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.
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.
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.
The Eighth Amendment affects people who have the ability to become pregnant In Ireland.
The Eighth Amendment states that the foetus has the same rights as the person who is pregnant. Ireland and Malta are the last two European countries where abortion hasn’t been made legal. The Eighth Amendment was added to the Irish Constitution in 1983. It means that abortion services are unavailable in Ireland. Even in the case of fatal foetal abnormalities or when a woman becomes pregnant as a result of rape. Approximately 12 Irish people per day are forced to travel to the UK to have an abortion.
Last week we discussed how the Eighth Amendment affected women during pregnancy and birth. This week we are going to explore how the Eighth affects people who are sick and have the ability to become pregnant.
Fellow blogger, Cripple, Baby! has kindly allowed me to share her story. Catherine like me, has Ehlers Danlos Syndrome.
How the Eighth Amendment could have affected Catherine with Cancer:
For me, the Eighth Amendment brings to mind of when I was diagnosed with cancer, back in 2013.
No I was not pregnant, no I was not planning to become pregnant, and no I was not planning on having an abortion. Yet the tone was set for many a discussion around such subjects, the very minute I was diagnosed.
One might assume this conversation would take the form of discussing options for egg preservation, in case of future fertility problems. Although this was never mentioned really, only glossed over. A simple “I’m sure you’ll be ok” was all that was given in this respect.
My period was a good sign
Something I realised was vastly different from the experiences of UK cancer patients, through discussions on support forums. I can only assume such options aren’t granted free by the HSE, and perhaps some doctors just see it all as a bit “icky”? I really have no idea. In fairness, I never pushed the issue. The only guidance I was given with that side of things was the nurse whispering to me during chemotherapy inquiring about my periods, stating that a regular flow was a good sign at least.
No, this was not the route of the pregnancy conversation. The one and only topic was around what would happen if I became pregnant during my treatment. [pullquote]Of course I was advised to use all the contraception possible, to not purposely become pregnant during this time obviously, that would be insane. But as we all know, even with all the contraption in the world shit happens.[/pullquote]
In this scenario the woman has two choices (in other countries) continue the pregnancy, reduce your treatment (or not, but it would be advised) or plan a termination, in order to give yourself the best chance of survival. Neither option is easy. Yet women make these choices for themselves, all around the world, every single day. And we trust they know what is best for them. Neither case in this regard deserves judgement, they are and should be, case-by-case decisions made by the women themselves and fully supported by both medical staff and loved ones.
The hypothetical foetus
So when I was diagnosed with Hodgkin’s lymphoma in 2013, I was quickly informed of what would happen if I became pregnant. They would reduce the treatment in order to give the foetus the best chance of survival. At first this seems like just good advice, a reassurance that if needs be they will do what they can to help me. I am a young woman of child-bearing age, so it’s all relevant. But this mantra was repeated again and again during my treatment, by various medical care professionals. Many a conversation about saving the life of my hypothetical foetus. To get the point across that in this scenario, in this country, I would have no choice.
It’s something I’ve looked back on often. Sometimes with amusement, but mostly with dismay. It just makes me feel very uneasy. My life is more important than a hypothetical, or real, foetus. The life of a fully grown adult is not equal to that of a zygote. Before we even bring choice into it, that’s simply the case.
As heartbreaking as that can seem in situations where a pregnancy is not viable, or comes with a hefty price. This statement excludes cases of late-term “abortions” due to fatal fetal abnormalities, as we all know that late-term “abortions” are simply not done for the craic (in any country) and any further explanation on that would frankly be stupid and I hope unnecessary. When a matured, wanted foetus is dying in its mother’s womb, it’s horrendous for the parents. It’s not something to be mocked, or mislabeled. And it certainly isn’t something Irish parents should have to deal with, alone, in a different country. A financial burden on top of saying goodbye to their child in peace.
Shit happens
Luckily I finished my treatments without any accidents. But shit does happen. It happens to Irish women each and every day. So I have to put myself in their shoes. What would I have done? Could I have been able to access medical support after coming home from England? Would I financially be able to even afford a termination? Is it possible that I would I be held by the state if I informed my doctors of my wishes? Would I even feel comfortable telling loved ones? Looking at such a broad issue, simply in my own terms, my own real experiences, just does not cut it. And it shouldn’t cut it for anyone.
To truly look at this Eighth amendment and the restrictions it poses on Irish women rationally, we must not only look at it from how our own lives have gone to date. We must ask ourselves, “what if…?”. This is only one, small scenario that I can place myself in, even though it did not happen to me. Even though (under normal circumstances) I really don’t think I would ever choose an abortion in my life time. There are so many scenarios; so many stories that are not our own.
Abortion isn’t always an easy option but many have no regrets and know it’s the right choice for them; for all sorts of reasons that are none of our business. Many also have no choice.
No one can 100%, truly say “I will never terminate a pregnancy”, even when it seems completely unthinkable in our current lives shit happens.
How the Eighth Amendment could affect Laura with Psoriasis:
I have psoriasis. I’ve had it since I was nine, I’m 30 now. It had peaks and troughs but since being an adult it has more or less stayed the same. It’s not just flaky skin that’s itchy. It’s unsightly red blotches all over. The Psoriasis is on my face, breasts and bottom. No where is safe.
It has affected my self-esteem greatly and at times my physical health when it cracks and bleeds. When I was 15 it was so bad on my arms that I couldn’t raise them further than my chest and my mother had to dress me. That was pretty humiliating.
I’ve been called several names because of it ‘scabby’ being the most popular and nothing makes me retreat to being a child who wants their mother, than an adult who stares.
I’ve had several treatments and have tried many diets and none have worked for an extended period of time. The most relief I had with these treatments was three months.
Hope for relief
So, this year I was informed I was a suitable candidate for a series of injections. These are relatively new. The injections work by changing how your immune system produces skin cells. Psoriasis is an overproduction of skin cells.
One of the main side effects is that my immune system will be lower than the average person. I will be more likely to get a cold/flu and it viruses and illnesses will be harder to shift.
The biggest warning I got was not to get pregnant. I probably wouldn’t carry full term and if I did, we both would have lasting damage. I’m a married woman and perform my ‘wifely duties’ as a certain religious organisation calls it. We use two types of protection but nothing is 100% safe.
This is why the Eighth Amendment needs to be repealed. If I were to get pregnant it could be very detrimental to my health and the foetus. I also know, from having relatives with these conditions, that I couldn’t care for a special needs baby, while ill myself. It would be a likely scenario if I were to have a baby.
Potential pregnancy
My injections are life long, so I can’t get pregnant at all. My health is more important than a foetus. I have a husband and family and friends.
If I were to get pregnant, I would be devastated, particularly as I use two methods of contraception. I would have to arrange an abortion and that would be very upsetting. [pullquote]Nobody likes having to get an abortion but I firmly believe my health and well-being are more important.[/pullquote]
I also suffer with my mental health and to be honest, I’d be afraid that pregnancy would make it worse, due to the impact it would have on my life. My physical and mental health would be put on a back burner if I were to get pregnant under the Eighth Amendment.
I know I would be pressured to put the foetus’ health and needs before my own, even before it’s born. Sometimes I struggle to care for myself, never mind a helpless baby.
People have asked me if I can come off my medication to have children. The truth is, I don’t want to. It may be selfish but I want a quality of life for myself and not having children is a side effect of that. I did initially grieve before starting treatment but now I am fine with that decision. A door has closed but a new one has opened and so far, I haven’t looked back.
[bctt tweet=”No woman has an abortion for fun. —Elizabeth Joan Smith” username=”@thezebramom”]
How the Eighth Amendment could affect me:
During my last pregnancy, I was in a wheelchair from the first trimester until my daughter was three-month old. Having EDS, there are some risks involved in pregnancy. You are at risk of pre term labour, miscarriage and of hemorrhaging, to name but a few issues. I lost my son’s twin at about seven weeks into my first pregnancy.
Almost immediately into my second pregnancy my pelvis became an issue. Symphysis Pubis Dysfunction (SPD) is a pretty common condition during pregnancy; but not early on in pregnancy. Most women complain of the pain in their groin, back, legs and hips in their last trimester and usually manage with crutches.
The foetus growing inside me was just two inches when my body turned against me. The pain was unreal. I have put up with dislocated joints-even popping them back in myself but this was something else. I could not physically walk without crying. Some days I did try not to use it in order to stay mobile and avoid muscle wastage but even then I had to use special crutches. For days after I attempted walking I would be stuck in bed screaming in pain. Before pregnancy, I was on opiates and they barely took the edge of my chronic pain.
My waters broke weeks before I was due to give birth. I went into the maternity hospital and told them I felt a pop and a trickle. So they examined me and came to the conclusion that my waters hadn’t broken. I went for an appointment in the high risk clinic a couple of weeks later and mentioned baby had been a bit quiet. So they scanned me and lo and behold, half of my waters were gone. So I was induced that night.
Traumatic birth
I was put on IV antibiotics to prevent infection. We were both pretty lucky we hadn’t picked up an infection with my waters leaking.
Several hours later I gave birth but then I started to feel very unwell. I was vomiting and passing out. I was having a massive bleed and the midwives were calling for blood. Luckily, they stopped the bleeding on time and I lost half my blood volume. It took a year and high doses of iron for me to feel “normal” again. The whole experience traumatised me.
Three months and a lot of hard work and I got myself out of the wheelchair for the most part. I still have to use it if I am out of the house for an extended period of time. My pelvis is almost always dislocated and affects my back and legs as well.
Pregnancy could leave me permanently immobile
Progesterone plays a massive role with my condition as it causes my joints to become even more lax. If I were to get pregnant again, it is very, very likely that I will not be so lucky (not so much luck as I put in a tonne of work) to get out of the wheelchair. I have been warned not to get pregnant again. The contraception I am on at the moment but it will have to come out as it is affecting my health. I can not have any “unnecessary” surgery like a tube ligation or hysterectomy. A C Section can not be performed without it being an emergency because I am susceptible to infection, stitches don’t hold well and I would suffer with chronic regional pain on top of the wide-spread chronic pain I suffer with now.
I have two children. I have a husband who is my carer. He does almost all the cooking and the cleaning while looking after our two children and a budding business. There are days where he must help me get out of the shower and even dress me.
If I were to have another baby, I would never have a “good day”. I would be in even more pain than I am in now. An American doctor who used to be an Oncologist has stated that EDS would be one of the top three most painful conditions to live with.
Abortion would be the best decision for our family
[pullquote]I can not put myself in more pain. It is not possible to put my family through more than what they already experience. I have to be a mother to the children I have now[/pullquote]. Ehlers Danlos Syndrome is an inherited condition. My children have a 50/50 chance of having this condition. Both our son and daughter have EDS. Our two-year old daughter is more affected than my son-suffering three dislocations already. I can’t subject another child to this life of pain. I will not. Accidents happen and if I were to get pregnant accidentally, I would have to have an abortion no ifs or buts.
Travelling for any amount of time leaves me bed/couch bound for days. Stress causes my symptoms to flare. If I should need to have an abortion, I should be able to go to my local hospital, have the procedure and go home that night to my own bed, to be surrounded by my family. I should be able to be open about what had just happened and not hide it in shame. I would be making the right decision for my family. The family that is living and breathing.
Up until pretty recently, I was anti choice. It was when I had to travel to the UK for treatment not available in Ireland that my mind was truly changed. I empathised with all the Irish women who had to travel. I cried at the thought of these women being alone because their partners couldn’t get the day off work or because they were raped and didn’t want to tell anyone.
The Eighth Amendment needs to go.
I’m fighting for repeal of the Eighth Amendment not just for me, but for my daughter. EDS gets worse when a girl hits puberty and most of the time, during pregnancy. If she’s already this affected now, it does not bear thinking of how the condition will manifest later on in life. She needs to have bodily autonomy. This condition takes away so many freedoms over our bodies, we do not need anything else taken away from us.
I have started a Facebook page, Disabled People for Choice in Ireland to show the world that despite what the anti-choice might think, there are those with disabilities who believe in choice, no matter the situation.
[bctt tweet=”You cannot have maternal health without reproductive health. And reproductive health includes contraception and family planning and access to legal, safe abortion. —Hillary Clinton” username=”@thezebramom”]
Some facts from the Abortion Rights Campaign in Ireland:
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 hello@thezebramom.com
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 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
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.
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
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
[pullquote]
“because of the Constitutional provisions on the right to life of the unborn [Article 40.3.3] there is significant legal uncertainty regarding a pregnant woman’s right to [consent]”.
[/pullquote]
This section of the HSE’s policy allows the HSE to apply for injunctions from the High Court. These injunctions compel pregnant women to receive treatment when they have not consented. Sometimes, what the HSE are seeking injunctions for is not seen as best practice by international standards.
In Ireland pregnant people are frequently induced early without any medical reason. They are cut without consent, medicated without consent and not properly informed of the procedures forced upon them. This issue of consent was highlighted in the 2014 Association of Improvement in Maternity Services (AIMS) Ireland survey of 2,836 women, where less than half of all respondents said they were given the opportunity to refuse consent to tests, procedures and treatments. Less.Than.Half.
Strike 4 Repeal protest Credit Siobhan Venables
My own story:
Looking back at my first birth, I was affected by the Eighth Amendment. Induction was to be scheduled just nine days after my “due date”. It was my wish to go the full fourteen days but my consultant said that was not hospital policy. I was afraid to argue because I had seen stories of women brought to the high court and even threatened with social services because they went against hospital policy. Frustratingly, the midwife who began my induction said by the way I was looking, I would have given birth on my own a couple of days later.
My second birth was quite similar. I wanted so badly to have a home birth but just seeing I had a pre existing condition made me an unsuitable candidate. The midwives knew I wanted to do this so badly. They hadn’t even heard of Ehlers Danlos Syndrome so why was it a straight up no without a consultation with the head of the Home Birth department? Now, having a hospital birth was the best option in the end but I was not given a choice from the get go.
No informed consent, no wishes respected
I specifically told the hospital I did not want an epidural. I was not to be offered an epidural. If I wanted, I would ask for it. Did that happen? Of course not.
[pullquote]The midwives wore me down, they kept insisting and being in pain and exhausted, I gave in. I had no choice in either of my labours. I was not informed that induction would be far more painful than a natural labour or that it would be far more lengthy.[/pullquote]
There was no indication that I would be going through my first birth alone because of the Swine Flu epidemic. I was given my orders and at 22, I just went along with it. I was not one to kick up a fuss (that’s changed now). After all, doctor knew best. Or so I thought.
Long-term effects
For the following six months after my first birth, I had nightmares every night about being induced and being alone for the majority of my labour. My husband was only there for the very last bit of my labour and for the birth. He was with me for the entirety of my second, which made the experience far more positive.
I was told by a midwife recently that if I had been in the UK, that even with my EDS, my choices would have been respected after I had been informed about any risks.
I spoke with other Irish people with chronic illness/disability about how the Eighth Amendment has affected them. This blog has been a long time in the making because I wanted to do justice to their very important stories. Stories that show the Eighth Amendment needs to be repealed.
*Names have been changed to protect the identity of people affected by the Eighth Amendment:
Strike 4 Repeal protest Credit Siobhan Venables
The Eighth Amendment affected Jennifer with Ehlers Danlos Syndrome:
Initially I hadn’t wanted to give birth in a hospital. My ideal birth was a water birth in the comfort of my own home. I wanted to share a bed with my partner the night our child was born. I hated the idea of him being sent home on his own after helping me through everything.
Unfortunately, I was told what I wanted wasn’t possible. I was told my BMI was two points higher than they would like. Although I never had any complications associated with high BMI that was that. The water birth was not going to happen in the hospital. The head midwife told us the HSE had padlocked an entire wing with brand new birth pools and my obstetrician admitted it was partly because disinfecting the birth pools had been deemed too expensive. I settled on an active birth, low lighting where possible, two birth partners (which I fought for), quiet voices and positive language. There was to be as little intervention as possible.
Jennifer’s Birth Story
At 41 weeks I was brought in for an induction, we had started sweeps a couple of weeks before, but I had excess amniotic fluid so our baby was essentially bobbing and couldn’t engage for long enough to get labour going by himself.
It was a Thursday I was brought in, I was given the max dose of hormone gel on my cervix between then and Saturday. I had contractions and ironically was allowed to go and have a normal bath in my early stages of labour.
The birth I didn’t want
On Saturday I was told my waters needed to be broken. My mother and partner were there with me. I was brought into a procedure room; the ones that don’t have a full bed but instead something closer to a lounge chair. The air con was on and loud enough that we had to raise our voices to be heard. I was told it couldn’t be switched off. When they broke my waters there was meconium in them. The midwives were starting to panic. We were given an hour to get my labour moving or I would be put on a drip.
I asked if I could send one of my birth partners to get my birthing ball from the car and was told they would give me one instead. So I went to the bathroom that was through the maternity triage ward. When the birthing ball finally arrived it was too short for me and under inflated. It far from ideal as I had a badly misaligned pelvis that went untreated throughout my pregnancy and never fully healed.
I was put on continual monitoring, I tried to ask if there was another way as this would prevent me from moving much and I was told we would see. This was about 1pm and it didn’t come off the monitors until after I gave birth at 5 am.
Emotional and physical scarring
It took 5 people to get an IV line into me. Two midwives and two doctors attempted and failed. Eventually an anaesthetist was successful. All of them tried multiple places. They had no issue finding veins but my skin was too stretchy and tough for them to get the plastic part of the line under my skin. Three years later I still have multiple scars from their attempts.
We were left with a midwife to get my labour going once all of that was done. She was very matter of fact with me and somewhat lacking in bedside manner. She left the room for something and I cried.
I already knew even my most basic wishes weren’t going to be taken into consideration. It was rapidly turning into the labour I was hoping to avoid.
[pullquote]
It was rapidly turning into the labour I was hoping to avoid.
[/pullquote]
My tolerance for pain is high. I’ve walked around on a subluxated hip and fractured tailbone for three weeks without pain medication. I cope quietly until I can’t. Because of that, my drip was turned up the max amount at every interval. The midwife who relieved the previous one was amazed I was already in the highest dose when she came in. I ended up having one breath between contractions. I was no longer coping well and kept saying I wanted to go home. They checked my dilation, 3cm. I knew I wouldn’t have the energy to get to 10 at this rate. Determined not to have a C-section, I gave in and asked for an epidural.
Before the epidural was administered and we were waiting for the anaesthetist I asked to go to the bathroom. I was told I wasn’t allowed because of the monitors and she would give me a catheter instead. It felt very unnecessary and it hurt.
Hurt, starved and threatened
I was cathetered three more times. The last two I wasn’t even asked, I didn’t need to go, she had to press hard on my stomach and force urine out of me.
When I did get the epidural it only worked on one side of my body, it took 4 hours to rectify. Apparently because I’m a larger lady (I’m a size 18).
Breakfast was served at 7am. My waters were broken before lunch. I was denied food for my whole labour in case they needed to do a C-section. I went about 23 hours without eating.
[pullquote]
C-section and episiotomy were threatened against Jennifer.
[/pullquote]
I didn’t end up needing either and I didn’t have any tears from giving birth. I did get two minor tears either side of my urethra, where my clitoral hood meets my inner labia.
Strike 4 Repeal Protest Credit: Siobhan Venables
Medical trauma affected my sex life
I discovered about a year later I also had a tear under my clitoral hood where it connects to the clitoris.
[pullquote]The midwife who pushed either side of my vagina as my son was crowning caused this. It affected my ability to climax for about two years.[/pullquote]
These were caused by the midwife who pushed either side of my vagina as my son was crowning. It affected my ability to climax for about two years.
“I did not give consent”
I had wanted to do delayed cord clamping but due to the meconium that wasn’t an option and I’m ok with that. It was my wish to let my placenta to come away naturally. Once my son was delivered they took him to the other side of the room to clear his lungs and check him over. Meanwhile I was given an injection to hurry up my placenta without my permission, which caused a massive bleed, they thought I was haemorrhaging initially. I understand this may have been necessary but there was no discussion, explanation or warning about the injection. I did not give consent.
Thankfully I have a happy healthy child and physically I have more or less recovered. Emotionally and mentally less so. I will not be giving birth in a hospital again unless I have complications during my pregnancy or labour that put my future children or me at risk.
How The Eighth Amendment affected Sarah with Crohn’s Disease:
I have Crohn’s disease, and I had a very rocky end to my pregnancy.
In the third trimester I developed pneumonia, and began having a massive flare. I was given great treatment in the maternity ward and went home.
At home I was spending days on the couch or running to the toilet. I had little energy and each trip to the doctor I was told that once baby arrived they would see what they could do. The main thing was plenty of rest and not losing weight, which I did a good job of- I was huge!
My previous baby was quite small, 5lb 10. I’m pretty petite myself, so I really wasn’t worried when they said this baby was small. I went for weekly scans, and every week baby was there moving away happily growing quite slowly but no signs of anything amiss.
She had an almighty strong kick so I felt pretty confident. I know these things aren’t perfect but one day the consultant called me in. She started tossing around terms like “hospital won’t accept liability” [pullquote]’hospital won’t accept liability’ [/pullquote] and when I asked if there was something wrong, she said she couldn’t guarantee this until baby was here.
Unnecessary induction
Something about the way she spoke made me feel like there was something wrong. Apart from my own illness, my vitals, baby’s heartbeats, scans and everything had been going well. I asked her when did she want to do the induction (I didn’t think I had a choice or was giving consent by the way, this sounded like a life or death matter) she said tomorrow.
Without much warning she told me to lie in the bed and said she was going to do a sweep. I was 36 weeks. The sweep was agony in my already inflamed pelvic area.
Sarah’s Birth Story
The next morning I was hooked up to the drip and ready to go. All was going well for the first while, I had strong contractions but I was up and moving about. After a while nothing still, so they turned up the drip and I had even more intense contractions.
Then my Crohn’s kicked in and I had a lot of tummy trouble, and a massive onset of fatigue. I’ll spare the details but I’m usually one to laugh about this and make toilet humour. Not this time. I began to have spasms, which I get when things are bad.
“Don’t be a Martyr”
That was making me push, except now was no time to push. The nurse decided that to spare my body, because in her words ‘baby doesn’t want to come out’ they would turn the drip up again to full.
After this I was told not to be a martyr and have an epidural. Admittedly I cried because none of this my choice.
[pullquote]Admittedly I cried because none of this my choice.[/pullquote]
I had a natural birth in the past and knew what my body was capable of. This however was my biggest nightmare to be so ill and scared and having things forced upon me.
I very narrowly escaped a forceps delivery by sheer will. The epidural helped some in the end and all the pushing was stage was over and I held my beautiful girl. She was perfect, as I knew she would be. She was content and happy and safe in there, and could have stayed a few weeks longer.
Postnatal trauma
That’s not where it ended for me though, some time after I suffered faecal incontinence. It’s been an ongoing issue since. My specialist reckons I should not have had the procedure. [pullquote]A slow birth wouldn’t have put that strain on me, or a Caesarean if they genuinely felt there was a risk.[/pullquote]
My opinion was I could have been monitored in hospital and given fluids, medicines. I think they knew there was no risk. They were just too cautious- to the point I wasn’t allowed to make informed decisions. It was all decided for me, it wasn’t my body and when it was handed back they had damaged it with unnecessary medical interventions.
Strike 4 Repeal protest Credit Siobhan Venables
No bodily autonomy
Sadly, the stories featured today are not uncommon in Ireland. I have rarely come across a birth story where a mother’s wishes were completely respected. Never has a birth experience 100 per cent positive. In 2017, pregnant people do not have bodily autonomy. People with chronic illnesses and disabilities know exactly what their body is capable of. We are stronger than most people in a number of ways. People with long-term health issues face so many obstacles on a day-to-day basis. We already have so much taken away from us because of our disabilities. When it comes to birth and labour, we feel even more helpless. The control over our own bodies is taken away. The Eighth Amendment is directly responsible. Ireland’s Eighth Amendment will continue to take away our rights until it is repealed.
Change needs to happen now
[pullquote]C-Section birth rates in Ireland are three times the recommended figure[/pullquote]. Rates of episiotomy and induction are also alarmingly high in Ireland. These facts are old news, sure, but it just goes to show how controlling the maternity system is over pregnant and birthing people’s bodies. We have a dictatorship of a Health Service and something needs to change. There needs to be a massive overhaul of our maternity system and that starts with repealing the Eighth Amendment.
Some might say I am being dramatic here but Ireland in 2017 is like living in The Handmaid’s Tale.
Pregnant people are just vessels that need to be controlled and threatened when they disobey.[pullquote] In any other area of medicine, a patient’s consent must be sought. The hospital in question would have a lawsuit on their hands if they didn’t.[/pullquote] But then again, we know Gender Bias in medicine is a very real thing.
*It’s not just women who can find themselves pregnant. Nine-year-old girls can get pregnant. Transgender men can get pregnant. This is a human rights issue and not just a “women’s issue”.
Thank You to Jennifer and Sarah for sharing their stories with me. I know it can’t have been easy to write it all out and living through the memories again. You ladies are rock stars.
If you would like to tell your story, email hello@thezebramom.com
So recently , I had the displeasure in confronting two “gentleman” in their work van who decided to it take it upon themselves in parking in one of the few accessible spaces in my town. This is a common occurrence in my town and well, all over Ireland really. Many people in my country have this sense of entitlement and have little regard for those of us who genuinely need these spaces. So, in light of my recent argument with the two blokes who decided to take up a space that I needed, I present you with some of the excuses I have been given over the years.
Please, take the accessible space if you only need it for two minutes
No, really it’s quite alright. I’ll just drive around and around until you decide to move. Honestly, it’s no problem. If I can’t find a space I’ll just take my walking stick and risk dislocating my pelvis. But I’m sure that’s not as inconvenient as it is for you to have to find a space and walk to your destination which is located 50 paces away. Heaven forbid you actually use the healthy body you’ve been blessed with for a minute or so. And no, I am not throwing daggers in your direction as we go around and around waiting for you to catch the hint. That look, is admiratiton, I swear.
Please take the accessible space to make your delivery
Go right ahead, take that space to unload your delivery. I’m sure you won’t take several minutes to carry all those crates one at time into the restaurant/shop. Jesus, if you walked three more meters where the next space is, you loose the extra 10 seconds parking in the blue spot gave you. cvv Time is money, people. Time is money.
Please take the accessible space to eat your lunch
You must be so famished, you poor thing. You couldn’t even make it outside the car park to stuff your face. What happened, were you in trapped down a well? Was there a food shortage in your village? You just sit there and eat your lunch while I struggle to get my wheelchair out of the car and try and avoid on coming cars. Your stomach comes first.
Please take the accessible space to avoid the rain
Are you related to the wicked witch of the west? Cause if so, you really should avoid the rain, I don’t blame you for not considering those with blue badges, you might melt! But just in case some pesky person with a disability takes the space before you do, let me introduce to you some very modern inventions. These items are revolutionary! The first one I call a coat (still working on the name). This amazing contraption is relatively cheap and protects you from the rain you fear so badly. Simply put your arms in the sleeves and zip up the front. Simple! Available in a variety of colours and fabrics.
The second innovative invention is even better when you pair it with the coat. Simply open the keepyoudry-o-matic (my people want to call it an umbrella but I don’t think it’s as catchy) and hold it over your head. Voila! You’re dry! Amazing, huh?
Please take the accessible space to collect your able bodied bodied friend
I mean, it makes sense, doesn’t it? You don’t want to fall out with a friend because you made them walk an extra 10 paces. That’s a deal breaker there. The secret to a long lasting friendship is laziness and a mutual disrespect for blue badge holders.
Please take the accessible space to run in and “grab a few bits”.
No, no, no please go and do a full shop. Don’t rush yourself, after all your time is more important than mine. It’s not like I have hospital appointments, doctor appointments, trips to the pharmacy or my physiotherapist to see. It’s OK I’ll just hobble across the car park and that’s OK cause clearly the teabags and biscuits you need for your guests are so much more important than my health.
Do you know anybody who does these things? Have you heard of more ridiculous excuses? Let me know in the comments!
On Thursday night I heard the news and broke down. A friend or a family member didn’t die. One of my saviours did.
Many moons ago, I was an angry teenager. I was angry at myself and at the world. As an adopted person, you ask so many questions. Why me? Why wasn’t I good enough to keep? In addition to the pain of abandonment, I always felt different. Something was never quite right. I couldn’t do things other people could. My frustrations came out as anger.
I felt alone and out of place, no matter who I was with.
At 16 I was on a path of self destruction, everyone was out to get me, or so I believed. The world was a crappy place and I was just surviving in it. I felt no one really cared and ignored the pain I was going through. Maybe they just didn’t see it. I don’t know.
I am not a creative person, I am not spectacular in anyway, I’m not talented at many things. I couldn’t throw myself into something to escape the pain.
I cut myself, I drank and I did things that were not good for me. Why wasn’t life as easy for me as it was for others, I thought to myself.
In 2000, I was just 13 years old. I was into all kinds of music. Nothing really spoke to me yet. That’s when I fell in love with rock and metal. Hybrid Theory was nothing I had ever heard. I began listening to Metallica, Smashing Pumpkins, Nirvana. I had been previously exposed to their music as a child but now, I appreciated it. Your music led me to some of those most amazing music that has ever graced the world.
But three years later when my pain was increasing (both physically and mentally), Linkin Park was the band I turned to. Hybrid Theory has been one of my all time favourite albums but it was Meteora that sang to me. In particular the songs ‘Somewhere I belong’ and ‘Numb’.
“I wanna feel what I’ve wanted all along, somewhere I belong.”
It’s as though you felt all the things I felt. For the first time in my life, someone was saying all the things I didn’t have the ability to put into words.
That song was on a loop, at full volume for months on end.
When I felt like dying, it was your music that calmed me. You were one of the reasons for pulling me out of that state. Seeing you play in the RDS while supporting Metallica was one of best days of my life. So not only did your music save me, you gave me great memories.
Now? Yeah, I still feel different, unspectacular and angry at the world but now I know that no matter what, music will always be there to pull me back as well the people who get me. I wouldn’t have known that if it was for your voice.
Even now, when my mental health is suffering, I know that even though you’re gone, you’ll still be there to sing what I’m feeling. Right now ‘Heavy’ is my go to song. I can’t help but cry when I listen to it, knowing how things ended.
So thank you Chester for giving us 17 years of your voice. Thank you for making us feel less alone. Thank you for putting into words the things I’ve always thought but couldn’t say. Thank you for creating music that speaks to millions of people who have felt the way I have felt. I have seen posts and talked to many people who were going through terrible times as teenagers. Even in the same school, none of us knew we were all going through stuff and all had the same thoughts and feelings. It just goes to show, you never know what goes on in people’s heads-even if you are in the same room.
I hope, wherever you are, you are at peace. Thank You again, for pulling me back. Your legacy will continue and I hope one day, my own children will find solace in your music when they’re feeling low, if they should feel unable to speak their minds aloud.
So a few weeks back I returned to London for some autonomic tests. While I was fairly prepared, there are a few things I would do differently. Even though I had been briefed by the investigations unit, I feel that some people who are due to have these tests would benefit from a few extra tips.
These are the tests that I had:
Autonomic Function Screening tests, plasma Catecholamine blood samples, head up tilt test (Autonomic Protocol), liquid meal test with autonomic responses, modified exercise test with autonomic responses to gravitational changes, cardiovascular autonomic responses to arm movements and a 24hr blood pressure monitoring using the autonomic protocol & analysis.
How do you prep for these tests?
Food and water
You have to refrain from any food four hours prior to testing and you can not drink anything until the lead up to the tests. So, I would recommend buying a breathe freshener spray as my mouth gets really stinky when I don’t drink water for awhile. So if that happens to you, you might want to bring some with you.
Luckily, my appointment was at 11am so I did have time to get up and eat something before we left. For 48 hours prior to testing you must refrain from eating anything with caffeine (coffee, tea, coca cola etc) bananas, chocolate, cocoa, citrus fruits & vanilla.
Clothing
You should wear loose fitting clothes for testing as the hospital informs, they suggested shorts in the documentation but London in spring is cold! I brought a few different things to wear and knew what would work for the second day of tests. What worked best was a loose t shirt (make sure the arms are loose or short too) and leggings. They only attach the vast array of wires and monitors on your upper body. The lowest they go is your hip area.
Medications
I wasn’t sure whether I should take my meds or not and it didn’t say what to do on the documentation so I refrained from taking my Midon but took my pain killers as the mornings are the worst time for me, pain wise. Luckily, I had booked a wheelchair to travel around London in so there was no chance that if I did faint, that I’d crack my head on the pavement. If you’re unsure yourself, give your investigation team a call or send an email to ask what to do in regards to your medications. It didn’t dawn on me until that morning on whether I should’ve taken my meds or not.
Punctuality
If you’re travelling abroad or far from where you live, make sure that you know which train/bus etc you need to get or what route you need to take if driving. I would advise for anyone having these tests in London, to check online whether there are any delays on the tube line you’re taking. I have a tube map app that was very useful for our trips around London. Give yourself plenty of time to travel. Be sure to get to the hospital in plenty of time so you can fill out any paperwork. Because we had the two kids with us, we did get delayed a bit so I was late for my tests but what we didn’t have time to do on the first day we did on the second.
How do these tests work?
Autonomic Function screening tests
This comprises of six tests. They are performed whilst you are lying flat, which will assess cardiovascular autonomic function.
The exercises vary in length, ranging from 15 seconds for the shortest and 3 minutes for the longest. The exercises examine blood pressure and heart changes in response to various stimuli: breathing exercises, cold, problem solving and isometric exercise. There
is a rest period between each test to ensure that your blood pressure and heart rate returns to baseline before commencing the next test. The autonomic function screening test also contains an active stand test. You will be asked to stand for a maximum of 5 minutes, whilst measuring your blood pressure and heart rate.
So, the breathing exercises were very straight forward. You are asked to breathe in deeply and then breathe out slowly for 15 seconds into a small tube. Then you’re asked to breathe quickly like you are hyperventilating.
The cold test was not pleasant at all. You’re asked to place your hand on an ice pack for 1.5 minutes. It doesn’t sound very long but trust me, it feels like forever. I won’t lie, it does hurt but as soon as that 1.5 minutes is up, you take your hand off and feel instant relief.
The problem solving test was tricky for me as I have a Dyspraxia diagnosis and people with this condition tend to perform very poorly when it comes to mathematics.
You’re asked to do fairly basic maths of adding and subtracting but when we got to the big numbers, I ran into trouble. Plus the pressure of having to perform and brain fog thrown in, the odds were stacked against me but, they’re not measuring your math skills or intelligence, they want to see how your autonomic system reacts to these particular exercises.
Finally we did the isometric exercise test and this was simply having to squeeze a ball. With my weak hands and the wrists that are susceptible to dislocation, it was difficult for me but I was assured I did just fine by the lovely woman, Kiran who looked after me so well.
Plasma Catecholamine blood samples
Blood samples were taken from my arm using a small butterfly needle. Catecholamines / Metanephrines are a group of hormones (adrenaline, noradrenaline and dopamine) which circulate in the blood and help regulate blood pressure and heart rate. The levels of catecholamines/ Metanephrines in the blood changes with posture (the levels increase from lying to standing). Blood samples were taken while I was lying, following the 10 minute rest period, and while I was on the tilt table in the standing position.
On some occasions, a spot catecholamine/ Metanephrines blood sample is taken during testing. This usually occurs if the clinical autonomic scientist observes a sudden marked increase in blood pressure and / or heart rate which correlates to certain symptoms. This test is performed to determine whether there are any sudden increases in the catecholamine levels, which could explain the symptoms.
Tilt table test
A tilt table test is a non-invasive diagnostic test to determine whether your symptoms: dizziness, light headedness or loss of consciousness; are due to changes in the blood pressure and / or heart rate. At the beginning of the test, you will be asked to lie flat on a table. Two straps are put around your body to hold you in
place. After about 10 – 15 minutes of lying flat, the table is then slowly tilted to raise your body to a head-up position – simulating a change in position from lying down to standing up. The table will then remain upright for
either a maximum of 9 or 45 minutes (maximum time depends on the test requested by the doctor), while your heart rate and blood pressure are monitored continuously. This allows doctors to evaluate your body’s cardiovascular response to the change in position.
Liquid meal test
This is a procedure that’s used to examine the effects of food on blood pressure (BP), heart rate (HR) and / or symptoms.
A liquid meal is used as the effects on BP and HR can be observed after a 45 minute period. Solid foods can take a lot longer to digest (up to 7 hours). There are two options for the liquid meal:
1) complan (original flavour) + glucose + milk
2) glucose + water
Most patients will have option 1 during the test. However, I had the glucose solution as I am lactose intolerant. It is so sweet, like sickly sweet. I would love my sweet treats but this was just gross. Both meal options are suitable for vegetarians and are gluten free.
So at during this test I was asked to lie flat on the examination couch for 10 minutes to get a baseline of my BP and HR. Then I had a tilt table test. Then I had to rest again until I was asked to drink the liquid meal. Then came by favourite bit, resting for 45 minutes. It was pure bliss, no noise, no lights, nobody crawling on me or calling for me every two minutes. It was every mother’s dream. I’m pretty sure I dosed off for awhile too.
During the 45 minute rest period, my BP and HR will be monitored continuously. During the 45 minutes however, my heart rate (HR) dropped very low. My usual HR is 80-90 BPM but mine dropped to 50 for awhile. The on call doctor was called to check my stats but no intervention was needed as my HR came up by itself. After 45 minutes, I had another tilt test to see if there have been any changes to BP and / or HR following the meal.
Modified exercise test
I was asked to lie flat on an examination couch for 10 minutes or until a baseline of
my BP and HR was established. I then stood for a about 2-3 minutes. I was then again asked to rest prior to performing the exercise. For the exercise, I cycled on a bike whilst lying flat. It was tough but I needed to cycle at a continuous set speed, with the
resistance of the bike gradually increased over a set period of time. I performed the exercise as long as I could which was just 3 minutes. My knee and hips were giving out.
Following the exercise, I had yet another period of rest before standing again for 5
minutes. I couldn’t last that long either. My BP plummeted making me feel dizzy.
Cardiovascular autonomic responses to arm movements
So I basically had to hold my arms out in front of me and then above my head for a few minutes. I think I only lasted a minute. My body has become so deconditioned that it physically hurt to hold my arms out in front of me. I could feel myself getting tachycardic during the tests.
24hr blood pressure monitoring using the autonomic protocol & analysis.
I had to wear a small portable blood pressure monitor, which is on a belt and a blood pressure cuff, which was fitted to my upper left arm. The monitor will takes your blood pressure and heart rate every 20 minutes during the day and every hour during the night.
You are advised to continue with your normal activities, which will help to show your investigations team a typical profile of your blood pressure and heart rate during a 24 hour period. The monitor can be removed for a bath or shower during this period. I was also given a diary. The diary contains a list of extra activities that my team wanted me
to perform whilst wearing the monitor (these activities including measuring your blood pressure & heart rate responses to mild exercise, food and postural changes). I couldn’t do all of these activities as we were either out of the hotel, I was tending to the children or having a bath.
During the monitoring, you can eat and drink as normal prior to your appointment. Your doctor will advise you whether you need to stop any medication prior to and during testing.
After the testing, I did feel exhausted and a bit sick. Booking my wheelchair was the smartest thing I did in preparation for my trip.
A couple of weeks later Prof Mathias spoke with me on the phone (this consult does cost extra on top of the couple of thousand pounds I paid for the tests) and I received a diagnosis of Postural Orthostatic Tachycardia Syndrome, Autonomic Mediated Syncope and my Orthostatic Intolerance/Hypotension was confirmed.
If you have any questions, you can comment below or message me on my Facebook page: The Zebra Mom
This week I spoke to Sara from zebrawrites.com. In a previous life, Sara worked as a school psychologist and now she works part-time as a behavioural therapist. Sara writes about her experiences on her blog.
Sara’s primary diagnosis is Hypermobile Ehlers-Danlos Syndrome (hEDS). You can find Sara on Facebook and Twitter.
“Hi everyone, I’m Sara – a 29 year old spoonie, bibliophile, professional napper, and aspiring disability advocate. In my previous life I worked as a school psychologist, but as I no longer have the stamina for that, I work part-time as a behavioral therapist and spend the rest of my time as a professional patient. I write about my experiences at zebrawrites.com”
Now that we know a little about Sara, let’s have a look at her Friday Feelings entry:
“Dear Diary
Fridays are hard for me because I am very tired by the end of the week, especially if I have been working. I most often spend Friday evenings at home, enjoying the company of my pets and my husband. I prefer to meet up with friends on a Saturday or Sunday during the daytime, in a quiet place. My intractable migraine make me extremely sensitive to light, noise, and smell – so I have basically given up on attending parties or visiting bars during prime hours. When I’m feeling particularly well I do enjoy playing trivia with friends at a local bar on a weeknight (when it is quieter).
At this moment I feel both hopeful and frustrated. I am still young, and there is so much that I want to do with my life.
I want to be a mother in the future, and I hope that I will have the energy to be a good one – but I know that sometimes I will fall short of my expectations for myself – in this and other endeavors because of the limitations that my illness imposes on me. I have hope that new medications that are on the horizon may be able to control my daily migraine pain, but also am tired of waiting. I worry that my body will continue deteriorate. In the meantime I’m learning to sit with the pain and be as functional as possible while enduring it. I’m doing my best to strengthen my body with physical therapy. I hope that it will be enough.
I think that people have difficulty understanding chronic illness unless they have experienced it for themselves. It is hard to understand the fluctuating nature of our pain and level disability or ability on any given day. I also think it’s difficult for people to understand a condition for which there is no cure or finite ending.
EDS is not (likely) going to kill me, but it’s also never going to go away. It is a part of who I am. When confronted with this fact, most people want to “fix” it, or come up with a solution.
They might offer unsolicited advice, or suggest you’re not taking care of yourself well enough in order to ease the discomfort our condition makes them feel. I know that they mean well, they really do. So if you are a person with a chronic illness I challenge you to educate others about your life, and what it is really like. If you are a person who knows someone with a chronic illness, I challenge you to quit trying to “fix” it for them, and ask them about their experiences and true feelings.”
Thanks to Sara for taking part in our Friday Feelings blog. Can you relate to Sara’s story? Do you get unsolicited advice? How do you deal with it? Let us know in the comments below!
Want to write your own Friday Feeling entry?
Send
A high res photo
A short paragraph about yourself
What illnesses you have
Your diary entry with the following topics in it:
It’s Friday, many people will go out tonight for a few sociable drinks with their friends. What do you do on a typical Friday night?
How are you feeling at this moment about your chronic illness?
How do you feel about the future in regards to your illness?
How do you feel about the way people view your illness?
and links to your blog and social media to evienevin87@yahoo.ie
Be sure to put “Friday Feelings” in the subject bar.
As it is Ehlers Danlos Syndrome Awareness Month, during the course of May, we will be reading the diary entries of EDS sufferers. Each person experiences their illness differently and I think it will be interesting to see these differences throughout the month.
This week I spoke to Claire from Pain Pals Blog. The mum of two previously worked in health care but medically retired nine years ago. She now works in the education system and enjoys Spoonie friendly hobbies.
Claire was diagnosed with hypermobile EDS at 42. She also suffers from migraines; dysautonomia/POTS, chronic nerve pain, gut problems, Raynauds, neurogenic
“Hi, I’m Claire. I am a married mum of 2 boys aged 21 and 18, and a girl aged 14 living on borders of South London & Surrey, UK. My career was nursing and I trained and worked in various London hospitals, and then worked as a palliative care nurse in a local hospice – a fantastic, rewarding job that I loved. I was medically retired 9 years ago when my back gave up on me. Now I am kept busy with the family (more needy as young adults than they were as toddlers).
I am a school governor at a local primary school, and I am about to become Chair of my old school’s friends’ committee. We keep old pupils in touch as well as arranging careers events for current pupils. I love meeting new people and interacting with the pupils at both schools. I love reading and belong to several book clubs, posting reviews on the blog, and when I can get there I love the cinema and streamed theatre live events.”
So now that we know a little about Claire, let’s have a read of her Friday Feelings entry.
“Dear Diary,
It’s Friday, many people will go out tonight for a few sociable drinks with their friends. On a typical Friday night I will usually be found curled up in my PJs! How much of the evening meal I help with really depends upon what sort of day I have had and how fatigued I am. These days my hubby, Duncan is based at home with me, and in theory the kids can take over the kitchen duties but, it is usually like Piccadilly Circus as they come and go, leaving us to keep pace with who is eating or not! Some weeks I will try to join in with Spoonie Speak – a chat set up on Twitter for those of us who can’t go out, but like a chat in our PJs. Like lots of spoonies Netflix, Amazon & TV play a big part in my life but, this week I am actually going out on Friday for the leaving dinner of the current Chair of the friends committee.
I really want to go but do get a bit anxious about making arrangements in case I have a bad day, can’t go and let others down. Not to mention missing out.
My physical health has really deteriorated recently and since having a spinal cord stimulator implanted for the chronic pain, my POTS symptoms have really gone mad. I feel frustrated, tired and worn down by the constant pain, fainting, dislocations, drug side effects, losing my independence, the uncertainty of how I will be from hour to hour and struggling to make plans. Something I really struggle with is the fatigue and the subsequent guilt at needing to rest. On a beautiful day I can’t stand not being to jump up and just go for a walk in the park.
Some days I feel like I am constantly saying sorry for needing help to have a shower, for fainting, for being unable to cook, for being pushed in the wheelchair, even for not being able to lift the iron.
I try not to think too hard about the future for me – on bad days I can’t think about living with the pain, particularly the chronic back and leg pain, for another week let alone another 40 years! Sounds dramatic but that is how it feels. I also know that there is very little that can be done for the extreme joint pain – I have been told I need shoulder and hip replacements, but that it isn’t possible because of the dislocations and I’m still too young.
I don’t want to “give in” to the illness any more than I have to. Sometimes this is easier said than done – and at times the future feels uncertain.
But I do tend to do what I can when I can and probably don’t pace. I want to keep as active as I can for as long as I can, but the severity of POTS symptoms this last 6 months has left me feeling really low and really ill. Hopefully the different consultants can sort me enough to get me back on an even keel – but the lack of “shared” care is frustrating; repeating the same story over and over, no one knowing what other specialities are doing!
What does worry me for the future is the kids – the younger two anyway. The 18 year old has bad and frequent migraines, with neck pain, hand and arm pain. The youngest is now subluxating and dislocating, has daily pain in joints, can’t hold a pen in a normal grip, writes slowly and has pain. All 3 are dizzy on standing and lose vision – and all three are overly anxious. Two have had counselling, one self harms, one is on anti depressants, we are well acquainted with CAMHS!
I do accept that hardly anyone will have heard of EDS and have got used to suggestions of having collagen injections but what is tougher is the lack of understanding about what chronic illness means. No, I won’t get better. It is genetic so no there is no cure, not even for the kids! I feel that I have to justify myself for being tired, cancelling plans, etc. I hate having to ask for help and would love it if friends would just remember that I can no longer drive and offer a lift without me having to ask. Some people can’t understand why I use a wheelchair when I can stand and walk – pain is invisible, as are the implants in my back, and damage to my joints, but these are what making standing up and walking a near impossibility some days. I feel that other people’s lives are so busy and that I should be fitting in with them, after all I’m at home all day.
It is frustrating when I’m told how well I look and this happens when I’ve put on some lippie and blusher.
You don’t see me at my worst because I can’t actually get out of the house then! But I would probably rather people think I’m putting best foot forward and being positive – chronic illness doesn’t stop you wanting to look good, go out, have a laugh; even if you can’t always actually do this.”
A big thank you to Claire for taking part in Friday Feelings and being so open with us. Can you relate to Claire? Do you feel guilty not being able to perform certain tasks? Let us know in the comments below!
Want to write your own Friday Feeling entry?
Send
A high res photo
A short paragraph about yourself
What illnesses you have
Your diary entry with the following topics in it:
It’s Friday, many people will go out tonight for a few sociable drinks with their friends. What do you do on a typical Friday night?
How are you feeling at this moment about your chronic illness?
How do you feel about the future in regards to your illness?
How do you feel about the way people view your illness?
and links to your blog and social media to evienevin87@yahoo.ie
Be sure to put “Friday Feelings” in the subject bar.
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.
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
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One mother's experience of life with Ehlers Danlos Syndrome
The Zebra Mom 