Tag Archives: chronic illness

Me, the Zebra

Burchell's zebra (Equus quagga burchellii) smiling, Tanzania
Burchell’s zebra (Equus quagga burchellii) smiling, Tanzania

I was asked to start a blog by a few fellow zebras to share my experiences of being a mom with a chronic illness. Well, here I am. Before I get into all that though, it is important that you know my backstory, how I got to this point. I’m sure many of you can relate to my story, my journey to diagnosis.

In 2012, I was interning at the Cork Independent newspaper. During my time there I happened to take a liking to writing the health section of the paper. My parents were both nurses and my sister, also worked in healthcare so while I didn’t strictly follow the family tradition, I still had a keen interest in health. That year I decided I was going to enter the European Health Journalism Awards. The theme I chose was rare diseases. So, I contacted the Genetic and Rare Diseases Organisation (GRDO) and asked to be put in touch with a rare disease sufferer. Later that week I interviewed a woman about her disease, Ehlers Danlos Syndrome (EDS). Little did I know that the answers I has been searching for about my own illness had landed right on my lap.

There is an old saying within the medical profession: ‘When you hear hoofbeats, think of horses, not zebras’. Dr Woodward, an American professor at the University of Maryland would instruct his medical interns to practice as the phrase suggests. You see, horses are common in Maryland, while zebras would have been relatively rare during the 1940s. So, one would assume that, upon hearing the sound of trotting hooves, that a horse would be the most likely explanation. I however, am a zebra.

My symptoms started as a child but got really bad by the time I was 14. Gradually, my knees began to hurt, especially when it was cold. By 16, it was unbearable. A few years later, the pain spread to my hips and ankles. The joints began to make popping and clicking noises. Frustratingly, blood tests for arthritis and x-rays all came up clear. Then I began to have problems with my stomach and experiencing fatigue. In college, I was vomiting almost everyday for a year and napped frequently. The fatigue hasn’t stopped to this day. A colonoscopy and endoscopy came up clear but my GP said it was irritable bowel syndrome. Some days, my abdomen swells so much, that I look pregnant. After my son was born five years ago, I had no choice but to fight the fatigue. I am not anemic, but as the months have turned into years, the tiredness has become overwhelming. The smallest of chores around the house are exhausting for me. Some days, I don’t even have the energy to get dressed and face the world. People commented on this and called me lazy. Without a diagnosis, I couldn’t give them a credible answer as to why I was sitting in my pajamas in the middle of the afternoon.

I was living in constant pain for years, feeling exhausted every single day and life on a day to day basis was unbearable. I felt as though I was going crazy. All tests, scans and x-rays were coming back negative and my doctors came to the conclusion that I was depressed, that my physical pain was a manifestation of something that was purely emotional.

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Yes, pain and sleep disturbances can be symptoms of depression. Of course by that point, I became depressed. These doctors were the experts and who was I to argue? I was put on nearly every single anti depressant available on the Irish market at one point or another. Still, the pain and fatigue continued, so after eight years taking these pills, day after day, I was numb, floating through life. I felt useless as a mother, wife and friend.

Of course, I did have my good days, especially during the summer when the weather was warm and my joints didn’t hurt as much. For the past two years, the joint pain has spread to affect my hands and wrists, my back and neck too. If I move a certain way, a joint may slide out and back in again. But things changed for me in 2012 when I interviewed that girl. For the purpose of anonymity, we will call her Anna.

Anna has a condition called Ehlers Danlos Syndrome (EDS). EDS is a Connective Tissue Disorder. People with the condition produce faulty collagen, which is the glue that holds the body together. In EDS, this ‘glue’ is more like chewing gum and causes the joints to be loose, often resulting in dislocations. However, collagen is present throughout all areas of the body and therefore EDS is a multi-systemic condition with secondary conditions present in most cases. When Anna explained her symptoms, I wondered did I have something similar? I was so touched by her story and felt connected to this young woman that we kept in touch. In the meantime I was put on a public waiting list to see a rheumatologist. But then, in late 2013, I was speaking on the phone and then everything started to go black; I felt hot, my heart was racing, I felt weak. I ran to the bathroom to lie down on the cool floor. This gave me such a fright that I decided I wasn’t prepared to wait two years to see a public consultant. I had to know what was wrong with me. I was going to get answers.

I organised a private appointment with a physiotherapist who confirmed that I was hypermobile. The pieces of the puzzle were coming together. Then I arranged an appointment with a rheumatologist in Cork, with an interest in EDS and Hypermobility Syndrome. Two weeks later, the doctor confirmed that I had Ehlers Danlos Syndrome. I cried with relief that finally I could put a name to what I had. After a decade of tests and scans I had taken the reins myself and finally got my diagnosis with just two appointments. The majority of doctors in Ireland are unfamiliar with EDS and there are no specialists available here in Ireland. If there were more awareness and training, I may have been diagnosed much earlier in my life.

After my diagnosis, I began weaning off the anti depressants. That was two and a half years ago and I haven’t looked back since.

I was on a high the day I got my diagnosis, but the next I had to face the harsh reality that I have a rare, lifelong and progressive disease. Luckily, my EDS is quite mild compared to some of my friends and hopefully more awareness will mean better treatment for me, and my fellow zebras in years to come. The biggest help for me through all of this has been Facebook and speaking to other people with EDS. They are enormously supportive and there is a real air of solidarity. Everybody is supportive and no matter how trivial I thought my problems were in comparison, the support has been immense. Hopefully, together, we can raise awareness about this debilitating disease and bring about an improvement in the services available especially for our children.

My son AJ is six years old. In 2014 he was diagnosed with Hypermobility EDS. I had him seen by the Rheumatologist that diagnosed me. AJ bruises very easily and I worried that teachers might question whether he was being abused. Sadly, this is not an uncommon fear amongst the EDS community. Children have been known to be removed from the family home as their parents are suspected of abuse. Thankfully, his school has been extremely supportive, even helping us organise an SNA for him. AJs’ EDS is extremely mild at the moment. But, he struggles in school, especially with concentration and writing. This is common with EDS kids. He has sensory issues, which makes it extra hard for him. His pelvis is also unstable so sitting for long periods is impossible for him. A care plan has been put in place for him in school next year. Alex is a happy child though and has never had a severe injury, as of yet, for this, I am thankful.

In 2015, I was diagnosed with Orthostatic Intolerance and Vasovagal Syncope. I still have a long list of referrals to attend to investigate the array of health issues. There is a question mark over MS, Chiari Malformation, Gastroparesis, to name but a few.

The latest addition to our family is our little Olliepop, our 9 month old daughter. Obviously, she hasn’t received any diagnosis yet. But, deep down, I know she has EDS. Her sclera are extremely blue, a sign of EDS. The Public Health Nurse also noticed how flexible Ollie is, so much so, that she has been referred to physiotherapy. She suffered her first dislocation at just 7 months old. I fear for my little girl and what may happen to her. But, having a parent with the same condition will work to her advantage. She will be believed. She will not go decades wondering what the matter is.

Until next time,

Z.M

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A letter to my children

 

To my little darlings,

I am here watching you both sleep. It’s 5.06am and I’m awake because I’m in pain. It’s peaceful here with only the sound of you breathing, the cat purring at your feet and the tapping of my fragile fingers on the keyboard.  As I watch over you both, I think of all the things I wish and hope for you and your futures.

I wish that medical professionals will believe you when you tell them there is something wrong. I wish that when you tell your teachers you’re not feeling well, that you will be believed. I wish that when you tell me and your Daddy that you need help, that we can do that and to the best of our ability.

I hope that as you grow up, that we can do everything in our power to prevent you from experiencing the type of pain and anguish that I go through almost every day. I hope that I can be a good enough mom for you both. Most of all, I hope that you won’t grow up to hate me because I was too sick to play or get up out of bed. I hope that you will understand that I didn’t get up out of bed because I was saving my energy to do something fun with you another day.

I pray that you will grow up and live a normal life. I pray you will get the best education, in life and in academia. I pray you will find a job you love but never feel like it is work. I pray you find love, with man or woman and they will accept you with all your flaws and imperfections. I pray that you appreciate them, as I have appreciated your father for loving me, despite the difficult days. I pray they treat you the way your father has so graciously treated me.

slleping zeebra

 

I know that should you experience any of the obstacles that I have faced, you will be far more equipped to deal with them than I ever was. I know you will be strong and determined as you have been in everything you do so far. I know that you will have days where life is just too damn hard, that there seems to be no end to the uphill battle but you will continue on. I know that when you should decide to become parents yourselves that you will know this guilt that I feel now, knowing that it was you who passed on these faulty genes. But, please remember; this is not your fault. You cannot control your genes as I could not control mine.

You begin to stir next to me now. No doubt you are looking for what you affectionately call “mama” as you nuzzle at my chest. And you, my love, at the end of the bed sighing in your sleep as if your dreams are giving you relief.

I want you to know that I love you, deeply and unconditionally. I hope that you know that I’m trying everyday to be the best mom I can and I pray that you will live a healthy, happy life.

All my love,

Mum.

 

 

 

5 must haves for an EDS pregnancy

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This blog post is sort of the reason I started this project in the first place. I was approached by a few EDSers who are thinking of starting a family or expanding their brood. They asked me to share my experience with them. There is some research out there about EDS and pregnancy but not a whole pile.

Firstly, before you begin trying to conceive, talk to your doctor.

Contrary to what many people believe, EDSers suffering from the hypermobility can experience very normal pregnancies. There are cases of course where labour may spontaneously start before the estimated birth date. It is the vascular type of EDS that causes the real concern amongst doctors. In my case, I developed symphysis pubis dysfunction (spd) very early on in my pregnancy which up until 12 weeks ago, put me in a wheelchair and caused me to use my smart crutches. SPD is fairly common in pregnancies in the general population but because of laxity in the joints already, EDS may produce a severe case.

Anyway, my pregnancy was quite difficult purely because of the pain. The baby and myself were generally in good health up until the day I was induced, but I’ll explain that another time.

So here are the main things that got me through my pregnancy and what I would also suggest to anyone planning on starting a family

1.Get as fit and healthy as possible

We had been trying to conceive for about 6 months when I fell pregnant. During that time I was actively loosing weight. I had put on lots of weight in the previous 8 years, and to take some pressure off my joints, I decided enough was enough. I lost almost 2 stone and I really think that made a huge difference to my fertility. I had also been getting more active, making the effort not to throw myself into bed at the first sign of pain and fatigue. Research also shows that the fitter you are in pregnancy, the easier your labour will be, should you have a straightforward vaginal birth.

2.Support, support and support.

The first and last trimester is tough for a lot of women, never mind anyone with additional issues such as gastroparesis or dysautonomia. It is vital you have a good support system in place, especially if this is a subsequent pregnancy and you have other children to care for. Luckily, my husband is at home full time so I could rest when I needed to. I know not everyone can afford a situation like ours.
If you have family or friends who are willing to help out by cooking, cleaning or looking after other children, take their help. Grab any offers with both hands and don’t be afraid to ask for help!

Make sure you have support from your health care professionals too. Both your GP and obstetrician should be made aware of your conditions and any meds you might be on. You should also talk to your GP about Physiotherapy and Occupational Therapy to help you cope during pregnancy if you don’t already have therapists in place.

It’s funny, some women with EDS greatly improve during pregnancy while others’ symptoms get worse. Pregnancy can increase laxity and therefore the incidence of injury may increase. Investing in some supports or mobility aids can make day to day life a little easier. It can often mean the difference between getting out of the house or looking at the same four walls for days on end. My smart crutches and wheelchair were a Godsend. I also had a belt to support my pelvis, it made the area feel more stable.

3. Relaxation and rest

Pregnancy is hard on the body, fatigue has been one of the biggest complaints I’ve heard from other women with EDS. The tiniest chore may mean spending the rest of the day in bed. While it is important to stay active as much as possible, it is also important, particularly for EDSers to get plenty of rest. Listen to your body! Cleaning the kitchen cupboards might sound like a great idea to a nesting mom but will it be worth spending the next few days in bed? Save your spoons for your doctors appointment or lunch with your friends.

Your friends might want to throw you a baby shower but if you’re having a particularly bad episode of fatigue or a pain flare up, being the centre of attention may not be your thing. Suggest a chill out girly day at home, binging on Netflix and sweets or a spa day. My Dad’s girlfriend took me to a spa during my pregnancy. It was my first time having a massage (I’m 28) so you can imagine how much I looked forward to it. Although it was very relaxing, it did require spoons. I slept a lot the next day.

4. Creature comforts

Pyjamas, Netflix subscription, a good book. There will be bed days, it’s inevitable, so be prepared. I have the Netflix app on my tablet and my phone so entertainment was always at hand. Of course no bed day is complete without a pair of super comfy pyjamas. I don’t know if it is an EDS thing, but all my clothes, including my PJs always feel tight come the end of the day. No-I have not put on 3 lbs during the day, it just happens. So when I was pregnant I always bought jammies a size too big – for maximum comfort. Don’t buy anything fleecy! If your in bed all day, you’ll just end up feeling hot and bothered – and not in the good way!

5.Have faith

As I write this piece I am nursing my little girl. Every time I look at her, I think how she was worth every second of pain, every hip pop, every day stuck in bed, the scary situation were in just before and after birth was worth having her in my life. During the pregnancy, there were days I panicked and thought, this is a mistake, why did I do this? But having Ollie pop here with us has made life so much better! I feel better too, I’m out and about so much more now. I’ve kicked my physio up a notch – her birth gave me an extra push to work hard to make myself as well as possible.

I wish you health and happiness.

Z.M

You just can’t be sick

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Having any disability is difficult but for those who suffer from invisible conditions, it is a constant uphill battle. In addition to fighting their own conditions, they must also face discrimination and feel like they have to prove they are in fact, genuinely disabled.

As the name suggests, invisible disabilities are quite hard to detect, just by looking at someone. You can not tell if someone suffers from migraines, depression or diabetes just by looking at them. While you may have the best intentions, some of the following statements should never be said to someone with a chronic or invisible illness

“But you don’t look sick/But you look so well.”

While you may be trying to make the sufferer feel better, it can often come across as being accusing. Bear in mind that people with invisible illnesses probably hear this on a day-to-day basis. Not all illnesses are obvious and quite often the sufferer just puts on a brave face or you may have caught them on a good day.

“It could be worse, you could have cancer.”

Of course things could be worse, but if the sufferer has a chronic illness that doesn’t have a cure, they will be facing this condition for the rest of their lives and for some, it doesn’t get much worse than that. As for the cancer reference, just don’t..cancer goes one way or another, the person you are talking to may never be cured or won’t die as a result of a condition. Chronic illness means a life time of suffering.

“You should try this, it worked really well for my aunt, uncle, grandfather etc”

Oh this one really grinds my gears…
Again, you may mean well but unless you are a medical professional, or you also suffer from the condition, keep it to yourself. Anybody who suffers from a chronic or invisible condition wants to get better and have probably tried all treatments available to them. The Paleo diet isn’t going to fix faulty genes, or cure depression. And no, vaccines did not give me EDS!!!!

“It must be great not having to work”

My response is usually “😑”

Most people with chronic disabilities would do anything to live a normal life! Everyone wants to be independent and to have a good income to support their families. Being stuck at home all day can also effect a person’s mental state.

“You just need to exercise more”

Of course everyone should be doing some form of regular exercise. Physiotherapy and other exercises are hugely beneficial and important to maintain ones health but, going for a run or taking up a dance class can often make sufferers feel worse, especially if they have something like Autonomic Dysfunction.

“You are too young to be sick”

NEWSFLASH…
You don’t have to be elderly to be sick! You can become ill or stressed no matter what your age. Illness or disability isn’t age-dependent. Saying this to someone with an invisible condition can often make them feel self conscious about their inability to do normal, everyday tasks such as getting out of the house to get the groceries.

“It is all in your head”

Of all the things people with invisible conditions hear, this is undoubtedly the most dangerous. Sadly, not only is it heard from friends and family, sufferers can often hear it from their doctor. It is not uncommon for people suffering from physical disabilities to suffer from mental illness, and all because they were not believed.

But what can be the worst thing of all for someone with an invisible disability is for them to hear nothing at all. Someone who comes across as being totally disinterested, ignores the subject or just nods can be the most hurtful of all.

Things you should say to someone with an invisible or chronic condition.

“I believe you”

This can often be the nicest possible thing someone with an invisible condition will hear. Too often, sufferers will spend years battling with health care professionals to find an answer. When they finally hear “I believe you,” a huge weight will lift from their shoulders.

“I looked up your condition online”

Someone who takes the time to learn about a condition is very much appreciated amongst those with disabilities.

“How can I help?”

Taking a person shopping, for a cup of coffee or bringing them to their appointments can make all the difference. Sometimes someone with a chronic condition doesn’t leave the house for a long time, or misses a lot of school or work.

Adding to the difficultly of their illness is the feeling of being forgotten or left behind. Even if you can’t take time out of your day, a text or a phone call letting them know you are thinking of them may be a small act for you, but a big gesture for the recipient.

“I’m here”

Two very powerful words but, don’t say it unless you mean it.

I hope people who hear these things on a daily basis won’t feel so alone. Sadly, we will face ignorance in our lives. We will come across some moron who harasses you because you have a disability badge on your car. It’s inevitable. Chin up. We may be ‘invisible’ but we still have our voices to educate and create awareness.

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To all the people out there who are skeptical of one’s illness, remember this; never judge a book by its cover. As cheesy as it sounds, it’s true.

So until next time,

Take care of you

Z.M

x

Breastfeeding for the Chronically Ill-What you need to know

Breastfeeding has become such a touchy subject for the last few years and when ever it is discussed it inevitably becomes the breast vs bottle debate. Isn’t anybody else tired of this?! I blame the media (yes, I’m a journalist) because they have instigated ‘mommy wars’ in an attempt to generate more likes and followers on social media. I’m not here to debate ‘whether public breastfeeding is acceptable’ or ‘how long is too long?’ If you must know, I believe in breastfeeding to natural term which by the way, is anything up to 7 years of age. Will I feed a 7 year old myself? Probably not. Will I judge a mother who does? No. Her child, her business.

Anyway, this week I am offering some words of advice to chronically ill moms who wish to breastfeed or are thinking about breastfeeding. This is just touching on some points, if you want me to go into detail about anything, feel free to email me hello@thezebramom.com

1. Health benefits for mom

You’re chronically ill. God forbid you end up with any other ailments other than the crappy lifelong illness you are living with. Breastfeeding reduces a mother’s risk of developing certain cancers, diabetes as well bone conditions such as osteoporosis.

2. Health benefits for baby

“Exclusive breastfeeding for six months has many benefits for the infant and mother. Chief among these is protection against gastrointestinal infections which is observed not only in developing but also industrialized countries. Early initiation of breastfeeding, within one hour of birth, protects the newborn from acquiring infections and reduces newborn mortality. The risk of mortality due to diarrhoea and other infections can increase in infants who are either partially breastfed or not breastfed at all” (WHO)

If your condition is genetic, like mine, you may wonder whether it is worth breastfeeding at all. Absolutely, it is. Again, breastfeeding reduces your child’s chances of developing a massive range of illness and chronic conditions such as diabetes. Breastmilk is the perfect food for your baby. Anything else compromises their gut flora and may lead to problems such as coeliac disease and other food allergies.

3. Breastfeeding is the easier, less exhausting option

The first six weeks are tough and you feel like you are just feeding all day long. This is totally normal and necessary. For the first six weeks your baby is trying to establish your milk supply. Best thing to do is just sit back, relax and enjoy the time with baby. Think about how exhausting it would be if you had to prepare formula, sterilise, wash bottles etc. And the night feeds, Jeez! Having to get up in the middle of the night to make a bottle and wait for it to cool down, that is exhausting. I formula fed Bendy Boy and honestly, I was like a zombie.

After the six week mark your supply will settle and you will have a couple of hours between feeds to go about your day. Cosleeping is also really great for sick breastfeeding moms who need the extra sleep (if you are on medications that make you sleepy you will not be able to cosleep) Baby is close by that you can just pop boob in his/her mouth and you can drift back to sleep. Studies show breastfeeding and cosleeping moms get more sleep.

 

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4. It’s free and always ready to go.

If your condition has caused you to give up work, you might not have the funds to buy formula every week. You’re talking on average a tub of formula is €12. That’s €624 a year! Never mind the cost of bottles, sterilisers and electricity costs.

5. You can breastfeed on medications

I am a massive fan or Dr Jack Newman. He has been a Godsend for me when it comes to getting information on medications. Many misinformed health care professionals will tell you that you can’t breastfeed while on medications. This is not true at all. I am taking Tramadol and and Midodrene for pain and low BP. If you’re not sure about your own medications, check out the Lactmed app for android and iPhone, contact the Breastfeeding and Medications Facebook page or check out Wendy Jones’ factsheets on her website.

Paediatrician Dr Jack Newman, IBLC says:

“There is almost no drug that requires a mother to interrupt breastfeeding. The real question is which is safer for the baby: Breastfeeding with tiny amounts of drug in the milk (and it is almost always tiny) or formula? Clearly, in the majority of cases it is safer for the baby to breastfeed.”

Breastfeeding doesn’t have to be all or nothing. Every drop counts. If you can’t breastfeed yourself, the World Health Organisation recommends:

Milk from a wet-nurse, or
Milk from a milk bank, or
Breastmilk substitute (formula) fed by cup.

I expressed for my daughter for the first six weeks as she was severely tongue tied. I also used donor milk on a couple of occasions.

6. If you’re having trouble, go to a lactation expert

You go to see a cardiology consultant for your heart, a rheumatology consultant for your bones and joints so why would you not see a lactation consultant for breastfeeding? Breastfeeding is a learned skill and all mothers need help in the early days. Sadly, there is a huge lack of knowledge amongst health professionals when it comes to breastfeeding. Most health care professionals have little to no formal training in lactation (even a lot of midwives provide inaccurate information) so you will need to get in touch with an IBCLC or Le Leche League. Breastfeeding should not hurt and despite what some doctors (and the Fed is Best Foundation) might say just 1-2% of women will not produce enough milk. There are even some who say that some babies “just don’t the like milk” or that their baby is allergic to breastmilk (this is extremely rare and it’s far more likely your baby has a cow protein intolerance). Even if your supply is low, there are many things an IBCLC will help you to do to get your supply up such as a supplementary feeding system. If you are find breastfeeding difficult, do contact an expert as soon as possible to avoid further problems. There are so many myths out there so it’s important to talk to someone with extensive training.

If you have any questions, please feel free to comment below. I will do my best to help.

Until the next time,

Z.M