I came to you as a scared, vulnerable teenager. I was in pain and tired all the damn time.
“You’re depressed”, you said.
I walked out with a script for antidepressants. I hoped this would fix everything.
No such luck. I am a zombie. I didn’t care about anything. My friends are scared for me.
Months later I return with the same complaint. My joints hurt. I’m still tired. A new symptom arose. Chest pain.
“You’re stressed”, you said.
“I don’t feel stressed”, I responded.
“Subconscious stress,” you said.
I walk out with another script for a different antidepressant and sleeping pills.
This goes on for years.
It’s all in my head, you said. That the “physical symptoms were a manifestation of something psychological”.
Those words made me genuinely depressed. I wasn’t being listened to. The weight piled on, intensifying my depression. I didn’t feel like this body was mine.
You didn’t listen.
I became pregnant and things escalated.
“It’s just the pregnancy”, you said.
I moved clinics to find a doctor who would really listen to me.
Once again, I explain the pain, the fatigue, the stomach issues, the dizziness, my heart racing and pounding in my chest.
I came to you as a scared, vulnerable mother. I was in pain and tired all the damn time.
“You’re depressed”, you said.
I walk out with yet another script for another antidepressant. The fifth medication of its type that I’ve tried.
I am in too much pain and too tired to function. I can’t muster the energy to get dressed. My friends and family don’t understand. Being judged for being in my pajamas all day. I am just lazy.
“If this is all in my head, and nothing is working, what is the point in living?”
There were days I looked at my pills and thought that if I took them all, that the pain would end, that I would be free and I would no longer be a burden on my family.
I fight the urge and win.
Three years later, while just about managing an internship, I interview a woman with Ehlers Danlos Syndrome. Her story sticks with me. The doctors didn’t believe her either. Nor were they willing to help.
A year later I speak to this woman again. We get to talking about my issues.
She asks one thing that changed my life forever.
“Are you hypermobile?”, she asks.
“No”, I say.
“I’m stiff as a board!”, I exclaim.
Turns out I am. Very hypermobile. I score 8/9 on the Beighton scale.
The woman gives me the same of a doctor to see. I decided to see what you, my doctors thought.
“Could it be Ehlers Danlos Syndrome?”, I ask.
“Oh God, no! That’s as rare as hen’s teeth,” you say.
I leave, defeated.
One November day, I faint at home. That’s it. I need answers.
I go to see the recommended doctor. My stomach is in knots. That’s normal before I go and see doctors of any type now. I prepare myself to be told the same old thing. That I was depressed, I was anxious, that it was all in my head.
I am examined, I am spoken to with respect, I do not feel like a neurotic child.
“No wonder you have been depressed. Nobody was listening to you”, he says.
For the first time in my life, a doctor really listened, like no other doctors had done before.
Tears stream down my freckled cheeks with relief.
I walk out, cigarette in my hand, shaking with relief and with disbelief.
Finally! I was listened to. Finally, I have my answers.
A letter is sent to you, confirming my suspicions.
Nothing changes though, I suspect you don’t believe the diagnosis.
I never took another antidepressant after that day.
It was all over, or so I thought.
Then I soon realised, the diagnosis meant nothing without someone to help.
And here I am, six years later. I am bouncing from consultant to consultant. Medicated up to my eyeballs. No real investigations are done and some tests are simply not available in my own country.
To England, I go with family in tow. My two children now facing the same life of disbelief and pain.
But things are different here.
I meet you, dear doctor, for the first time.
You are small and sweet. You’re gentle and kind.
I feel safe with you. You are thorough.
I had no choice but to travel and spend money we did not have, but I am glad I did.
You really listened and didn’t brush me or my feelings aside.
So many from my country have been here before. Desperate for help.
A world expert’s diagnosis, that will shut the rest of them up.
And it did. No more questioning on whether this was the real diagnosis.
I had wondered myself if the diagnosis was correct because all the others, these “experts” made me feel that way.
I return home. The rain pours as we land. It matches my mood.
I am coming back to a country that does not care about my well-being or my children’s.
I jump to another doctor after another again. And again, questions the diagnosis. I am so sick of doctors at this point. But, this next one is different.
You really seem to care.
There is no rush, you have taken the time to listen.
You follow my lead, you let me take the reins on my treatment.
I almost jumped for joy leaving the doctor’s office. I could not believe my luck.
You seemed determined to help.
My pain worsens. I am a ball of tears every time I see you now because I am at the end of my tether. Other doctors want to try these expensive treatments that may not work. They haven’t worked before. I just want relief from the pain.
I just wanted you to tell me you’ll help.
Yet I walk out with a script for antidepressants-again.
The memories flood back, of not being believed. I am now a nervous wreck going to any doctor again.
I take the first pill. It begins again.
I can’t get out of bed, I am more tired than ever.
Sleeping for three days after taking one of those tiny pills so I don’t take anymore.
I return to you, scared because the pain is as bad as it’s ever been.
Feeling like the tin man, I just need some oil to move with ease.
“Anti-inflammatories will help”, you say.
I take the script, skeptical.
It’s still early days but I just know this isn’t going to work.
Something is very wrong with me.
I can’t keep fighting for help, doctor. I am already too tired.
Is it so much to ask to just want to be normal? To be like my friends.
There is only so much I can do on my own.
I am trying, really, I am to be normal.
Distracting myself with things that I can do.
I just want help with the things I can’t manage alone.
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).
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:
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.
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.
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”.
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.
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.
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.
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.
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.
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:
The Eighth Amendment equates the life of a woman to that of an embryo.
The vast majority of women who want and need abortions are unable to access them in Ireland under interpretations of this law.
Women have already died in Ireland having been denied life-saving abortion procedures.
At least 150,000 women have travelled to other countries to procure abortions since 1980.
Thousands of women are unable to travel for abortion services due to family, legal status, financial situation, or health.
People who procure abortion within the country risk a 14 year jail term. Doctors can be jailed too.
The majority of people in Ireland support much wider access to abortion than is permitted under the 8th Amendment.
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 firstname.lastname@example.org
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.
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
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.
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
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.
*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
“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]”.
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.
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:
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.
It was rapidly turning into the labour I was hoping to avoid.
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.
C-section and episiotomy were threatened against Jennifer.
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.
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.
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.
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.
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 email@example.com
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.
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.
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.
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.
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.
Put dishes in dishwasher
Put on your shoes, coat and schoolbag.
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.
Check for notes in bag about school trips or events
Make sure books and pencil case are in the bag
Have your own clothes ready for the morning
Keys ready by the front door
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.
Set your alarm.
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.
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!
I have been given this product as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.
Hey there, hi there, ho there!
So, I’m on a mission right now to find the best gadgets for “spoonies”. Things that make life bit easier can mean the difference between living a normal life and being bed bound. Last time we looked at the Oska Pulse which is a truly life changing device. However, there are some meds that I still need to take multiple times on a daily basis.
I am useless at remembering to take my meds. Brain fog has a lot to answer for that. So I could just set a reminder on my phone, right? Yeah, I could but I live in a house where the minute you set something down, it gets swallowed. Plus, when the alarm goes off, I usually just silence it and if I’m in the middle of doing something I say to myself “Yeah, I’ll get my meds there in a minute.” Then I forget and wonder why I’m in so much pain or feeling dizzy an hour or so later. This is where the Pill Drill comes in.
What is a Pill Drill and how does it work?
Wired.com have described the Pill Drill as “the FitBit for taking medication”. I couldn’t agree more (not that I have a FitBit).
So the first thing you need to do is to set up the hub. The hub is the heart of your kit. Once you set it up in whichever room you tend to keep your meds, it will remind you when to take your meds and keep track of your intake.
Once you’ve taken your pills, you scan the pod from your weekly pill strip. Each pod has a built in scanning tag. The lids are very easy to open and close. Which is handy for people like me with weak hands so ensure you keep it out of reach of children.
The weekly pill strip comes with two pods for each day (e.g Monday 1 & Monday 2). If you take pills more than twice a day, you can order extra pill strips (RPP $29.95). The pill strip also comes with a strap to keep the pods secure while travelling.
In Ireland we generally don’t get medications in pill bottles but rather in boxes so I haven’t used the scanning tags myself. But, if you have pill bottles, you can attach scanning tags to them. You will receive 12 scanning tags (A-L). You can order an additional tag set should you need them (RPP $12.95). They would also be helpful for items such as inhalers, injections eye drops or other irregular shaped items. The tags are can be placed in the three tag holders provided. More are available should you need them ($4.95).
In addition to scanning your pill pods, you can also scan your mood cube. The cube has five faces which displays a range of feelings you may experience on a day to day basis. These include: great, good, OK, bad and awful. The cube will register your mood and track health patterns over time. This cube is also especially handy for those who care for loved ones. If you’re not around, you can be notified in how the person taking the meds is feeling over the day. Once you scan, the carer/family member/loved one will be instantly notified. This is an optional feature.
The Pill Drill app syncs with your hub in real time. Here, you can edit and modify doses, receive reminders and log doses, receive adherence updates and track mood and symptoms. The app is totally optional.
My thoughts on the Pill Drill
I did have slight issues setting up the Pill Drill and connecting it to the WiFi. It didn’t take long for us to sort it out though. If you are not tech savvy you might need someone to give you a hand. The Pill Drill website does have an FAQ page to answer the majority of questions you may have in setting up.
Once everything was set up, it was pretty easy to use. I no longer forgot to take my pills and taking them at a scheduled time every day did improve my symptoms.
Each week my husband fills the pill pods (I find it very difficult getting pills out of their trays) which means I don’t have to spend five minutes fumbling around trying to get pills out each time I needed to take them. I do need to order a second set of pill strips as I take some meds up to four times a day. Pill Drill states that they ship to the US, Canada and Australia but you can contact them if you would like to order them in your country. I will use my addresspal (An Post) account to have the extra strips delivered to me.
The kids enjoy scanning the mood cube for me. I didn’t use the option of linking the Pill Drill to my carer but I do plan to do this as he is away for entire days every week or so. I really like the availability of this feature for those who do need caring for. It is reassuring to know that even if you’re not around, that you can make sure the patient is not putting themselves in danger or causing unnecessary symptoms by missing their meds. Knowing how their feeling is lovely too. If you get a notification that the patient is feeling very unwell, you can go to them/call them/doctor.
The app is really only needed if you need to modify dose and/or are out of the house and away from the hub. If you’re away from the hub, your phone will remind you to take your meds and you can log your dose so that you your adherence score stays consistent. I would recommend relying on scanning the pills on the hub rather than logging the dose on the app (if you’re at home) so that you’re not tempted in knocking off the alarm the hub makes. This is because you may forget or delay to take your meds. So if you’re home, use the hub as consistently as possible.
One thing that would make the Pill Drill even better is a feature to remind you to order more pills from your doctor and/or pharmacy. Since it tracks your in take already, I imagine it wouldn’t be difficult to incorporate such a feature. You might say you would know how many pills you have left seeing as you put them into the pill pods each week but if you suffer from brain fog, you live a busy life or someone else is filling your meds, you may forget to order a new script.
Product rating: 4/5
The Pill Drill Smart Medication Tracking System retails at $199.00 with a 30 day money back guarantee. The kit includes:
Pill Drill hub, 2 pill strips (Monday-Sunday x2), 12 scanning tags, 3 elastic tag holders and the mood cube. The app is available on the App Store (Apple) and Google Play (Android).
This week I spoke to Emma from My EDS Journey. For a number of years Emma worked for a local charity helping people with disabilities but she has had to cut the number of hours that she can work dramatically as her condition, Ehlers Danlos Syndrome, has become unstable.
“Hi everyone, my name is Emma I am 40 and I live in a very nice area of the south east of England. I suffer from hypermobile Ehlers Danlos Syndrome (hEDS). This affects me in a number of ways, but mainly mobility, gastric, autonomic and pain are my problem areas.
My biggest passion is singing and I absolutely love musical theatre but unfortunately at the moment due to my current condition singing lessons and theatre visits are on hold! I took up blogging about 6 months ago as an outlet to communicate with others in a similar position to me and so we can share our knowledge and experiences living with a chronic condition. You can find my blog at http://edsjour.blogspot.com/edsjour.blogspot.com
Now that we know a little a about Emma, let’s look at her Friday Feelings entry:
Today is Friday, with most people I expect looking forward to a busy and varied weekend and perhaps socialising or spending time with friends and family. For me however, this evening will be the same as any other, curled up watching TV or listening to music while trying to get comfortable.
My energy levels are currently very low and I am going through a bad period with my EDS, I wonder what my next problem will be as something new is always cropping up!
I like to take each day as it comes and not think too far ahead as my health is unpredictable and thinking about the future is scary and uncertain.
Due to the nature of EDS and it mainly being invisible to others, a lot of people don’t understand how it affects us, they may say “you are looking better today” or “ you need to keep up your exercises” as though these words are a magical cure.
I only wish they could see what is going on in the inside and then they would understand the phrase “make our invisible visible”.
A big thank you to Emma for taking part in Friday Feelings and being so open with us. Can you relate to Emma and her feelings of uncertainty about the future? Let us know in the comments below!
Want to write your own Friday Feelings entry?
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 firstname.lastname@example.org
Be sure to put “Friday Feelings” in the subject bar.
Havin’ a bit of fun today with this tongue in cheek article. I was just thinking about all the things that can potentially hurt me-that wouldn’t hurt a “normal person.” The list was pretty funny so I thought I’d share them with you. I try and see the funny side of my illness. Nothing like a bit of comic relief!
Breathing is vital to our survival. However, many people with Ehlers Danlos Syndrome suffer from a condition called Costrochronditis. It kind of feels like your having a heart attack and can make breathing very painful.
Again vital to our survival and yet, many of us have serious trouble with eating. Eating the wrong thing can cause pretty horrible side effects such as Tachycardia. If you suffer from Mast Cell Activation Disorder (MCAD), something you have been previously been able to eat all of a sudden causes an allergic reaction. Then there’s Gut/Bowel Dysmotility and Gastroparesis…
Many people with EDS suffer from Chronic Fatigue. We will spend weeks sleeping like we are hibernating for the long night. Then there are weeks where we suffer with insomnia. Our sleep patterns tend to be all over the place and we tend to be night owls in general.
I’m not talking specifically about alcohol here. No, even drinking a glass of water can cause issues. We do have difficulty swallowing so sometimes we will either cough and splutter while the water goes down. Then there are times when the water goes down the wrong way or even cause us to bloat so badly that we look pregnant. As for alcohol? Yeah….just no. Tachycardia, MCAD flare, nausea, vomiting, THE APOCALYPSE.
Moving is like an extreme sport to us. Even on our good days we are afraid to move for fear we might injure ourselves. We are clumsy AF so there’s a pretty solid chance we are going to walk into a wall/table, trip over ourselves or trip over literally nothing.
“God, it must be so great not having to work” *insert eye roll here* We would love to be able to work, some of us can and that’s brilliant for so many of us our working lives are over long before we even get our first grey hair. Being stuck at home is not all it’s cracked up to be, you know?
Yep. Even sex can be detrimental to us Zebras. Ever dislocated a hip while having sex? Um…no…me neither…
Yep, simply yawning can cause pain. Anybody with TMJ Dysfunction will know this.
You: “What was that?!”
Me: Oh just my jaw popping out of place.
You’ve finally managed to have a good night sleep, you wake up, have a lovely big stretch and then….POP, POP, POP, POP.
Side effects of laughing include:
Your funny bone may get tickled but it also might pop out of place.
Yes, even bathing cause some pretty nasty symptoms such as our POTS and Hypotension to flare up. Do you really need to wash your hair today? Like, is it a special occasion?
I’m not talking about bungee jumping or horse riding here, people. I’m talking about sitting on your butt, watching TV and KNITTING. Yep, even knitting can cause an injury. Dislocated wrists will put you off knitting for life.
Taking our meds
Never mind the difficulty having to swallow giant pills or multiple pills. Most of us can do that dry after awhile but when the side effects make you feel worse than the symptoms you are actually treating, you know you have a problem.
Is it hot and humid? Pain in the muscles. Cold? Pain in the joints.
Have anything to add to my list? Let me know below!
I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.
Hey there, hi there, ho there!
I contacted Oska Wellness a few months back as I had heard about the Oska Pulse and had seen some reviews. I’ll be honest, I was skeptical. But, my curiosity and desperation got the better of me so I made contact with Steve Collins one of the founders of Oska Wellness. He requested a Skype call and what a call it was! I felt as though I was talking to a friend, we spoke about music, Ireland and his family heritage. We spoke about the device and I was carefully hopeful after hearing about some of Steve’s stories. Steve told me “be skeptical, but don’t be surprised if it works. You won’t even realise it’s working, one day you’ll find you’re doing something you haven’t been able to do for a long time”.
“Oska Pulse mimics the body’s own recovery processes to relieve pain, muscle stiffness and inflammation, using optimized pulsed electromagnetic field technology (PEMF) to encourage recovery at a cellular level.” It is a first grade, FDA approved medical device.
What are Electro Magenetic Fields?
Sounds a bit Star Trek, right? Ok, so I’ll break it down a bit.
So first of all, I think it’s important to know what electromagnetic fields are and how important they are to our survival.
The Earth has it’s own electromagnetic field and without it, we wouldn’t be here. The Earth’s magnetosphere is a shield that protects us from the powerful solar winds given off by our sun. Without it, our atmosphere would be blown away out into space.
We all use this technology on a day to day basis. Our phones, microwaves and computer screens all emit electromagnetic fields.
So how does this technology work as a therapy?
PEMF therapy is applied by running an electrical current through a copper coil which creates an electromagnetic field.
This type of therapy is said to improve circulation. With improved circulation, your cells are in a much better condition allowing your body to heal more effectively.
Electromagnetic field therapy has been in use since the invention of electricity. It was widely adopted in East and Western Europe but its use was restricted to animals in North America until recently. Veterinarians became the first health professionals to use PEMF therapy, usually to heal broken legs in racehorses.
In 2004, a pulsed electromagnetic field system was approved by the FDA as an adjunct to cervical fusion surgery in patients at high risk for non-fusion.
Although electricity’s potential to aid bone healing was reported as early as 1841, it was not until the mid-1950s that scientists seriously studied the subject.
Ok sounds great, right? But if you’re like me, you’ll want some hard core proof this technology works. So I did a bit of reading about PEMF. I read some articles and reviews and it gave me hope but, I was still a bit skeptical about whether it would work for Ehlers Danlos Syndrome. After all, it’s been noted as one of the most painful conditions.
So it arrived after a couple of weeks. I charged it for awhile and used it that evening. My science fanatic husband used an EMF detector on the device and sure enough, the Oska Puse was emitting electromagnetic pulses every few seconds.
A few weeks later my husband was refilling my Pill Drill and he called into me ” Babe?! You know you haven’t been taking your painkillers, right?”
I stopped and thought about it. Lo and behold I realised I was only taking two Tramadol in the morning. I had previously been taking the max dose (400mg per day).
I upped my use of the Oska to see if it would help my Dysautonomia symptoms as Steve had told me a young woman with POTS had noticed an improvement with her symptoms. Once I upped my usage, I did notice a difference with my POTS symptoms.
So how do you use the Oska Pulse?
Please note that if you have a pace maker or internal defibrillator you will not be able to use the Oska Pulse.
The device is about as small as a phone and can easily fit into a pocket or handbag. A strap also comes in the package so you can simply strap it on to you as you get on with your day. I use mine first thing in the morning for an hour. I use it again in the afternoon for about 2 hours and then finally another 2 hours in the evening. You can use it while on the computer working, reading a book or even making the dinner.
Skeptics might say this device is producing a placebo effect but we were both skeptical from the beginning. I went to my pain specialist just last week and told him about the Oska Pulse. He was in absolute agreement that this technology works and he was not surprised at all that the device was working for my chronic pain. This pain specialist has an amazing reputation and is highly regarded in his field here in Ireland so for him to believe in this product and technology, it says a lot. I know this isn’t a placebo effect.
I’m now thinking about possibly working outside of the home, something I haven’t done since 2012. I’m pushing my daughter on the swing and playing hide and seek with the kids. My day to day pain has all but vanished.
Now, of course no tablet or device is going to stop me from dislocating and stop the pain that goes with it. But knowing that the horrible day to day excruciating pain that I normally experience is not going to stop me from living my life, has given me hope. Once I start getting my injections into my hips and spine, I should hopefully be in a position to throw myself into physiotherapy. Getting myself strong should reduce dislocations so between the Oska Pulse, injections and physiotherapy, I will hopefully be able to go back to the old Evie who danced, played tennis, went horse riding and a social life.
The Oska Pulse has put in me in a position to start my recovery. I can start seeing the light between the trees. Not using pain killers has also made me feel more clear headed and the rebound pain I often get from using Tramadol has disappeared. Using Tramadol over a long period of time can have a number of pretty nasty side effects which I started noticing.
If you are like me living with chronic pain that has stopped you living your life, you should definitely try the Oska Pulse. You have nothing to loose. Oska Wellness offers a 90 day money back guarantee so if it doesn’t work for you, you can simply send it back.
Product rating: 5/5
If you would like to try the Oska Pulse and receive a $55 discount click the link here. Or you can use the coupon code 180387 at the checkout! For more information, see the Oska Wellness Facebook page.