My life with Ehlers-Danlos Syndrome P3

Oprah Winfrey once said; ‘Where there is no struggle, there is no strength.’  I really like that saying because of the truth in it. When you deal with a debilitating illness and chronic pain, it does make you stronger, because you have to be strong in order to deal with it. Chronic pain patients often force themselves to stay strong, because our strength and perseverance is what keeps us going a lot of the time.

Because of my illness, I’ve changed a lot over the years, my life has changed a lot. Sometimes now I need crutches to walk or if it’s a long distance maybe even a wheelchair. I don’t like it, but I accept it for what it is, and I accept that these resources exist to help make my life easier. I take a lot of pills each day for various ailments, and I’ve come to accept that as a part of my life now too. I’ve come to accept that I’m different and there’s nothing I can do about it, it is the way it is. You can’t fix everything in life, that’s something I’m still trying to accept.

Support. That’s very important for someone with an illness, and sometimes, especially for those whose illnesses you can’t see, is very hard to come by. I’m lucky because I do have people around me that support me, the most important of those people being my husband.

Carl, my husband, is my rock through all of this. When I met him I was in a pretty dark place; I hadn’t been diagnosed yet and I was partying hard to just try and forget about the pain for a while, Carl helped me through it. He was there for me every step of the way and he was there for me when I was diagnosed and didn’t run away. He accepted me for who I was, illness and all, and he still asked me to marry him. I know a lot of spouses have trouble dealing with a sick partner and it breaks up a lot of marriages, and I know I’m a very lucky woman to have the kind of caring, gentle and simply amazing man I have.

I’ve also found a lot of strength in an online Facebook support group, where I’ve met all sorts of people who struggle every day, just as I do, and it’s nice to have these friends in this group, because we all understand each other. It’s a gift to be a part of such an amazing group of people.

Do I wish I was healthy? Every damn day. But I’m never going to be healthy, I realize that. And I try to take life as it comes, good days and bad. You can either let the disease rule you or you can rule the disease. You can fight as hard as you can and sure, maybe you can’t beat it in body, but you can beat it in spirit. Having a strong will to fight can go a long way, because an illness is hard emotionally as well as physically. We can’t control the physical, but we can try and keep our minds from being beaten down by our diseases. Acceptance is the first step in doing that.

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My life with Ehlers-Danlos Syndrome P2

Questions. We often ask question because we’re curious and we want answers. We ask easy questions and we ask difficult questions, and when we get out answers, we’re satisfied, but when we don’t get any answers, we keep digging until we find those answers, even if we have to dig for years. Questions that go unanswered are like a plague, they’re stuck in your mind until they’re solved. And if you’re a really curious persons, questions that go unanswered are sometimes unbearable, because we’re stuck in the moment, we can’t move on until we have our answers.

After the problems with my knees started, it wasn’t long before more problems arose, haunting me, taunting me even. My legs started to hurt completely, it didn’t stay located in my knees and walking for even half an hour hurt, and running in gym class became nearly unbearable. I started experiencing sleep problems, more and more nights were spend awake watching tv, having only a few hours of sleep if I was lucky. I started getting these debilitating migraines that often landed me in the ER. When I’d get one of those migraines, it honestly felt like I was dying, the pain was unimaginable. And I started having stomach problems; I was never a big eater, but for a while I practically ate nothing because of the pain and fullness I felt – I felt like I’d eaten too much every day when I barely ate enough to keep my weight up.

But still, no one could figure out what was wrong and why I kept having all of these problems, they couldn’t seem to connect the dots, it was like a puzzle that didn’t want to be solved. It was an endless road of unanswered questions. A lot of the doctor’s I saw barely examined me, they just brushed off my complaints and send me on my way home. Some doctors told my parents I was faking it for attention. And a few even tried to have my parents commit me to a psychiatric hospital because they believed it was all in my head, and well, that I was crazy. My parents didn’t fall for that, they knew as well as I did that something wasn’t right with my body and until we had answers we wouldn’t stop searching.

I had bad days and good days. Days when I felt like doing nothing but crying because of the pain and because I had no answers, and days where the pain was very manageable and it didn’t bother me as much.

And off course all of this didn’t make my school experience any better. I never was very popular with my classmates, and being sick all the time didn’t make that any better. I was bullied a LOT and it wore heavy on my soul. Sometimes I even wished I hadn’t been born, those were the really bad days.

Years passed and more symptoms came and went. There were a few times when I couldn’t move my arm or even my hands and fingers, everything was completely blocked and it hurt like hell, still, they found nothing visibly wrong, so as usual the doctors kept sending me home, sometimes prescribing something for the pain, simply because it seemed they wanted to get rid of me faster.

When I was 18 or 19, I don’t remember the exact year, I became really tired. For 6 months I could barely get out of bed, my throat hurt and my stomach hurt and I just couldn’t manage to stay awake for longer than an hour. And because of my history, my home physician at the time didn’t even examine me. He didn’t draw blood, he didn’t do anything. He just said I had to be more active (a lot of doctors said that). And worse than the tiredness and stomach and throat pain was the fact that all my other symptoms seemed to flare up, I’d never felt worse. Eventually I wound up in the ER with a high fever and because I was getting dehydrated because I couldn’t keep anything down. Then they said I had Mono. I stayed in the hospital for a week and I felt better with treatment and even though the tiredness stayed for a long time, I was happy that the pain was less.

Off course the Mono wasn’t the cause of my other symptoms, they still went undiagnosed.

When I was about 20, I think, I dislocated my right shoulder several times in a period of a few short weeks, until my shoulder seemed to be completely blocked and it hurt all the time. Again, they took X-rays and MRI’s and even injected color dye to find the problem, but they never found anything.

After nearly a year of constant shoulder pain accompanied by my other problems I finally went to a rheumatologist. And she said my problem lied with my connective tissue and she referred me to a geneticist. She promised I’d finally have my answers and I believed her.

I was nervous about my visit to the geneticist, but more than that I was elated – finally I would have answers and finally they’d be able to cure this pain! It turns out it wasn’t that simple. Did I get answers? Yes. The doctor told me I had Ehlers-Danlos, hypermobility syndrome. I’d never heard of that disease ever and I didn’t understand even half of the doctor’s explanation, all I wanted to know was how we could cure it. That’s when he told me there was no cure for it, there isn’t even a treatment plan for this disease. I basically got told I just had to live with it and deal with is as it progressed, and it would progress fast in the next couple of years, and would get worse.

When I was told there was nothing they could do I felt my heart shatter into a thousand little pieces. I was devastated. All these years searching for an answer, searching for help, and then to hear that, I just felt completely broken and drained. I cried for days after. I didn’t understand any of it. Why me? Why was there no cure or even a treatment for this? Why this disease? They said it was genetic but no one else in my entire family has this disease, as far as I know of, so why me? I could’ve asked the same questions a thousand times, but these were questions that would never get answered, because there simply wasn’t an answer for questions like that.

I simply had to deal with it, right? There was nothing else to be done, except search for ways to ease my pain and make my life a little easier. Which was easier said than done, here I am, almost three years later and I’m still searching for something, anything that can help with the pain, because so far I haven’t found much that helps.

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My life with Ehlers-Danlos Syndrome

So, I’ve been thinking of what to write about next and then I got some wonderful advice from a dear friend who told me to just write about me and my illness and how it’s affected me. So my next few blogs will be about this illness I’m living with. It will be a glimpse into my life.

Ehlers-Danlos is an inherited connective tissue disorder with different presentations that have been classified into several primary types. I have type 3, which is the hypermobility type. I’ll get more into this later on in the blogs.

I was always kind of a sickly child growing up. I had the flu a lot, as well as other minor illnesses that kept me from school more than a regular child. But I, nor my family, really thought anything about it; we figured I just didn’t have a great immune system, and it wasn’t that bad, the illnesses I got were almost always pretty minor things. So we didn’t go to doctors to ask if there was a problem, we just let it be, especially since our physician never told us we should check into the reason I got sick so easily, we all just accepted it.

I think I was about 10 years old when my real problems started. I used to play this sport called Handball, and I liked it well enough, but then I started getting problems with my knees. I remember the first time it happened, I was in gym class doing an exercise when suddenly my knees caved in, no warning, they just caved in and I hit the floor. And when they helped me up, it was incredibly painful to walk or to support my right knee (I remember it was the right one, because in the beginning it was always that one), I was limping and crying by the time I got to where my parents were waiting to pick me up. They were shocked to see me in such a state. So, that night we went to the doctor and he couldn’t find anything wrong and he said it was probably because of a wrong move I made with my legs. He prescribed me a pain killer for a few days, told me to take it easy and send me home. We had no reason to think he could be wrong, so we were optimistic that the pain would fade in a few days and it wouldn’t happen again.

Sure enough, a few days later my knee felt better and I was ready to be my active self again. Nothing else happened for several weeks and soon I’d forgotten all about it, until it happened again. The second time it happened it hurt even worse and my parents took me to the ER. They took some scans and stuff of my knees, but couldn’t see anything wrong at all, so they too prescribed me a pain killer and send me on my way home. Again, we had no answers.

And that was the beginning of what would become a long and difficult road, filled with doctor’s appointments, visits to the ER, even panic attacks. Even though I didn’t know it at the time, when I fell down that first time it was the beginning of a different life for me, a changed life. Things would never be the same again, I would never be the same as I was before. That one life changing moment, a moment I didn’t even realize was significant until much later, that moment has stuck with me for years, haunting me with the question of ‘why?’. Why me? Why then? Why? Why? Why? So many questions that would go unanswered for years, questions that would haunt me in my sleep.

Being ill is hard enough, but being ill without knowing why is unbearable. Having no answers to your questions is incomprehensible. And it fills you with self doubt. Am I really feeling all of this? Is it in my head, like the doctors say? I could have given up searching for answers, but I knew something was wrong. I knew it and my parents knew it, it seemed it was only the doctors that didn’t know it. So we didn’t give up, we kept fighting to find answers, and one day we would get those answers, but it was a day far far away in the future. You think getting ill is hard, you have no idea getting a diagnoses would be even harder…

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Insomnia with chronic pain

So, as you can guess by the title, this topic is all about insomnia. Something a lot of chronic pain sufferers deal with. Basically it boils down to this: If we get any sleep at all, that’s a lot!

Dealing with insomnia can be, as you might guess, tiring and very hard on the mind. As you might know, sleep deprivation is not good for anyone and can become dangerous.

Ever stayed up an entire night to study for a final or watch a marathon on TV, or for any reason really? I bet you were dead tired by the end of the next day. Now imagine that feeling and have it go on for three or four days or even longer – days without any sleep at all. It’s not uncommon for chronic pain patients to be up for days in a row, deadly tired but unable to sleep because of the pain.

It doesn’t come as a surprise then that a lot of insomniacs are coffee addicts. No, we don’t drink coffee to stay awake. We drink coffee because we’ve tried everything to sleep and it doesn’t work, and we want our minds to stay alert, so coffee it is. Basically a lot of the times we do sleep is because we kind of pass out from sheer exhaustion.

So wondering what the true definition of insomnia is? Here it is, as stated by the Mayo Clinic Staff:

Insomnia is a persistent disorder that can make it hard to fall asleep, hard to stay asleep or both, despite the opportunity for adequate sleep. With insomnia, you usually awaken feeling unrefreshed, which takes a toll on your ability to function during the day. Insomnia can sap not only your energy level and mood but also your health, work performance and quality of life.

How much sleep is enough varies from person to person. Most adults need seven to eight hours a night.

Many adults experience insomnia at some point, but some people have long-term (chronic) insomnia. Insomnia may be the primary problem, or it may be secondary due to other causes, such as a disease or medication.

So basically that’s insomnia. For me it’s a mix, on the days I can sleep I only sleep a few hours (and if I’m lucky I’m able to take a short nap during the day) and then wake up or I just don’t sleep at all. It does leave one constantly tired. And the weird thing? If on the off chance I do sleep the normal 8 hours or so, I feel even more tired than usual because I’m just not used to sleeping that much. It’s kind of a lose – lose situation.

And before you ask: why don’t we try sleeping pills? We’ve tried that, a lot of us take sleeping pills and maybe they’ll work at first (or they’ll barely work at all, or we’re resistant to them), but they won’t work for long, because the pain we feel is stronger than the sleep we need. Pain always prevails, even with the addition of sleeping pills in your system. Also, I don’t like taking sleeping pills and only use it as a last resort if I’ve been up for a few days, because they always leave me feeling drowsy for about two days after I’ve taken them. And it’s not the same kind of tired or drowsiness you feel when you’ve had little or no sleep, it’s basically a drug induced haze making it hard to think or do anything. At least with the insomnia tiredness you can do a few things to make your mind feel clearer, such as a large intake of caffeine – that doesn’t help when you’ve taken one of those pills that leave you feeling like a zombie.

Off course there are people who are under the impression we stay up all night because we want to, because we supposedly want attention afterwards – that’s a huge misconception! Chronic pain sufferers would love nothing more than to sleep for 8 hours and not feel the pain for a while, but it’s just not possible. Because, as I’ve said before, the pain keeps us up or wakes us up.

Also, the insomnia can make it hard for us to want to eat. Because really, you might be hungry if you stay awake long, but the longer I’m awake, I have less of an appetite. I think that’s because something in our bodies fractures when we are unable to sleep for a long period of time. Your stomach kind of rebels against you after a while (you might feel hungry, but you won’t be able to eat a lot), at least that’s what it does to me. If I’m lucky, I can eat one good meal a day and maybe a few little snacks in between. (Though, the recent addition of several medications seems to have improved my appetite, even going on little sleep.)

So this is basically what I wanted to say about insomnia. You might agree, you might disagree; let me know in the comment section how you feel about this topic.

Until next time,


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Daily life with an invisible illness

Dealing with an invisible illness on a daily bases is quite possibly one of the hardest things I have ever and will ever face as a person. It doesn’t matter what the exact nature of the illness is, the key word here is invisible. It’s just as the word describes; it’s unseen, a ghost if you will. It sneaks up on you, takes your body hostage and no one will know, because no one can see. And lets face it, for most people, if they can’t see physical proof that it exists, well, then it doesn’t exist. I’ve had people tell me that I look great, that I can’t possibly be sick because you can’t see anything wrong with me. What people don’t realize is that there are a lot of diseases that attack the insides of the body, not the outside. And people like me, who face these kind of struggles, we put on a mask for the world. We smile and pretend to be fine even when we’re in horrible pain. We do whatever we can to get through the day, use whatever we can to make things a little easier on us.

Just imagine when you break a leg and have to walk with crutches, then everyone will look down at your leg to see what’s wrong – it’s a natural human reaction. Now imagine your legs looking perfectly fine, but you still  have to use crutches – people will stare even harder because they can’t see anything wrong and they don’t understand why you’re walking with crutches. Their reaction to this? They think you’re an attention seeker. And it’s not just regular people who have these types of reactions, it’s doctors as well.

When a doctor can’t physically find a problem, he’ll dismiss your complaints and send you home, saying you’re just seeking attention or it’s all in your head. It can take many years for a person with an invisible illness to get diagnosed, years in which you feel nothing but fear and uncertainty; fear that the doctors are right and it is all in your head, fear that no one will ever be able to help you, uncertainty of what comes next.

I could talk for hours more about how difficult it is for a person with an invisible illness to live in today’s society, but instead I’ll direct you to the poem that I’ve written below, a poem that says a lot about people like me, I think.

Look At Me

Look at me, and for once really see.
Look at my face; shiny, bright and happy.
Look inside of me and see,
The despair and pain hidden away within me.
I look and sound good and strong,
But inside I’m struggling to hold on.
My head and body in constant conflict,
Fighting endlessly to try and beat it.
And when I come out and smile,
Know I’m still fighting for another while.
Every day is a battle you can’t see,
Every day there’s a fight inside of me.
And I smile and nod and laugh,
Because the illusion of looking great is all I have.

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