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

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.

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.

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.

Criminalising abortion doesn't stop abortion. The Eighth Amendment bans SAFE abortion. Click To Tweet

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.

Nobody likes having to get an abortion but I firmly believe my health and well-being are more important.

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.

No woman has an abortion for fun. —Elizabeth Joan Smith Click To Tweet

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

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

. 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.

You cannot have maternal health without reproductive health. And reproductive health includes… Click To Tweet

Some facts from the Abortion Rights Campaign in Ireland:

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

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

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

 

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

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

 

 

You know you’re a mom with a chronic illness when

Being a mom is hard. Really freakin’ hard. You have sleepless nights that go on for years. Then there are snots, wee, poo, endless requests, and endless questions. Stresses of school, work, childminding, and meal prep grind you down. I could go on and on. Now, imagine being a mom with all of these stresses and then add a chronic illness into the mix. For the most part, it makes no difference to your kids if it’s all they know. You can be the mom who spends all day resting on the couch or in bed for hours and your kids will still think you’re awesome.

You can be the mom who spends all day resting on the couch or in bed for hours and your kids will still think you’re awesome.

Well, my kids do and I would consider myself a pretty mediocre mother. But I’m often told I’m too hard on myself.

I do cut corners-daily. I’m disorganised. I put things off. I loose my shit regularly. My chronic illnesses are a mix of physical and mental ailments. EDS, POTS, Autonomic Mediated Syncope, anxiety and depression all plague me. Sometimes separately but most of the time they join to create a storm of symptoms.

While most mothers will make a home cooked meal, I depend on my air fryer to cook quick and convenient food. Once a month I do manage something home cooked and special like my Crispy Chinese Pork or my Lemon Chicken Pasta. But for the most part the kids live on chicken or fish goujons or chicken and pesto pasta. Daddy does the majority of the cooking but with a budding business and all the other household chores, he simply doesn’t have the time or the energy to be making food from scratch.

“Why don’t you do meal prep and freeze?” I hear you say. Yep, I get these notions all the time. But then fatigue plagues me or my wrist pops out of place from chopping. In a town of 5,000 people, we have approximately 12 take aways. Wouldn’t it be great if there were a meal on wheels service for those with chronic illness? Or wouldn’t it be great if the village mentality still existed where the whole community helps out those who are struggling? Wouldn’t it be great if we were provided with balanced dishes that tasted just as tasty as a burger and fries from the local chipper? There’s a business idea right there.

In my mind, I’m supermom. I come up with all these Bree Van de Camp type ideas like cooking breakfast muffins or making clothes for the children. In reality, I’m lucky to get dressed and put my make up on once a week. Most people don’t have to decide on whether to wash and dress themselves or feed their children. Most people don’t have to decide whether to cook a decent meal or to stay awake long enough to make sure the children don’t kill themselves.

I’m not a “fed is best” advocate, far from it. I truly believe what we feed our children is of the utmost importance. The science shows that what we feed our children in infancy and childhood directly affects their long-term health and eating habits as they grow into adulthood. I know we could make better choices and soon I hope to collaborate with some foodies to offer some recipes that are suitable for the whole family and that are “spoonie” friendly for parents.

So now I have had that little rant off my chest, it’s time to make things a little lighter. Here are some of the signs of being a mom with a chronic illness.

You know you're a chronic illness mom when.

You spend a good portion of your day in pyjamas

It’s probable that you own more pairs of pyjamas than actual clothes. You figure, I don’t need to go anywhere today so what’s the point in spending spoons on getting washed and dressed. But, when you do get washed, dressed and put make up on your good days, you feel more human. Sure you might be exhausted from prepping yourself for the outside world but it does wonders for your mental health.

You get takeout more than you should

Sometimes when you literally can’t move during a flare up, you can’t get up to pee, never mind having to stand at the kitchen counter and then dealing with the heat of the cooker.  But when you manage to make a delicious home cooked meal, you feel like Gordon Ramsay (minus the constant swearing…mostly).

Your kids get full meals while you live on crackers and coffee

You do your best to nourish your kids. You’d rather spend your spoons on making sure they are well fed. You get so nauseous or fatigued that the last thing you want to do is eat. So you when you are feeling peckish you’ll grab the first thing that comes out of the fridge or cupboard. It’s taken me years to figure out how to eat healthier snacks that have some form of nutrients. I do like crackers on days that I’m nauseous so I buy pre hummus for some protein. A pre-made salad or a handful of nuts are a light handy snack that will give you the boost to look after your munchkins.

You say yes to your kids even when you shouldn’t just to have some peace and quiet

Saying yes when you should to all sorts of things that you know you shouldn’t. You just want them to be quiet for five minutes. We simply don’t have the energy to argue when we are in pain or fatigued. Don’t beat yourself up when you say yes to that extra packet of crisps or chocolate.

You say “not today” frequently

We say yes to the things we shouldn’t and no to the things we should. You would love nothing more than to take the kids out or let them have a play date in your house. The guilt is real. You want to give your kids all that they desire but sometimes it’s better to save your spoons for a day you feel better.  Then you can all enjoy yourselves. There will be a day you can yes to that playdate or day trip. Rest up today for what you want to do tomorrow.

You manage to wash and dress the kids while you look like you’ve been dragged through a bush backwards

Your kids are dressed beautifully with shiny teeth and brushed hair almost every day. They could pose on the cover of a shopping catalogue. You on the other hand, you look so dishevelled that you could easily pass for someone who’s just found her way to civilisation after being lost in the woods somewhere. If I need to look presentable while still feeling comfortable I put on my sports bra (cause under wired bras are the devil) and a jersey cotton jumpsuit like this one from Boohoo. I feel super comfy but I look super chic. Plus jumpsuits are a great time saver-no need to pair up tops and bottoms. Jersey cotton is a chronic illness sufferer’s best friend.

Chronic Illness mother with glasses and messy hair
The disheveled look is so in right now Credit: Adobe Stock

TV is your best friend

You’ve probably watched everything there is to watch on Netflix. When the kids are at school and you’ve managed to one productive thing that morning, you find yourself in need of a rest. If you’re anything like me; reading a book during the day will simply not do. Two pages and I’m out like a light. TV is always there for you-no matter what. You can be transported to another place and forget, just for 30 minutes, that you’re on the couch involuntarily.

TV is always there for you-no matter what. You can be transported to another place and forget, just for 30 minutes, that you’re on the couch involuntarily. 

As soon as you’re diagnosed with a chronic illness you should automatically have a free subscription to Netflix. Netflix and chill and pills for us! Oh my!

The Internet is your social life

Going out for coffee, going for drinks with the girls is a rarity. People used to come by to have a cup of tea and a chat but they’ve stopped coming. Since you’ve been diagnosed with a chronic illness, lots of things have changed. So social media becomes your social life. You can connect with others in the exact same situation with just a couple of clicks.

Even though you may have not met these people in real life, you feel super close to them because they know exactly what it’s like for you.

We do have the tendency to get lost in social media though. I noticed this about myself recently so I signed up for a creative writing class. It’s just 2 hours, one night a week. Nothing to heavy and I find writing a good therapy. With so much life experience, I’ll have a lot of inspiration to draw from.

With chronic illness, the housework is a constant stress

You would love nothing more than to move ever piece of furniture out of the way and get cleaning the collection of food, dust and small toys. The pile of laundry is giving Everest a run for it’s money and no matter how hard you try, you just can’t keep up. Sometimes you wonder if you’ll end up on an episode of Hoarders. But, in reality, your house is probably not as bad as you think. In fact, you could probably walk into almost any family home and see the same messes. If you do feel overwhelmed, check out my blog about household products that can help you manage your household with a chronic illness.

When you do manage to get to the bottom of the laundry basket you’re not a domestic Goddess, you’re a domestic badass. Celebrate with cake and a rest. That’s an order!

Chronic illness mother holding an iron
You are a domestic bad ass Credit: Abobe Stock

When you achieve something you feel like a total rock star

You’ve woken up and it’s one of those rare days you feel semi human. You do a few loads of washing; you get dressed and even put on a bit of make up. Then you prep dinner while the kids are at school. It’s all done from scratch and smells amazing. Even organising your meds is a huge achievement for you. Whatever you managed to do today, it’s an achievement and needs to be celebrated.

Simply getting up out of bed and leaving the house for a cup of coffee with friends is something to be proud of. Those days can be few and far between so when it happens, you appreciate so much more.

Maybe you have a chronic illness but manage to live normally, that doesn’t mean you are not struggling. It is so important not to compare yourself to others. I personally don’t believe in thinking I’m sicker than anyone else. Everyone’s illness is his or her own. We all handle things differently. A lot of the time, fear of pain and fatigue and of course mental illness as a result of the physical illness can hold us back. No two stories are exactly alike.

So celebrate your achievements no matter how small they may be. Try not to dwell on all the things you couldn’t get to do today. Focus on what you did manage to do, even if it was “just” getting dressed.

Until next time,

Z.M

 

Friday Feelings with Zebra Writes

Hey there, hi there, ho there!

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.

Sara

 

Now that we know a little about Sara, let’s have a look at her Friday Feelings entry:

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“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.

Until Sunday,

Z.M

x

 

 

 

Friday Feelings with Pain Pals Blog

Hey there, hi there, ho there!

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

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

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

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

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

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

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“Dear Diary,

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

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

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

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

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

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

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

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

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

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

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

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

 Want to write your own Friday Feeling entry?

Send

A high res photo

A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

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

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

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

Until Sunday,

Z.M

x

 

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

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 itthat 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

Friday Feelings with Hospital Princess

Hey there, hi there, ho there! Apologies for the radio silence and the delay in posting this week’s Friday Feelings guest post. I’ve had a crazy few weeks which I will explain in due course.

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 Cheyenne from Hospital Princess. The 20-year-old is currently studying in college. Her goal is to become a Christian counsellor and to specialise in chronic and terminal illnesses. Cheyenne suffers from Hypermobile Ehlers Danlos Syndrome, Mast Cell Activation Disorder, Dysautonomia and Gastroparesis. You can find Cheyenne on Facebook, Twitter, Instagram, YouTube and even on Etsy!

Cheyanne

“My name is Cheyanne. I am 20 years old. South Carolina is my is currently home; however, my heart is native to sunny Florida. I am blessedto do life with my family, wonderful partner of four years, and my red-headed smushed faced cat named Weasley. I am a college student at North Greenville University. 

Chances are, I always have a book or Kindle in my hands. Vegan baking for others, despite being tube fed unable to eat, is another enjoyablepastime. Similar to most, social media, binge watching Netflix or Hulu, and technology all consume a large chunk of my leisure time. And I recently transformed my grandma-like hobbies of knitting and sewing into a mini Etsy business selling handmade items.”

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

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“Dear Diary,

It’s Friday, many people will go out tonight for a few sociable drinks with their friends. My weekend with chronic illness involves the total opposite of the drunken, wild parties usually experienced by other college twenty-somethings. Alcohol via a J tube is never a practical idea. Instead, my Friday nights are spent with family and close friends playing board games, chatting, binge watching Netflix, or even the odd spur of the moment road trip.

I feel kind of defeated in terms of my illness. Treatment is limited. Since I am already relying on last resort options like tube feedings, TPN (IV Nutrition), and a continuous infusion of IV Benadryl for Mast Cell Disease, it is as if I am perpetually trapped in the ‘what do I do now’ stage. There is hope for better days ahead though.

The future is obscure, clouded with the unknowns of chronic illness.

I have no clue what the future holds, nor will I try to pretend that I do. Any conceivable plan I have had for the future has not resulted in the outcome I ever expected. Overall, I am thankful for each day I have left to continue to pursue God’s will for my life.

Outsiders inevitably have a different perspective towards my illness. The diagnoses are tremendously misunderstood.

Because they are mostly ‘invisible’ illnesses, people neglect to consider how widespread the symptoms actually are.

Only awareness can reduce the stigma and make others recognize the seriousness of Ehlers Danlos Syndrome, Mast Cell Disease, and the remaining comorbid conditions.”

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

 Want to write your own Friday Feeling entry?

Send

A high res photo

A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

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

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

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

Until tomorrow,

Z.M

x

Friday Feelings- Living with ME

Hey there, hi there, ho there!

This week I spoke to Amy from Living with ME. Amy is a university student studying English and Linguistics. Amy suffers from Myalgic Encephalomyelitis (M.E.)/Chronic Fatigue Syndrome (CFS). You can find Amy on Twitter, Facebook, Instagram and Pinterest.

Amy

Hello! I’m Amy Saunders and I have a blog called Living with ME which is basically a lifestyle blog, focusing on chronic illness. I have ME/CFS, (chronic fatigue syndrome) and potentially an underactive thyroid as well. I am a student at university, studying English Language and Linguistics, and in my spare time (when I’m not sleeping/resting!) I love reading, singing, and writing!

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

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“Dear Diary

For the past few weeks, my Friday night has been spent being in bed by 8pm, with a hot water bottle and a big soaps catch up. Usually after a busy week, I am ready to collapse and I use my Friday nights to rest and unwind from a chaotic week, and I usually love doing that. It’s time that I get to myself to do what I want to do, whether that be watching my favourite TV show, doing some blogging, or just reading a book. Occasionally, if I’ve had a quieter week, I might go out for a few drinks with friends, or a meal, but on the whole, I’m usually in bed, and that’s just the way I like it.

I’m currently recovering from a bit of a flare up from my illness which hit me in March, along with a side of anxiety and a bit of depression, so time to myself is so special to me, and so important for my health.

I am comfortable enough with my illness to know my limits, but whenever a flare up arrives, it is bound to hit you hard, no matter how bad the flare is.

March was a bad month, and that’s never going to change, but what is important is that I persevered and I got through it. It’s now time for me to reflect and look back at it and work out if there was a trigger, something that caused it, so I can learn from it and prepare for the future.

I don’t know what’s going to happen in the future. Will I get better? Will I get worse? Or will I just stay the same?

I have all these big life decisions that I have to start making over the next year or so, and to be quite honest, I don’t have a clue what I’m going to do.

It’s hard to try and explain this to people. I’m at university, so naturally people are always asking me what I want to do once I’ve finished. My gut tells me to be honest and say ‘I don’t know’, but my head tells me to lie and say ‘Oh I want to be a teacher’. I mean, that is the truth isn’t it? I do want to be a teacher. I know it’s not realistic and it most likely won’t happen, but it is the truth, right?

I don’t expect anyone to understand what it feels like to live with a chronic illness at 21 years old, but it would be nice from them to try.

But for now, I live for the present moment. I try not to think about the future, and the big decisions that I’m going to have to face soon. I’m very grateful for the life that I have, and for the family and friends, and wonderful boyfriend that I have. That is what is important, and that is enough for me.”

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

I really hope that she will be able to achieve her dream of becoming a teacher. I can totally relate to her story. How about you? Do you relate to Amy’s diary entry? Have you any advice for her about making big decisions while dealing with a chronic illness? Let us know in the comments.

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.

Sunday’s blog will be published tomorrow as we are heading to London for treatment on Sunday.

Until then,

Z.M

x

Friday Feelings with Xo, Faith

Hey there, hi there, ho there!

This week I spoke to Danielle from Xo, Faith. Danielle is SEO Manager and Freelance writer. She suffers from Sphincter of Oddi Dysfunction, this rare disorder can cause chronic pancreatitis. You can find Danielle on Twitter, Facebook and Instagram.

Danielle

“Yesterday is history; tomorrow is a mystery, and today is a gift, that is why it is called the present,” is my favorite quote of all time.

My name is Danielle Faith, and I run a peer to peer support magazine that aims to help those struggling with chronic pain, chronic illness, substance abuse and mental illness.

Being ill has been my inspiration to build and start my website. I make a huge point to note that my illness does not define me. I am a daughter, friend, blogger, social butterfly, dog lover, hard worker, college graduate, and so much more than my illness.

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

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“Dear Diary,

While most people my age might grab drinks and dinner after work on Friday night, chances are I’m curled up under some warm blankets and heating pads that night watching the nightly news and browsing the internet. It doesn’t bother me; I enjoy what I do on Friday evening. It’s a nice way to unwind without worrying about my body or having to put myself under the microscope and go out.

“I’ve become comfortable with my illness. I know it well.”

I know when I can handle it at home, I need more medication and most importantly, I know when I need to go down to the dreaded emergency room. Currently, I’m averaging a monthly hospital visit and every three months I require a hospitalization. As bad as that sounds, it’s hard to imagine it once was a lot worse. It used to be that I was going weekly to the Emergency Room with hospitalisations every month.

As I progress, I have hopes and dreams. I want to go to school to study psychology, and I want to keep working on decreasing my hospital visits. I have a lot of supportive friends and family, and I want to find ways to give back to them to show them, that they’re important to me too.

I am fortunate that my friends and family view my illness in a positive manner. I can always rely on my family and friends to do right by me and for me that says a lot.

Today, I just want to live in the moment and not worry about the past or future.

I try hard to do this as much as possible. I’m in a ton of pain a lot of the time, but my friends, family, and dog, make it all better.”

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

I really enjoyed reading her diary entry and seeing her so positive. How about you? Do you relate to Danielle or feel inspired by her post? Let us know in the comments.

Want to write your own Friday Feeling entry?

Send

A high res photo

A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

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

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

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

Until Sunday,

Z.M

x

10 things to do with your children when you’re stuck in bed

Hi there, hi there, ho there!

It’s Mother’s Day here in Ireland. While most moms enjoy having a day to relax, those of us with chronic illnesses would love nothing more than to actually get out and about and do something fun. However, no matter how much we want to, sometimes it just isn’t possible to move from our bed, let alone leave the house.

As a Spoonie, days where I have a random burst of energy come far and few between. When I do feel good I take advantage and go on a spoon spending splurge with my children. Our favourite activities are going to the beach for a walk, going for lunch/dinner or searching for fairies in the woods. Unfortunately, those days don’t happen very often as my Ehlers Danlos Syndrome and Dysautonomia wreaks havoc on my body. There are days where I can’t move from my bed never mind actually leaving the house. My illness not only affects me, but my entire family. The children have to endure many days stuck inside because mummy is unwell. So, for those days we try and do things together from the comfort of my own bed. Here are some of the things we do together. I hope it helps another Spoonie parent who may be at a loss with their children on the days they’re stuck in bed.

10 Things to do with the kids when you're bed bound

Read books

One of my favourite things to do as a child was to read with my Father. Going to bed when I was little wasn’t the big fight it turned out to be as a got too old for bedtime stories. His voice even to this day is so soothing. His Anglo-Irish accent is so pleasant to listen to that I could quite happily listen to him read the dictionary to me. Quite often I did! If I didn’t know what I word meant I was sent to his study to fetch the dictionary. There was no Google back then! My favourite book as a child was The Magic Faraway Tree by Enid Blyton.

The_Magic_Faraway_Tree

Considering the first edition was published in 1943, I’m sure the everyday lives of those children brought back some fond memories of my father’s own childhood during the 1940s. When we finished one chapter of that, Dad used to make up stories about a mischievous little girl called Yvette (hmmm I wonder where he got the inspiration for the name) who used to get up to all sorts of mischief. When her parents found out what she did the story always ended there with her parents shouting “Yeeevette!” A few years back I dug out my copy of The Magic Faraway Tree and gave it to my son Alexander when he was about 4 with a note:

“Dear Alex,

I hope this book brings you as much joy as it has brought me.

All my love,

Mum.”

I love reading The Gruffalo with the kids too. Sometimes Alex and I turn it into a song. Alexander will beat box while I rap the story. It’s great fun! Every now and then during the summer when my pain isn’t too bad, you might hear us in the woods reciting the story aloud by heart while we stroll through the rows of beautiful green trees and bunches of bluebells and daisies. Recently we started putting on the torch and getting under the duvet to read. It gets a bit stuffy though.

Watch movies

For as long as I can remember TV and movies has been a massive part of my life. Most things I know about life I’ve learned from television! I try to limit my own kids TV limit but sometimes when you can’t do anything but lie there, TV is a Godsend. I do love the days where I snuggle up with the children and show them the movies and TV shows I grew up watching. I get such a warm feeling watching their little faces in wonder at the magic of Mary Poppins or the original Doctor Doolittle. Of course the old school Disney films like Pocahontas, The Lion King and Aladdin are a must. Movies bring me hope and joy, watching others overcome their struggles sometimes give me a boost or inspire me and that’s what I want for my own children.

Watch funny videos

Sometimes looking up fail or funny animals videos on YouTube is just the thing to cheer you up. Laughter is a great medicine and the children get such a kick out of watching them. Of course do make sure that you are supervising the children when giving them access to the Internet!

Art

Art is a great therapy for everyone, young and old. Grab some crayons/markers/pencils and   a few blank sheets of paper or a colouring book. Art is proven to be beneficial for mental health, something many chronically ill patients suffer from, unfortunately. Creating art relieves stress, it encourages creative thinking, boosts self esteem and a sense of self-accomplishment, increases brain activity and so much more! Make art work a hobby if you enjoy it, it’s a great way to forget about your illness for a while. Creating art can help you work through the feelings you have about your illness.

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Puzzles

Jigsaw puzzles are not just for rainy days; they’re great for bed days too. If you have a tray a table that you’d usually use for breakfast in bed, you can use that to make your puzzle on. A duvet is no good as one movement and the whole thing will fall apart. Soul destroying!

Play games

Board games are a great way to pass the time and are so much fun. I personally like playing Guess Who with my son because it teaches him to use his descriptive words, improve his concentration and his observational skills. Operation is another great option for fine motor skills, which many children with EDS have difficulty with. Travel sized games are perfect for playing in bed. Sometimes we forego the board games and play I Spy or Simon Says.

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Creative writing

Creative writing can be very therapeutic for people suffering from mental and physical disorders. Using your own experiences can help you gain perspective and work through emotions and obstacles in your life. Of course, it doesn’t always have to be so serious. Sometimes it can just be funny to take turns making up sentences of a story. So for example if I said, “there was once a unicorn,” My son, Alexander might continue with “who had rainbow coloured poo,” or something as equally juvenile and silly.

Put on a show

Shadow puppets, actual puppets or just themselves a lot of kids like to entertain their parents and show off a song/poem/dance they’ve learned in school. I just love when my children sing and dance for me. It reminds me of when I was a child and my cousin and I would put on shows for our parents at Christmas time. There is a really cringey video of us doing our own version of Father Ted, a comedic show about three Irish priests. Our parents laughed a lot but I’m guessing it was the combination of alcohol and their 10-year-old children saying the iconic lines “Drink, Feck, Arse!” or “That money was just resting in my account.” The two of us really loved being the centre of attention, I can see that in my own children now.

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 Have a sing song/listen to music

I have to say it but the majority of modern music pales in comparison to the music of “my day”. I grew up listening to Nirvana, Metallica, Smashing Pumpkins, ABBA (I know), The Police and Fleetwood Mac. Now I am partial to a bit of Ed Sheeran, Hozier, Rag N’ Bone Man a few other singer songwriters. But I feel that music isn’t as big on the story telling anymore. Stick on iTunes or a CD player (whatever you have) and introduce your kids to the tunes from your childhood. Take turns with your child and let them introduce you to the music they like. Again, my Dad’s influence comes in here. Driving to/from school or to a hospital appointment used to be my time to have Dad up to date with “new music”. As a teenager I was a big fan of Avril Lavigne and Dad was a fan too. We used to bond with music a lot. Sitting down on a Sunday morning listening to classical music is still a time in my life I look so fondly back on. Sometimes I put on some classical music like The Four Seasons and my son and I close our eyes and talk about what we imagine when we hear the music.

Knitting/crocheting etc

 Learning to knit/sew or crochet is a skill that will always be useful and also enjoyable. The sound of the clicking needles in a rhythm has always been comforting to me. Sadly, knitting isn’t an option for me any more since I began dislocating my wrist. Knitting was dying out for a while but it has gained popularity again when many celebs said it has helped relieve their stress. Teaching a child to sew a button is a skill that they’ll always have as they grow up. These practices are also a good way to improve motor skills.

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Pick something to learn about

My kids love learning and my son’s choice of book is more often than not, an encyclopedia or history book of some kind. His thirst for knowledge is contagious; I love to learn with him. Even as adults there is still so much about the world we have still to discover and learning about it with your children is so, so rewarding. If my son asks me about how something works and I don’t know, we will try and find a book, or if we don’t have time (or I’m ill) we will Google it. This probably stems from my childhood. Whenever I didn’t know what a word meant, my Dad used to send me to his den to get the dictionary and look it up. This led to me knowing the longest word in the English dictionary by the time I was six (it’s floccinaucinihilipilification in case you’re wondering). Interestingly, this word never came to use in my days as a journalist! YouTube has some great educational videos produced for children. Netflix also has a brilliant selection of kid friendly documentaries. Our favourite are the dinosaur themed documentaries.

 Have a conversation

Every now and then I’ll ask my son questions like “What’s your favourite book?” “What’s your favourite colour?” Anything I can think of I’ll ask him. It makes him feel important to talk about what he likes and that mom is taking a real interest. Every time I ask his answer changes, it’s the nature of children, I guess. Ask them about their friends and school or what they want to be when they grow up. You could plan a nice day out for when you’re feeling better.

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“Feeling guilty often comes part and parcel of being a Spoonie parent. But remember; you can only do your best and you won’t help anyone, including yourself if you run yourself into the ground. All our children want is to know they are loved and have some quality time with their parents.”

Until next time,

Z.M

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