next day you’ll find them squished at the bottom of the bag (I was guilty of this). I am gagging at the very thought of bread in my teeth at the moment! We can’t all be like Martha Stewart or Bree Van de Camp and cook up uber healthy three course gourmet lunches (regardless of health, who has the time?!).

Give them what they like. It’s that simple. No use sending in kale and cucumber sandwiches if you’re just going to find them buried in the bottom of the school bag.

Bendy Boy gets hangry and I mean hangry. Don’t know what hangry is? Let me enlighten you. You know that feeling you get when every little thing bugs you? Someone’s breathing, chewing or you know…their very existence? Then you eat something and everything is alright again. That’s hangry. Think of the Snickers ad. Well, that’s Bendy Boy. When he’s hungry he’s in no fit state to be in school.

Obviously send in nutritious food but make sure it’s something they enjoy! Looking for some lunch box ideas? Check out this blog by awesome sister and nutritionist, Fiona.

As noted in Fiona’s blog, getting the kids involved with lunch packing the night before can take the stress out of what should be a pretty stress free job.

Like Fiona, for me, nothing could be touching and nothing could be soggy. Our poor, poor mother.

Make sure each day that you or your child empty the lunch box and clean it when they get home from school.

Monday-Friday

I refuse to have a screaming match every weekday this year. Nope. It’s not happening. If we sleep in, we sleep in, if we are late, we are late. It’s school. The world isn’t going to end. I am not going to give myself a migraine by stressing out. I’m not going to dislocate a hip running up the stairs like a crazy woman.

Between Friday and Saturday we are going to get everything ready so that we don’t suffer from Sunday night fear and we can enjoy the day relaxing or going on a family outing. So uniform will be ready on Friday and books will be sitting in his bag and by the door waiting.

On Sunday we will prep lunch and make sure coat, hat, scarf and shoes are waiting on the coat hook and shoe rail (right next to the front door).

One of the major causes of arguments in the morning with Bendy Boy is his distraction and forgetfulness. He goes and plays with toys instead of getting dressed and washed, he spends time singing instead of brushing his teeth (if he even remembers to do it). Half the time we have to remind him to do the next thing (now get your shoes on etc). So we have come up with a plan. He will have a chart in his room that will help him get ready on time in the morning. These are available all over the internet like this one . We are going to make one ourselves from card paper (spoon friendly activity) and write each task for the morning.

  1. Make bed
  2. Get dressed
  3. Eat breakfast
  4. Put dishes in dishwasher
  5. Brush teeth
  6. Wash face
  7. Brush hair
  8. Put on your shoes, coat and schoolbag.

Your job

Because kids have the attention spans of well, children. We can’t rely on them to be responsible for all school prep. So have your own chart on the fridge to check off over the weekend to make sure everything runs smoothly.

  1. Uniforms
  2. Lunches
  3. Check homework
  4. Check for notes in bag about school trips or events
  5. Make sure books and pencil case are in the bag
  6. Have your own clothes ready for the morning
  7. Keys ready by the front door
  8. Check forecast. If the weather is particularly cold make sure to get up earlier to defrost your windscreen and in case traffic or road conditions are difficult to get around.
  9. Set your alarm.
  10. If your kids are getting off school early set a reminder in your phone to pick up or organise someone to pick up in case you have an appointment or other engagement.

One final thing, make sure you try and get a decent night and wake up before the kids and take your meds so you’ll feel more equipped to deal with what lies ahead.

walking to school.jpeg

Do you have any tips or tricks to help save time in the morning? Let me know in the comments below!

As my Dad always taught me; fail to prepare and prepare to fail!

Until next time,

Z.M

x

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Awareness, chronic illness, chronic pain, dysautonomia, Ehlers Danlos Syndrome, family, Friday Feelings, Guest Posts, health, Rare Diseases, spoonies

Friday Feelings with Pain Pals Blog

2 Comments

Hey there, hi there, ho there!

As it is Ehlers Danlos Syndrome Awareness Month, during the course of May, we will be reading the diary entries of EDS sufferers. Each person experiences their illness differently and I think it will be interesting to see these differences throughout the month.

This week I spoke to Claire from Pain Pals Blog. The mum of two previously worked in health care but medically retired nine years ago. She now works in the education system and enjoys Spoonie friendly hobbies.

Claire was diagnosed with hypermobile EDS at 42. She also suffers from migraines; dysautonomia/POTS, chronic nerve pain, gut problems, Raynauds, neurogenic
bladder and reactive depression. You can find Claire on Twitter, Pinterest and Instagram. 
EDS - Claire pic 

“Hi, I’m Claire. I am a married mum of 2 boys aged 21 and 18, and a girl aged 14 living on borders of South London & Surrey, UK. My career was nursing and I trained and worked in various London hospitals, and then worked as a palliative care nurse in a local hospice – a fantastic, rewarding job that I loved. I was medically retired 9 years ago when my back gave up on me. Now I am kept busy with the family (more needy as young adults than they were as toddlers). 

I am a school governor at a local primary school, and I am about to become Chair of my old school’s friends’ committee. We keep old pupils in touch as well as arranging careers events for current pupils. I love meeting new people and interacting with the pupils at both schools. I love reading and belong to several book clubs, posting reviews on the blog, and when I can get there I love the cinema and streamed theatre live events.”

So now that we know a little about Claire, let’s have a read of her Friday Feelings entry.

giphy

“Dear Diary,

It’s Friday, many people will go out tonight for a few sociable drinks with their friends. On a typical Friday night I will usually be found curled up in my PJs! How much of the evening meal I help with really depends upon what sort of day I have had and how fatigued I am. These days my hubby, Duncan is based at home with me, and in theory the kids can take over the kitchen duties but, it is usually like Piccadilly Circus as they come and go, leaving us to keep pace with who is eating or not! Some weeks I will try to join in with Spoonie Speak – a chat set up on Twitter for those of us who can’t go out, but like a chat in our PJs. Like lots of spoonies Netflix, Amazon & TV play a big part in my life but, this week I am actually going out on Friday for the leaving dinner of the current Chair of the friends committee.

I really want to go but do get a bit anxious about making arrangements in case I have a bad day, can’t go and let others down. Not to mention missing out.

My physical health has really deteriorated recently and since having a spinal cord stimulator implanted for the chronic pain, my POTS symptoms have really gone mad. I feel frustrated, tired and worn down  by the constant pain, fainting, dislocations, drug side effects, losing my independence, the uncertainty of how I will be from hour to hour and struggling to make plans. Something I really struggle with is the fatigue and the subsequent guilt at needing to rest. On a beautiful day I can’t stand not being to jump up and just go for a walk in the park.

Some days I feel like I am constantly saying sorry for needing help to have a shower, for fainting, for being unable to cook, for being pushed in the wheelchair, even for not being able to lift the iron.

I try not to think too hard about the future for me – on bad days I can’t think about living with the pain, particularly the chronic back and leg pain, for another week let alone another 40 years! Sounds dramatic but that is how it feels. I also know that there is very little that can be done for the extreme joint pain – I have been told I need shoulder and hip replacements, but that it isn’t possible because of the dislocations and I’m still too young.

I don’t want to “give in” to the illness any more than I have to. Sometimes this is easier said than done – and at times the future feels uncertain.

But I do tend to do what I can when I can and probably don’t pace. I want to keep as active as I can for as long as I can, but the severity of POTS symptoms this last 6 months has left me feeling really low and really ill. Hopefully the different consultants can sort me enough to get me back on an even keel – but the lack of “shared” care is frustrating; repeating the same story over and over, no one knowing what other specialities are doing!

What does worry me for the future is the kids – the younger two anyway. The 18 year old has bad and frequent migraines, with neck pain, hand and arm pain. The youngest is now subluxating and dislocating, has daily pain in joints, can’t hold a pen in a normal grip, writes slowly and has pain. All 3 are dizzy on standing and lose vision – and all three are overly anxious. Two have had counselling, one self harms, one is on anti depressants, we are well acquainted with CAMHS!

I do accept that hardly anyone will have heard of EDS and have got used to suggestions of having collagen injections but what is tougher is the lack of understanding about what chronic illness means. No, I won’t get better. It is genetic so no there is no cure, not even for the kids! I feel that I have to justify myself for being tired, cancelling plans, etc. I hate having to ask for help and would love it if friends would just remember that I can no longer drive and offer a lift without me having to ask. Some people can’t understand why I use a wheelchair when I can stand and walk – pain is invisible, as are the implants in my back, and damage to my joints, but these are what making standing up and walking a near impossibility some days. I feel that other people’s lives are so busy and that I should be fitting in with them, after all I’m at home all day.

It is frustrating when I’m told how well I look and this happens when I’ve put on some lippie and blusher.

You don’t see me at my worst because I can’t actually get out of the house then! But I would probably rather people think I’m putting best foot forward and being positive – chronic illness doesn’t stop you wanting to look good, go out, have a laugh; even if you can’t always actually do this.”

 A big thank you to Claire for taking part in Friday Feelings and being so open with us. Can you relate to Claire? Do you feel guilty not being able to perform certain tasks? Let us know in the comments below!

 Want to write your own Friday Feeling entry?

Send

A high res photo

A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

It’s Friday, many people will go out tonight for a few sociable drinks with their friends. What do you do on a typical Friday night?
How are you feeling at this moment about your chronic illness?
How do you feel about the future in regards to your illness?
How do you feel about the way people view your illness?

and links to your blog and social media to evienevin87@yahoo.ie

Be sure to put “Friday Feelings” in the subject bar.

Until Sunday,

Z.M

x

 

Awareness, chronic illness, chronic pain, family, health, Rare Diseases, relationships, spoonies

Disability and Social Media

15 Comments

Hey there, hi there, ho there!

Sorry for the radio silence, I had been in London again for tests and treatments and then I had some pretty bad issues with my neck. After almost two weeks and muscle relaxers, it’s finally under control. Interestingly, the muscle relaxers seemed to help my general widespread pain. I do have chronic tendinitis pretty much all over my body so obviously muscle relaxers would be helpful. Unfortunately my GP won’t allow me to have them long term in case I start sublimating and dislocating more often. Anyway, I’ll update you with London in next week’s post but I really wanted to get something off my chest this week.

How many of you out there have had people accuse you of faking your illness based on things you post on social media? It really can be a lose/lose situation for those of us with disabilities. If you post yourself getting out and having fun, you’re not that sick and if you post yourself lying in bed in pain, you’re attention seeking. If you do both? You’re not being consistent and therefore lying about your illness. It seems people are under the impression to be truly disabled, you have to be miserable, housebound 24/7 and silent. Out of sight, out of mind.

Recently I had the displeasure of being accused of faking my illness by a family member. Why? Because the wide range of photos on Facebook show my life for what it is; inconsistent.  Some days I am in my wheelchair and some days I socialise with friends. Anybody with a chronic illness knows that you have your good days and your bad days. When you do have your good days, you take advantage of them. I was told by said family member to get off the internet and “go for a long walk.” I’m sure some of you reading this are scoffing at the very idea. I was pleasantly surprised to see how many of my non spoonie friends stood up for me especially when the conversation got nasty. Funny thing is this person hasn’t seen me in five years, so it’s not like they have seen me at home contorted in pain with heat packs attached to me and medicated up to my eyeballs.

Disability and Social Media

I’m sure a lot of us with invisible conditions face these judgements and questions pretty regularly. Unless you live the spoonie life, you don’t know what it is like to be ridiculed and made to feel insecure simply by sharing your life, the good, the bad and the ugly.

For most, social media is a way to pass the time. It’s entertainment. But for those of us who do not have the luxury of having a vibrant social life, Facebook, Twitter, Snapchat etc are what keeps us connected to the world on a personal level. Have you been told you’re “always on Facebook”? Well, I don’t know about anyone else but many of my fellow spoonie friends also use Facebook to connect with loved ones. I scroll through my feed to check in on them and to see how other loved ones are doing since I am not able to get out and visit people as much as I would like to. Of course I do enjoy the entertainment aspect of social media, I like the Buzzfeed quizzes and the odd meme too. I am vocal about all aspects of healthcare and politics too. I’m a pretty opinionated person, I don’t think that should be frowned upon though.

Social media is a fantastic way to raise awareness of the various conditions that fall off the radar. Thanks to selfie campaigns and social media challenges like the ice bucket challenge for ALS (or my beloved REDS4VEDS campaign) the general public know more about diseases that previous generations may not have ever heard of. Even simply sharing a meme or infographic about a condition can educate thousands or possibly millions of people worldwide.

me good day:bad day

Posting our feelings about our condition or how the health system/Government let us down may come across as moaning or self pitying but for the majority of us, we just want to be heard. It is so frustrating to live in a country where there is an incredible lack of care (both senses of the word) and to witness the poor quality of life those with chronic conditions have. Again, when you’re isolated from the outside world, you don’t get to vent to someone in person, like most people do. We can’t just get up and leave the house to visit a friend for a cup of tea and get things off our chest. Most people ignore these posts, and you know they will but, you also know that your fellow spoonie friends will respond and be empathetic. Sometimes just seeing a comment saying “I hope you feel a bit better tomorrow,” can brighten up your day.

Posting a wheelchair selfie or a “good day” selfie doesn’t have any motive, we post photos without thought, just like everyone else. People post photos of themselves in the gym, or their food. What’s so wrong with us posting photos showing the complexity and inconsistency of our lives? Again, it’s about awareness. I think so many people are under the impression to be truly disabled, you must be missing a limb or in a wheelchair full time. As I’ve said, we do have our good days, they are far and few between and so on those days, we take photos and post. To be honest, most of the time it’s just a way to keep all the photos in one place. I also love when Facebook sends me a memories notification. I often get to see photos of a day I’ve completely forgotten about or a post of how ill I have been. I look back and see I’ve survived so far, and that can sometimes boost my motivation to keep fighting for recovery.

The thing about social media is it has given people the confidence to be cruel and rarely have to deal with the repercussions of their words because they post in the comfort of their own home. In reality, the majority of keyboard warriors wouldn’t say these things to your face. Also, these people forget they have the free will to scroll on by or unfollow someone if they don’t want to see “depressing” posts (yes, my life was too depressing for this lovely family member). There’s a plethora of posts on social media that aren’t to everyone’s liking or taste and most of us choose to either ignore them because it’s not worth loosing a friend or a family member over.

Anyway, I just wanted to get this off my chest because it is something that has been bothering me for awhile.

Until next time,

Z.M

 

 

 

Awareness, chronic illness, chronic pain, disabiliy, dysautonomia, Ehlers Danlos Syndrome, family, health, Rare Diseases

The Zebra Mom in the News

4 Comments

Hey there, hi there, ho there!

So this week’s blog is coming a little early because we are flying off to London tomorrow. This week has been very tough on me because my legs have become so weak that I can not stand up without help. I am on day two of a migraine and nausea too. So driving 3 hours up to Dublin and flying to the UK is going to be very hard on me. This will my third trip in a year going over to London for treatment and testing.

This trip I am having autonomic testing and physiotherapy. The children are also going to see their physio on this trip.

The last couple of weeks have been mental though. We have been on three newspapers, another on the way and I have been on the radio too talking about the lack of care in Ireland for patients with EDS. I am also lobbying for medical cannabis to be granted for those with chronic pain. I found out just yesterday that one of the newspaper articles below was read out in the Dail (Irish Government building) during a presentation about medical cannabis. Apparently my story of just wanting to be better for my children moved a lot of people. Medical cannabis could make that a reality.

The Zebra Mom in the News

Article from The Southern Star by Kieran O’Mahony

‘I’m left helpless to ease their pain’ says Clon dad in bid to get UK treatment

Echo photo

A CLONAKILTY man who says it pains him to see his wife and two young children suffer from a cureless condition, has set up a funding page to help them access treatment abroad.

Martin Nevin set up a GoFundMe page for his wife Evie (30) and their two children Alexander (7) and Olivia (2) who suffer from Hypermobile Ehlers Danloe Syndrome (EDS) and Dysautonomia.

The chronic, multi-systemic conditions have left his wife and children susceptible to joint dislocations and chronic pain and fatigue, as well as many other issues which can severely affect their standard of living.

In a poignant post on the page, Martin outlined why he set it up.

‘It pains me to see these three fantastic people suffer, to watch a woman with so much talent restricted from sharing it with the world, to see a boy with the will to climb a mountain withdraw from fatigue and to see the sweetest and the happiest little girl ever cry with agony due to dislocated joints.’

‘I can do nothing but watch their symptoms flare up. I’m left helpless to ease them and that is why I’ve set this page up so my family can get the treatment they need,’ said Martin.

Although the condition is slowly being recognised here, there are no specialists or facilities in the country to help sufferers, leaving the Nevins with no choice but to seek treatment abroad.

‘The Ehlers Danlos Syndromes are a group of connective tissue disorders which cause the body to produce faulty collagen and collagen is the glue that holds our bodies together. We are also affected by Dysautonomia, which means out autonomic systems don’t work properly. While Alexander and Olivia are not very affected by this condition, it does affect me and it can cause me to faint by simply cooking dinner,’ Evie told The Southern Star.

Evie and Martin have been told by the HSE that there are no plans to help patients with EDS in Ireland, so they are looking to London for treatment. ‘It’s a little too late for me now, as my body was neglected for almost 30 years, but the children are lucky to have been diagnosed so early,’ explained Evie. ‘So with help in the UK, we hope that they won’t become as affected as me.’

Evie said she is almost house-bound seven days a week, and she has been unable to work for several years due to her condition.

‘We want to give our children the best possible chance at a normal life and it’s really only now that I am getting tests and treatments for myself.

‘While we look to getting treatment abroad, we’ve been told that the Treatment Abroad Scheme won’t cover the costs to the UK, because our doctors are private consultants and the Cross Border Directive won’t cover our tests because they need to also be available in Ireland, which they are not.’

Evie and Martin also received another big blow with the recent announcement that chronic pain won’t fall under the Medicinal Cannabis Bill.

‘Medicinal Cannabis is often recommended for EDS patients in the US because patients are often resistant to pain medications, particularly opiate-based pain killers,’ added Evie.

Evie herself has been working tirelessly to get this condition recognised in Ireland and has written extensively on this for many newspapers and journals, as well as spearheading a campaign for all EDS sufferers.

The family recently attended the Hospital of St John and St Elizabeth in London where they met with professors who specialise in EDS and Autonomic Dysfunctions.

‘We have had to break up the trips over to London which is more expensive, so every time we go back they add on other tests and consultancies, so we are going to be fundraising for the foreseeable future.’

The family have set up a Go Fund Me page to raise the vital funds to avail of the treatment in London and they and their friends have already been fundraising by holding events in Clonakilty.

See www.gofundme.com/2befu24c or see ‘The Nevin Family Treatment Fund’ on Facebook.

Interview on C103’s Today show

Play from 56:20 to hear my interview below

https://soundcloud.com/cork103/corktoday-4th-april-2017

 

Article on The Irish Examiner by Sarah Slater

Cork family pleads for help to battle rare illness

A young mother and her two children are battling an illness that is consuming all of their short lives.

Nevin Family

Evie Nevin, aged 30, her son Alexander, 7, and daughter Olivia, 2, have the rare and debilitating condition, hypermobile Ehlers-Danlos syndrome (EDS).

Although EDS is slowly becoming more widely known in Ireland, there are no specialists or facilities in the country to help people with this condition.

There is no cure for EDS, but with careful management and specialised physiotherapy the quality of living for someone with EDS can be improved.

Most Irish EDS sufferers are referred to Rodney Grahame, consultant rheumatologist at the Hospital of St John and St Elizabeth, London, who has said: “No other disease in the history of modern medicine has been neglected in such a way as EDS.”

Members of the EDS community have campaigned for specialist treatment here, to no avail. They recently learned that there are no plans by the Government or health services to implement any.

Evie, from Clonakilty, Co Cork, is prone to hip and wrist dislocations on almost a weekly basis. She is extremely effected by changes to pressure and can be left bed-ridden with pain from something as small as a rain shower.

I went from getting up at 6.30am and getting home at 9pm working as a journalist in 2012 to being someone just existing in 2013,” she explains.

“I remember being very self-conscious all the time because I rarely had the energy to get dressed and people only really saw me in my pyjamas. I got called lazy a lot. That hurt. I didn’t know what was wrong with me, but I knew it wasn’t laziness.

“When Alex was diagnosed my heart broke. I felt so guilty. My genes did this to him but, thankfully, I’ve moved past that now because what’s the point in feeling guilty? He’s lucky that he has been diagnosed so young and that he has an excellent school who support him by providing resource hours, an SNA and movement breaks.

“It was confirmed for me before Olivia was born. I felt her skin and saw the hint of blue in the whites of her eyes when she was born.

“My heart goes out to Martin. He didn’t ask for this at all. When we first met I was still relatively ‘normal’.”

Evie’s husband Martin, 29, has thrown himself into fundraising to get his family the specialist treatment they need, as well as being a videographer. He’s also determined to keep their spirits up.

“I feel like such a burden to him, but he never makes me feel like that,” says Evie. “Even on days when I’m in agony and not so pleasant in my manner, he doesn’t complain. He has never once made me feel bad for being sick or for the kids inheriting my genes. It’s all down to me and my issues.

“He took his ‘in sickness and in health’ vow very seriously! He’s a brilliant dad and husband and treats us when he can so we have things to look forward to. When you’re stuck at home six days out of the week, most weeks, looking at the same four walls, you need something to keep you looking forward.”

For now, the focus is on fundraising, but the Nevins are facing the fact that they may have to emigrate to properly deal with the condition. They have been told they cannot access either the Treatment Abroad Scheme (TAS) or the Cross-Border Directive (CBD).

“The TAS only covers treatments available on the NHS,” says Evie.

“The Hypermobility Unit in St John’s and St Elizabeth’s in London is a private hospital so our consultancies and treatments won’t be covered.

“The CBD will only cover medical issues that are also available here in Ireland and the tests and scans I must have in London are not available in Ireland.”

In a statement, the HSE said: “EDS is treated across Europe by multidisciplinary teams, often led by physiotherapists, with extreme cases being sent to orthopaedic for corrective surgery. EDS is readily treated in Ireland by physiotherapists. There is no specialist centre in Europe or the UK.”

Evie refutes this: “There is no treatment available here, no matter what they say. The people in charge will say rehab in Harold’s Cross is an option, but they are in no way experts and the reviews from my community haven’t filled me with any confidence that they could take care of me and my complex conditions.

“Right now, we are aiming to move abroad somewhere where there is better care and where the air pressures are more stable than Ireland. The kids are becoming affected by the pressure changes too. Both of them wake in pain when we have particularly nasty weather.

“Obviously I can’t blame the Government for the weather, but I do blame them for not setting up a clinic for people with connective tissue disorders.

“We need somewhere with a multi-disciplinary team like in London. We need consultants that communicate with each other. Things slip through the cracks because of the lack of communication and a holistic approach.”

One development that could make a huge difference to the family’s lives is medicinal cannabis. Those with EDS are often resistant to pain medications and they find it difficult to manage their pain. Medical cannabis is recommended for EDS patients in the US.

There is an increasing call by medical support organisations for greater access to medicinal cannabis for patients with debilitating conditions.

A Health Products Regulatory Authority report published last month advised that, if a policy decision is taken to permit cannabis under an access programme, it should be for the treatment of patients with three conditions — spasticity associated with multiple sclerosis; intractable nausea and vomiting associated with chemotherapy; and severe, treatment-resistant epilepsy that has failed to respond to standard anticonvulsant medications.

“When health minister Simon Harris announced that only three conditions would be approved, none of which are related to chronic pain, I was devastated,” says Evie. “I had been hopeful and excited at the idea of having some normality back in my life.

“Medical cannabis could be seriously life-changing for my family and me. In the US, EDS experts highly recommend cannabis as a form of pain relief as many patients are resistant to painkillers, specifically opiate-based pain medications.

“I have changed pain medications so many times because I’ve become resistant pretty quickly to them. This is now starting to happen with my current medication, Tramadol.

“I’d rather have medical cannabis over my Tramadol because taking 5,000 painkillers a year can have serious repercussions on my body. If I can access cannabis safely and with help from the HSE, I may not develop symptoms of long-term opiate use such as depression, hormonal dysfunction, and respiratory depression, to name just a few.

“I have used cannabis-based products to manage my symptoms. I use a MediPen, which has been helpful for my chronic fatigue, but not for my pain. I have smoked cannabis and I find that, on days when my Tramadol isn’t working, it’s the only thing that helps manage the pain.

“I also find it good for my appetite because I don’t eat a lot when I’m in a lot of pain. I’m so nauseas and I find Tramadol suppresses my appetite sometimes. There are days I’d be lucky to get 800 calories into me. I would like to be able to access cannabis legally so that I can function a bit better in my day-to-day life and be a better mother and wife to my family.”

For now, another round of tests and physiotherapy for Evie, Alexander, and Olivia at St John’s and St Elizabeth hospital in London, as well as flights, accommodation, and private medical consultations in Ireland, mean the young family need to raise in the region of €10,000 for the first trip.

Martin says: “It pains me to see my family suffer. I can do nothing but watch when their symptoms flare up. I’m left helpless.

“So I’m asking the public for their help, as a father and as a husband, to send my family to get the treatment they need. Anything you can spare, even a few euro, will make a massive difference.”

You can find out more on their GoFundMe page, or on Facebook.

The symptoms

Ehlers-Danlos syndrome is a genetic connective tissue disorder that affects the joints, skin, and blood vessel walls.

Sufferers usually have overly flexible joints and stretchy, fragile skin. This can become a problem if a wound requires stitches.

There are 13 types of The Ehlers Danlos Syndromes and symptoms vary.

Overly flexible joints can result in dislocations and early-onset arthritis. Fragile skin may develop prominent scarring. Those with the vascular disorder are at risk of often-fatal ruptures of major blood vessels. Some organs, such as the uterus and intestines, may also rupture. Pregnancy can increase these risks.

In other forms of the disorder, fainting and low blood pressure occurs because blood vessels stretch. Stomach wall lining is fragile and bowel ruptures can occur. Constipation and other motility (movement) disorders feature, as does gastroparesis (paralysis of stomach; inability to process food).

Excessively loose joints are the hallmark of hypermobility disorder as suffered by Evie, Alexander, and Olivia. Large joints and small joints are affected. Partial and total joint dislocations are common. Many experience chronic limb and joint pain.

ENDS

It has been a crazy couple of weeks and thanks to these journalists, we have reached our first goal of 10,000 Euro! When the Irish Examiner piece came out over 2,000 was raised in that day alone. I am truly blown away by stranger’s generosity and kindness.

Another good thing that came out of all of this is that I have had parents from all over the country ring me to ask for advice regarding their children. Sadly, and also not surprisingly, many families are given diagnosis but then offered no support or solutions. In Ireland we have to fight for every support we get. This is no country for disabled people. The entire health system is lacking in every sector.

Standing up and speaking out does work. You just got to keep chipping away at the block. I truly believe my story has made a difference in regards to awareness and lobbying for medicinal cannabis.

Next on our press list is an article with the Evening Echo. We hope that some more newspapers, radio stations and TV stations get in touch. Not so that we can fundraise, but to raise awareness and give chronic pain patients a voice.

Until next week,

Z.M

 

 

Awareness, Breastfeeding, children, chronic illness, chronic pain, dysautonomia, Ehlers Danlos Syndrome, family, health, parenting, Rare Diseases, relationships, spoonies, tips

How ‘attachment parenting’ helped me with my chronic illness

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Hey there, hi there, ho there!

Soon I’ll be back to London for my next round of tests and physiotherapy. The smallies will also be seeing their paediatric physio in the Hypermobility Unit in London. Going abroad with small children can be so stressful and takes up so many of your spoons. I remember with Alex, everywhere we went, even for a short trip to the city we had a truck load of things to bring with us. This time with Olivia it is so much easier because my parenting technique is so different.

Attachment Parenting&Chronic Illness

So what is “Attachment Parenting”?

Well, for me I just call it parenting, it’s the biological norm to raise a child so I hate putting a label on it.

According to parenting science.com:

“Attachment parenting” is an approach to child-rearing intended to forge strong, secure attachments between parents and children.”

Attachment Parenting is often referred to as AP.

But how does AP differ from any other type of parenting?

AP is associated with a number of practices, including:

Baby-carrying or “baby-wearing”
Breastfeeding on cue
Nurturing touch (including skin-to-skin “kangaroo care” for infants)
Being responsive to a baby’s cries
Being sensitive and responsive to a child’s emotions (e.g., by helping her cope with nighttime fears)
Co-sleeping

In addition, attachment parenting advocates often promote “positive parenting,” an approach to discipline that attempts to guide children by emotion coaching, reasoning, and constructive problem solving.

However, proponents of AP–like William and Martha Sears, who coined the term “attachment parenting”–note that there is no checklist of rules that parents must follow to qualify as “attachment parents” (Sears and Sears 2001).

Family circumstances may prevent parents from carrying out every AP practice. What’s really important, argues these authors, is sensitive, responsive parenting-— understanding and addressing your child’s needs in an affectionate way.

Similarly, the founders of Attachment Parenting International argue that that attachment parenting is really about adapting a few general principles–like providing kids with a consistent, loving, primary caregiver–to the particular needs of your family.

This is not the same as being overly-protective. By definition, securely-attached kids are not overly clingy or helpless. They are the kids who feel confident to explore the world on their own. They can do this because they trust that their parents will be there for them (Mercer 2006).

So how has AP practices helped me with my chronic illness?

Babywearing

When I was pregnant my Hypermobile Ehlers Danlos Syndrome wreaked havoc on my body. I was wheelchair bound by 5 weeks into my pregnancy because I developed severe Symphysis Pubis Disorder (SPD)  and my Autonomic System was all over the place.

I knew that there was a pretty good chance that I would still be affected with the SPD post partum and I was right. Two years on and I still suffer with it. How was I going to push a buggy while in a wheelchair?

Babywearing was my answer. Even on days where I couldn’t wear Ollie for whatever reason, Daddy wore her. It was a lovely way for them to bond. While I liked my ring sling, he was more into the wrap type slings. My coordination couldn’t handle the wrapping at all.

Three months after her birth, I didn’t need the wheelchair as frequently but I still carried her. I knew that I wouldn’t be able to manage lifting and opening up a heavy buggy so just popping my sling into my bag was the easiest option. After the ring sling I opted for the Rock n Rolla Fidella buckle carrier it was badass. Then I switched to a beautiful pink Fidella Mei Tai before going back to a buckle carrier (Nova) as my shoulder became to sore for wrapping. The Nova hasn’t had much use as Ollie likes to walk but I do use it for when I need walk to collect Alex from school or when we are in London. We brought a stroller on holiday once and it went unused, plus it is a pain having to bring it along with the other luggage.

Me sling

In retrospect, I wish I had gone along to a babywearing group to try things out before I bought the Mei Tai. It was only after I rented a Nova from the group that I realised it was exactly what I needed, lightweight, breathable and tidy enough to go in my bag. I would absolutely recommend people to try before they buy.

Babywearing allows you to be hands free as well and baby sleeps contently snuggled into their parents chest.

Marty fence BW

It really is a win/win situation. Baby is happy therefore Mommy is happy.

I can imagine people who are unfamiliar with babywearing wondering how I possibly managed to carry extra weight with weak joints/muscles and pain.

If you’re wearing your baby correctly, you should be well supported and you shouldn’t feel the extra weight bearing down on you.

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Interestingly, I was sent a link to a blog called Babywearing with Disabilities recently. Until I began writing this post, I hadn’t opened it. Imagine my surprise to find out the woman who wrote the blog actually has hEDS too! She offers some very good advice about how to babywear when you’re disabled. Really worth a read. Further reading about the general benefits of babywearing for parent and baby can be found here.

Slings come in so many gorgeous prints and designs. Say goodbye to your shoe/handbag addiction and say hello to telling your other half “Oh I won that on a dip.”

Marty Ollie

Breastfeeding on demand

Sadly due to poor support and advice, Alex was only breastfed for just over two weeks. He had an undiagnosed tongue tie which caused me to be in a lot of pain when feeding him. Yet no healthcare professional said anything bar “it happens”. No. Breastfeeding should not hurt. That’s a different story that you can read about here.

Anyway, I remember being so exhausted when we switched to formula. Having to make up bottles in the middle of the night, dealing with reflux and constipation, the usual drama with formula was just so much hassle. Even with two of us taking turns to get up. I was also pretty annoyed that the weight that had been falling off me for the first two weeks stopped melting off me.

Luckily, armed with evidence based information and a fantastic network of breastfeeding mothers, I was determined that this time it would work out. It’s crazy the amount of misinformation being spread not just by ill informed loved ones but by actual health care professionals too. I actually interviewed one of Ireland’s leading IBCLCs and the world renowned, Dr Jack Newman about breastfeeding myths.

Anyway, unlucky for us, Ollie was also born with a tongue and lip tie. But, this time I was determined to get it sorted as quickly as possible so that we could continue our breastfeeding journey. After exclusively pumping for 3 weeks and then pumping while also    learning the skill of breastfeeding, we were on our way. Ollie is just two weeks shy of two and honestly, feeding her has been one of my greatest achievements as a parent. Breastfeeding is the biological norm but in Ireland where just 2% of babies are fed by 1 year, it’s a pretty big deal to even get to two years.

Breastfeeding forced me to relax and properly recover after the birth which in itself was pretty traumatic. I had to give birth early as my waters had broken. I ended up loosing half of my blood but the consultant managed to stop the bleeding just as they were calling for blood bags. I was very weak and ill after the birth so lying on the couch for the first 2 months while Ollie built up my supply was ideal. I didn’t have to get up in the night to make bottles and the lovely hormones released during feeding time helped me feel content and loved up. Plus with the extra hand it meant Alex could join in on the cuddles.

BF OA

Breastfeeding also meant that I didn’t have to bring a huge bag filled with bottles and powder everywhere we went. You literally just have your breasts and you grab a nappy and off you go. Babywearing while breastfeeding also meant that I could get on with whatever I needed to do while baby was getting everything she desired; being close to mama and her milk. Best part is that my meds are all compatible with breastfeeding as 99% of medications are, again unfortunately that is another piece of information that isn’t well known amongst a lot of healthcare professionals and new mothers.

You can read more about breastfeeding while being chronically ill here.

Cosleeping/Bedsharing

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We intended to have Ollie sleep in a cosleep cot that Daddy made following this hack. FYI total cost was 65 Euro in comparison to the phenomenal amount of money you spend on a store bought cosleeper crib! The new mattress was the most expensive part.

Anyway, so we had the cosleeper cot attached to our bed and by the looks of it, Ollie would fit into it until she was at least four! Well, nope, this happened:

cosleeper

You know what? It worked out for the best because having her closer to me meant she could feed as I drifted back to sleep and it became a place to keep all her clothes and cloth nappies! Now she is able to undress me and help herself while I stay asleep! Research shows that parents who bed share and breastfeed get more sleep than those who don’t.

Once you practice the safety guidelines, there is virtually no risk in bed sharing, in fact a lot of research shows that babies who are exclusively breastfed and bed share with their mothers are actually less likely to die from SIDS. You only have to look at every other species of mammal to see that the dyad sleeping together is a natural part of child rearing. Hey, the Gruffalos cosleep too!

997034-the-gruffalos-child

You can find some evidence based articles about infant sleep and bed sharing here.

As stated before, AP doesn’t have to be all or nothing. You can formula feed and babywear, you can breastfeed and use a buggy. I just know from my own experience that following my mammalian instincts has helped me to cope with parenting while having a chronic illness a whole lot easier.

Until next time,

Z.M

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