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

To the Doctors That Failed Me and to the Ones That Saved Me

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Dear Doctors,

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.

I think:

“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.

Just as I thought; I was diagnosed with Ehlers Danlos Syndrome.

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.

Doctors often tell patients it is all in their head. Telling someone this can be as lethal as a bullet.

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.

Zombified again.

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.

Is not living in pain too much to ask for?

Sincerely,

Someone who just needs help.

 

 

 

 

 

 

 

chronic illness, chronic pain, disability, disabiliy, Ehlers Danlos Syndrome, family, health, mental health, parenting, Rare Diseases, Women's Health

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, 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

 

 

chronic illness, chronic pain, dysautonomia, Ehlers Danlos Syndrome, health, reviews, spoonies, tips

The Zebra Mom Trials-Oska Pulse

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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”.

So, what is the Oska Pulse?

According to oskawellness.com:

“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.

The Zebra Mom Trials

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.

Further reading:

http://www.news-medical.net/news/20170613/Clinical-study-suggests-Oska-Pulse-as-effective-method-to-reduce-pain.aspx

Pulsed Electromagnetic Field Therapy – Dr. Kathy Davis, PhD – May2017

OSKA-PainJournal with tables – no logo

Next time I’ll be reviewing the Pill Drill I mentioned above.

Until then,

Z.M

x

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Awareness, chronic illness, chronic pain, disabiliy, health

Is gender bias affecting women’s medical treatment? The Zebra Mom investigates.

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Hey there, hi there, ho there!

So for awhile now I’ve been thinking about writing this piece as I’ve heard a lot of anecdotes about sexism and gender bias in medicine. I know myself that I’ve experienced some sexism in my time as a regular visitor to the GP and hospital.

The definition of bias: inclination or prejudice for or against one person or group, especially in a way considered to be unfair.

“When we talk about gender bias in medicine we usually either mean an unintended, but systematic neglect of either women or men, stereotyped preconceptions about the health, behavior, experiences, needs, wishes and so on, of men and women, or neglect of gender issues relevant to the topic of interest.”-Gender Bias in Medicine; Katarina Hamberg

I think the experience of sexism and gender bias that stands out to me the most, personally, is the time I went to my GP explaining I had zero libido, that it was borderline painful to have sex and that it was affecting my relationships.

The GP (who by the way was a woman) told me to just do it, that the more sex I had, the more I would want it.  Now I don’t know if I am off the mark here but I’m sure if a man went to his GP and told them that they had no libido or that it hurt to have sex that they wouldn’t be told to “just do it”.

Now, I’m not a doctor but I think I if I was, that I would at least do some blood work and if nothing showed up, refer the patient on to a Gynaecologist/Urologist for further investigation. Or you know, have a look down there to see if anything obvious stands out!

So, I wondered if there was solid, scientific evidence to suggest whether gender bias actually exists in the medical field. I have been told hundreds of stories over the years as a health journalist about women being fobbed off. Sadly, this treatment has cost women their lives.

I recently spoke at a conference in Manchester and while I was there I spoke to a GP who also suffers from hypermobile Ehlers Danlos Syndrome. When I brought the subject up of whether women’s pain is taken as seriously as men’s; she responded: “Absolutely. It’s a feminist issue, for sure.”

Of course, we can’t go on anecdotal evidence. To prove something actually happens we must look at it from a scientific point of view. I contacted the amazing Gill Roddie (follow her on Snapchat: gemeroodles) to ask her for solid articles about this issue. Gill teaches Biology in third level and is a wealth of knowledge when it comes to science. Her science snaps are definitely worth the watch, so do check her out.

Does the research show that women’s pain isn’t taken as seriously as men’s? Yes, it does.

gender bias in medicine

It’s a disturbing thought, but there is a plethora of mounting evidence to back up these anecdotes. Women’s pain is taken much less seriously by doctors than men’s, fact.

This gender bias has a number of serious implications; including that women in acute and chronic pain are left to suffer for longer in hospitals. Women are more likely to be misdiagnosed with mental health problems because women are “emotional” even when clinical results show their pain is very real.

Research has found that when women and men present in A&E with the same severity of abdominal pain, men wait an average of 49 minutes before being treated, while the average wait for women is 65 minutes. Similarly, women are consistently prescribed less pain-relieving medication, even when controls for weight are applied.

One reason for this blatant display of sexism may be that doctors often perceive women are being more irrational or emotional than men, and therefore see their complaints about pain as being ‘all in their head’ rather than having a physical basis.

Clinical studies have also found that doctors are more likely to think women’s pain is caused by emotional issues rather than physical causes, even in the presence of clinical tests which show their pain is real. Researchers J.Crook and E.Tunks found in their study ‘Women With Pain’ that women with chronic pain conditions are more likely to be wrongly diagnosed with mental health conditions than men and often prescribed psychotropic drugs, as doctors regularly dismiss symptoms as being a part of a mental illness.

I myself can back this up, again with anecdotal evidence. When I first went to my GP about my symptoms of pain and fatigue, I was told that I was depressed. Another GP told me my chest pains were caused by stress. I told him I wasn’t stressed at all and he said “Oh, well it must be subconscious stress.” Again, no investigations, just a script for Lexapro. We now know that my pain and fatigue symptoms were a result of my Ehlers Danlos Syndrome and the chest pain is either a subluxated rib or costrochronditis.

But this assumption also does no favours for the male population either. Men are seen as more rational and when they say they are feeling acute pain, doctors take their symptoms seriously as having physical cause rather than assuming an emotional basis. But what if it is emotional?

A 1990 study by Karen Calderone from Rhode Island University indicated that women are more likely to be given sedatives for pain, while men are given pain medication.

This indicates that women are perceived as being more ‘anxious’ than truly in pain.  This research suggests that doctors focus on returning women to a ‘calm and rational’ state rather than actually relieving their pain.

This means women are often left in severe pain for longer periods than men. Sedatives can make women appear calmer but all the while continuing to feel pain acutely. This means they stay in extreme discomfort for longer periods and this can lead to serious symptoms. Conditions may go unnoticed and undiagnosed through this type of medical treatment (or lack their of).

In Hamberg’s paper she noted that in a large variety of conditions, such as coronary artery disease, Parkinson’s disease, irritable bowel syndrome, neck pain, and knee joint arthrosis, men are investigated and treated more extensively than women with the same severity of symptoms.

Personally the most disturbing thing I’ve read during my research for this article is learning that the more attractive a health care professional found their patient, the less treatment they received. This confirms what most patients with invisible conditions say, that their pain isn’t taken as seriously because we appear healthy.

In the research paper ‘Beautiful Faces in Pain’ it was found that due to this “beautiful is healthy” stereotype, doctors assume people who look ‘better’ on the outside, are healthier and subsequently require less treatment. Since sexism and patriarchy is present when it comes to hierarchy in hospital settings, men are more than likely to have senior positions. They are responsible for decision making and since the majority of men are heterosexual, it seems quite possible that women’s pain is underestimated due to the perceived attractiveness by the males responsible for their treatment.

While I’m sure most health care professionals will say that they treat each patient with the same level of care, regardless of their gender, the facts and figures say differently.

You can not deny the solid, scientific facts that show that gender bias is very real in medicine.

Sexism is seen in A&E waiting rooms and hospital wards. Gender bias and sexism is present in almost every area of society, so why would medicine be any different?

Gender bias is literally physically hurting women as well as emotionally. Imagine if those chest pains I was suffering from was something more sinister? What if it was my heart giving me a warning sign? What if I ended up in cardiac arrest? I may be presenting you with hypothetical situations here but, for many women, this has happened and sadly, it has cost them their lives. Until gender bias and sexism is rectified in medicine, women will continue to face difficulty in accessing appropriate treatment.

Until next time,

Z.M

x

Awareness, chronic illness, chronic pain, dysautonomia, Ehlers Danlos Syndrome, family, Friday Feelings, health, spoonies

Friday Feelings with The Zebra Mom

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Hey there, hi there, ho there,

This week I didn’t have any guest post submitted so, I decided to do a Friday Feelings post myself.

Usually I explain what my guests suffer from and a they tell us a little about themselves but I’m sure anyone who follows my blog is well aware of my conditions and the things I am passionate about. I will take the oppurtunity to plug my social medias though :p You can find me on Facebook, Twitter, Pinterest, Instagram and Snapchat (see the snap code in the header)

evie blog

So we will just dive straight into this week’s Friday Feelings post

 

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“Dear Diary,

It’s Friday and for once, I’ve had an excellent night’s sleep and I’m feeling relatively OK. Usually I wake with something wrong but luckily, I have no more pain that the usual aches. I am so happy that I’m feeling well as can be since I am celebrating my 30th birthday tonight with family and friends. It is not often I get to socialise and get dressed up so when it does happen I appreciate it so much. I’ll probably run low on spoons after I finish getting myself ready but I am hoping the adrenaline will kick in and help me enjoy my night. I also have to be weary of certain lighting in pubs as my sensory issues can cause havoc when I do get the chance to go out. My typical Friday nights are usually much more boring. I sit at home and spend my time watching the Gilmore Girls or socialise on Facebook.

Even though I feel OK right now the last few weeks my EDS and Dysautonomia has been acting up a good bit forcing me to use my wheelchair. I hate using it, it makes me feel very self-conscious but I know I would be much worse off if I didn’t use it. Yesterday we went into the city to take our little boy shopping for new party clothes and if I didn’t have my chair, I wouldn’t have been able to enjoy our time. It’s a frustrating time for us at the moment as we are currently fundraising to get back to London for treatment. This 5-night trip is costing us 5,000 Euro. Luckily I have some really good friends and family who helped us raise 765 Euro a couple of days ago at our coffee morning. We couldn’t believe that that amount was raised in just a couple of hours! The community really came together to support us. I was truly blown away.

The future is uncertain but I am hopeful that getting treatment in London will give the children and me a fighting chance at some normality. I am having Autonomic tests in London to find out exactly which type of Dysautonomia I have. Here in Ireland I have been diagnosed with Orthostatic Intolerance and Vasovagal Syncope but the experts in London believe I have Postural Orthostatic Tachycardia Syndrome (PoTS). They believe Alexander also has PoTS but luckily he isn’t greatly affected. I also see symptoms in Olivia too.

I think as time goes on, people are understanding our conditions better and know that they are invisible illnesses and that some days I need my wheelchair and some days I don’t. I think the fact that we have had to go to the UK and fundraise thousands made people realise the severity of our conditions. It’s a shame that it has had to come down to this but I am content that those nearest and dearest to us take things seriously. I have had negative experiences with the way people has viewed EDS before. One doctor said that people with EDS didn’t suffer from chronic pain (I know, I know) and that I more likely had Fibromyalgia. Now, many experts do believe that most people diagnosed with Fibro have actually been misdiagnosed and that they actually have some form of Connective Tissue Disorder. I told her this and she was most unimpressed to be challenged. Pregnant and wheelchair bound, I left that appointment in tears in pure anger and frustration. A Rheumatologist diagnosed me with hEDS at that point but I saw another one to confirm the diagnosis because I felt the private consultant’s diagnosis wasn’t being taken seriously. I had the diagnosis confirmed by two experts in London so I am pretty confident hEDS is the right fit but I am going to have genetic testing just to be sure as I do fit a couple of the types of EDS too. I think anyone diagnosed with hEDS should have genetic testing to rule out other types and other Connective Tissue Disorders. If the tests come back clear, I’ll be happy sticking with the hEDS diagnosis.

Anyway, better start getting ready for my hair appointment and party. Wish me luck that my EDS or Dysautonomia doesn’t kick off!”

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.

Till Sunday,

Z.M

x

 

 

 

 

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

Friday Feelings with Irish Dysautonomia Awareness

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Hey there, hi there, ho there!

This week I spoke to Lette from Irish Dysautonomia Awareness. Lette suffers from Hypermobile Ehlers Danlos Syndrome (hEDS) , Postural Orthostatic Tachycardia Syndrome (POTS) , Sphincter of Oddi Dysfunction (SOD), Neurogenic Bladder Dysfunction and Gut Dysmotility, to name but a few of her conditions. You can find Lette on Twitter, Facebook and Instagram.

Lette
Lette and her baby, Boo.

Hi I’m Lette. When I’m am able for it I love to play retro video games, photography, drawing, craft, listen to music. I like to internet hop and watch shows like Game of Thrones, The Walking Dead, The Expanse and Black Sails with my wonderful husband and our little dog Boo.

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

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“Dear Diary…

It’s another Friday, they have begun to all feel the same these days, days melting into weeks, melting into months that float by me at high speed and I still seem to be stuck here in my bed, in a dark room, feeling putrid!

Motivation seems to have upped and all but disappeared. I think of all the things I have achieved throughout my life before I got very sick and everything went downhill in 2011. I got my art degree, my Masters of science, worked as a fitness instructor, (can you imagine?) as a wedding and events photographer and videographer, as a teacher in adult education and as a lecturer in third level. That was just education and work, when I had the proper use of my legs and body, my husband and I used to just love going hiking through the wild woods and lakes of Killarney with the dog and cameras in toe, I loved to drive and cycle and swim and walk aimlessly through fields for hours with the camera just because I could and I felt immense joy in looking back at and sometimes editing the photos and the memories I had captured while out.

I used to love drawing, animals especially and now it has been so long since I lost myself in any art. I forget what it’s like and I miss it but the energy is never there in recent times for me to act on that longing.

I don’t do any of these things anymore, I find I am spending more and more time in bed as I am just not capable, the majority of the time, of being upright. Either I am in severe pain with my gut issues or severe pain in my hips and shoulder joints, or the worst pain at the moment is coming from the back of my head / base of my skull / top of my neck pain which causes white blinding headaches where I can do nothing but lie in a dark room and moan. No phone, no laptop, no reading, no entertainment. Just darkness and constant pain and nausea or POTS issues where my blood pressure is so low I can hardly turn over in the bed. It wears you down.

The only time I get out these days is not to visit friends or family like I used to regularly do, but instead to go to hospital and consultant appointments and even then I have to reschedule many because I am too ill to go!

I’m getting gloomy but I don’t mean to be, because something different happened yesterday. I had to update the house insurance! What? Bear with me! Honestly, it gave me a sense of purpose, for all of those 15 or so minutes I had something, relatively important, to do and it felt good!

This morning I helped make the breakfast with the husband, put laundry washing on, picked up the Nintendo DS for the first time in ages and played Earthbound and I even had a shower. This may sound utterly silly, but to me, these are huge achievements! The shower is a funny one, I actually have to way up my energy for the day against the effort of a shower and believe me, I may not have the energy for days. It can get a tad funkay in fairness!

So while many friends of mine will be going out on the town later tonight or this weekend and I know a few others who are jetting off on a few days holidays in Europe, all I can achieve is having a freshly washed dressing gown, a nice shower, fresh fluffy socks and a hot cup of tea! Where once I would have drowned my sorrows in that cup of tea, tonight I am smiling because I know its ‘the little things’ that should and do count the most.

I have so much to be happy for. My wonderful husband, our amazing dog, my loving family and friends, the generosity of strangers who have helped with my medical fund, a relatively successful blog and related social media links, my talents have gotten rusty but I can get them back if I just try even one new thing every day.

Anyone can achieve anything if they just try and thats alright with me!”

A big thank you to Lette for taking part in our Friday Feelings blog.

Do you relate to Lette’s entry? Do you find joy in achieving what most people would take for granted in being able to do? Comment below and let us know what you thought of Lette’s entry.

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.

So until Sunday

Z.M

x

 

 

chronic illness, Ehlers Danlos Syndrome, family, health, Rare Diseases, recipes, tips

9 ways to keep the romance alive when you’re chronically ill

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Hey there, hi there, ho there!

So last time we discussed how sometimes people forget that life for the chronically ill person is far more difficult than a carer’s. I briefly touched on how relationships can dwindle from lovers to a carer-patient relationship when your signifiant other is acting as your carer. So, with that in mind, let’s look at some ways you and your partner can keep things romantic even when chronic illness tries to intervene. A lot of the things I’m going to talk about can be applied to any couple that may have let the romance die out a little.

Kiss. 

When you’ve been with someone a long time, sometimes you genuinely forget to kiss-even if you’re not chronically ill.

“Even just a quick touch of the lips.”

When you’re so busy concentrating on your illness and/or family life it can be easy to forget to just stop and have a moment together.

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Do something together at least once a month.

Whether it’s getting in some alcohol free wine/beer, watching a romantic movie or having dinner together-make the time to spend a couple of hours together not talking about family/illness etc. Even a gentle stroll on the beach/ woods while holding hands can be just enough to keep that flame-a-flickering.

Go back to where you first met.

If it’s possible, go back to the place where you first clapped eyes on each other. Try and remember how you felt that day. Recreate your first date. Go to your friends house and help them get you ready.

“Have your partner pick you up or meet you at the place where you had your first dinner/drink together.”

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Do something nice for each other.

It doesn’t have to be a birthday or a special occasion to do something nice for your significant other. It doesn’t have to be a grand gesture or anything expensive. Write a love letter and leave it somewhere for them to find.  Make a playlist of all their favourite songs or songs that remind you of them. Run a bubble bath, light some candles and let them have some time to themselves.

source

Massages

Get some nice oils, light some candles and help get those pesky knots out. PLEASE do be careful if you’re massaging someone with a hyper mobility syndrome-last thing you want on your romantic night is to end up in A&E!

Go on a weekend break/holiday.

If you’re like me and are seriously affected by low pressures and crap weather, you might appreciate getting away to somewhere warm (but not humid).  A nice week away to the Mediterranean can give you and your partner a break from pain and all the other symptoms associated with your condition.

Renew your vows.

You don’t need to recreate your wedding day-unless you want to. You can simply organise to renew your vows with your priest/registrar/humanist. You can do it alone or just invite your close family and friends.

source1

I love you.

Those three simple words should be said every day. Whether it’s first thing in the morning or last thing at night.

“Let your significant other know that they are loved.”

Just like kissing, sometimes it can be easy to forget to say it. Especially when brain fog is a factor of your illness. Set a reminder if you have to!

Sexy time.

If you can do it and want to, go for it. 90% of the time us spoonies don’t feel sexy or attractive. Sometimes you gotta make yourself look good on the outside to help you feel better on the inside. Make yourself feel sexy by having your hair/ make up done. Have a relaxing bath, shave your legs (if you want), get into a nice nighty or PJs. Do whatever makes you feel good about yourself. Sometimes after all that effort-the last thing you want to do is to do the horizontal mambo but if you still have some spoons left and you’re not in too much pain, use that last bit of energy to make lurve. Remember, you don’t have to necessarily have to “go all the way” sometimes some heavy petting can be just as nice.

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Till next time,

Z.M.

x

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Awareness, chronic illness, Ehlers Danlos Syndrome, family, health, Rare Diseases, spoonies, Uncategorized

Being Chronically Ill means..

5 Comments

Hey there, hi there, ho there!

Hope everyone had a nice break over the holiday period and that you’ve recovered from all the travelling, cooking, early mornings and late nights.

In latest news I’m very excited to announce I have been asked to speak at a medical conference in Manchester this coming May. The conference is to educate and raise awareness of Vascular Ehlers Danlos Syndrome. I am truly honoured to have been asked to address medical professionals from all over the world. It’s a massive responsibility to represent the EDS community and I will do my best to explain the struggles we all face.

Anyway,  I just wrote this piece for a bit of a laugh. I’m not trying to be a negative ninny (in case somebody doesn’t pick up on my sarcastic tone), I will get around to writing part two of my trip to London shortly. I know some of you were eager to read about prices and places to stay etc.

Hope you enjoy my latest blog!

One day of fun=several days of a flare up.

You’ve taken your meds, you’re feeling as well as can be. You put on your glad rags and you make it into the car. Even doing that much your energy levels start to drop and your pain levels start to rise but God damn it, your going to this party. You’ve been staring at the same four walls for weeks now. Even if you have to walk in with a cane or arrive in your wheelchair, you are going to spread your wings and be a social butterfly for one evening.

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You manage to spend an hour or so catching up with friends while listening to how “you look great and you’d never know you were sick by looking at you” when all you wanted to do was forget you were sick for one night. But getting out is worth being someone’s inspiration porn.

You go home and fall into bed. This is where you stay for the next few days only crawling out to use the toilet or to grab a packet of crackers to stop yourself from starving to death.

You have more sets of PJs than actual clothes.

You spend more time at home than you do outside so it’s only natural you’d spend a lot of time in what you’re most comfortable in. While many of us would prefer to get dressed and glammed up to make ourselves feel normal, others just don’t want to waste energy on putting on clothes and make up. A lot of the time you choose between getting dressed or putting on a load of laundry or ya know, eating?

Hey! If these dudes can walk around in their house all day in their PJs, why can’t I?

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Your bed is your best friend and your enemy.

When you’re ill a lot of the time your bedroom becomes your place to escape so that you can rest and recover. Unfortunately you do end up spending a lot of time in bed and sometimes it can be for several days. You can often end up resenting your bed. While the majority of society love their beds, people who are chronically ill associate it with being in pain.

You often develop a less than desirable odour.

When you’ve been in bed for a day or so, you develop a very specific smell. It’s a mix of sweat, anguish and food that you’ve spilled on yourself. Getting up for a shower can be very tough on our bodies. Again, it’s about picking and choosing what you spend your energy on. Bathing or making dinner. The kids have to eat. The smell won’t kill em but starvation probably will.

When you do get round to washing  yourself you feel somewhat human again. But then you have to go lie down.

If someone were to shake you, you’d probably rattle.

You can never just have one chronic illness. No, no, no. There’s always a domino affect. Your main illness causes all sorts of weird and wonderful sub conditions. Consequently you take a whole lotta pills to keep yourself functioning. You’ve got one cupboard in your house that looks like a pharmacy, you have to brace yourself when you open it as more often than not, something falls out. People are always shocked to see it and know that if they get a headache while in your home you’ll have an array of pills to kick that sucker’s ass.

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A successful day for you is getting dressed and actually leaving the house.

Just grabbing whatever has been tossed at the end of your bed and leaving the house to buy food or collect the kids is enough to gush about when your significant comes home from work. Victory is yours!

You get annoyed listening to people crib about having a cold, going to work or having to go to out socialising with their friends even though they are so00 tired.

Many of us can’t work or leave the house when we want so don’t complain and tell us “I know how you feel” because you have a cold. Difference is you’re going to get better. Oh no! You have to go to a Christmas party? My heart bleeds for you.

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You have watched anything worth watching already.

Netflix and chill doesn’t mean the same thing to us. It literally means to binge watch shows while doped up to our eye balls on pain meds. Many of us will tell you we have spent many a day watching OITNB while curled into the foetal position because said meds aren’t working.

Till next time,

Z.M

x