Saturday, March 21, 2015

Chronic Illness Problems

Today I feel shit. There are so many things I could write about, in fact I have a whole list ready to go for future posts so I hope you guys are pumped for it. 
But today, I feel so drained and in pain that it's all I seem to be able to think about. So I guess my first post is gonna be about my health...

Ehlers Danlos Syndrome, Hypermobility Type

Ehlers Danlos Syndrome is a rare genetically inherited disease that is caused by a mutation in the creation of collagen proteins; that in turn has an effect on joints, tissues, skin and just about everything in the human body actually. There are a few various types, each with unique and overlapping symptoms. I have type 3, the Hypermobility type. This condition effects people in many different ways. Just as hormones and drugs can have various effects on different bodies, as does EDS. 

For me? I'm one of the lucky ones who feels the effects of my EDS on a daily basis. The two major symptoms are pain, sometimes just my joints, sometimes my skin, muscles and whole body, and also the excrutiating headaches; the other one is fatigue, and I'm not talking about didn't get enough sleep and need to have a nap kind of tired -- I'm talking, I could have 8 hours sleep or even 10 hours sleep and still wake up feeling worse than when I went to bed. It's like I wake up even more tired in the morning instead of bright and refreshed. 

Now a lot of people have sleep problems. But the difference with mine, is that it's not just tired, I'm completely exhausted. I have no energy, my muscles are weak, and I can't even think straight. Just standing in the shower or making a coffee is a huge task (and that's just thinking about getting up to do them). I'm completely exhausted, wiped out, for no reason at all. 

Thankfully, not every day is like this.. but I do have a lot of them; and over the last three years especially, the frequency has slowly increased and the severity of my 'bad days' has as well. 

All of this started well before I had any idea that something was actually wrong with me, and discovered that it wasn't just me. 
I thought for years that I just wasn't getting enough sleep, or not being healthy enough. I needed to be more active, and drink more water etc etc. 
For years doctors had told me it was everything from depression to persistent infection.. And I wish it was just one of those many things I was told, cause they're all fixable, treatable, curable. EDS isn't. 
And while bodies are complicated and I have and have had many things 'wrong' with it, EDS is the big one. It's the one I can't manage, it's the one I can't fix, and it's the one I am finding extremely hard to live with. If not for the chronic pain and fatigue, I could easily live -- happily and like I'm not even really sick at all. But it's not just EDS itself causing me problems. 
Because of it I haven't been able to find a way to reverse my liver disease and my insulin resistance -- two other major health issues in the decline of my health. 
Both of these things need exercise and a healthy lifestyle to reverse it and get a healthy body back. But EDS is making this impossible at the moment, and so far there have been no solutions that have worked to help me battle that. 
Ignoring it doesn't help either. -- You can only try and push yourself so hard before your body caves in and won't physically allow you to push it anymore. 
(I've learnt that one the hard way)

And so I struggle on, hoping, praying, looking for a solution; but firstly, a doctor who actually knows and understands my condition and what I need. 

Until then, I'll just get through today as best I can, and just see how I am tomorrow...

For more information on EDS visit:

~ Rae


  1. This is so true. Mine is not quite as severe, but comes in the form of daily unexplainable injuries and joint lock-ups, where a joint physically locks into place so I can't move it and I lose all control and strength in the limb. This even got to the point where last year, I couldn't move my hip joint for over 6months, and couldn't walk properly. It's not fun and (unlike I used to tell myself) it's not normal. For a girl who loves sport and has aspirations for high-level competition, it can often be disheartening. All we can do is manage the best we can, day by day.


  2. It sucks. But it's so true, all we can do is manage as best we can


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