Living with Ehlers Danlos Syndrome #EDSAwarenessMonth

Ehlers Danlos Syndrome (EDS) is not something that I write about much. I like to live life thinking about the things that I can do, rather than those that I can’t.

EDS plays a big part in the ‘can’t’ category, and so I studiously ignore it so far as possible.

But since it is Ehlers Danlos Syndrome Awareness month, I’m moving away from that for a little while to write about EDS, me, and my family.

EDS falls in to the category of ‘hidden disability’. If you happen to look my way, you wouldn’t be able to tell that I have it. If you look a little closer, you might… my bones are all a bit wonky, because EDS is caused by a difference in the way the collagen in my body is made up, meaning I’m more loose and stretchy than other people, and therefore my body isn’t held together as tightly as it should be. That means I sometimes walk a bit strangely, too.

Isn’t being bendy a good thing?’ is a question I get asked a lot. I suppose it’s difficult on the face of it, to understand why that would be a problem.

Thing is, EVERYTHING in the bodily system has collagen in it, pretty much. My brain fires differently – sometimes I tell my legs to stop moving, for example, and it takes a little while for them to respond. My circulatory system is sluggish because the valves in my veins are floppy. My skin is fragile, and bruises easily – and then it takes a long time to heal. My joints sublux (partially dislocate) on a daily basis, and completely dislocate fairly often too, because they’re not held together very well. I’ve got used to popping them back in, but that doesn’t mean that it doesn’t hurt!

Of course, if a body is experiencing trauma like that on a daily basis, then it starts to have an impact. Bits of me start to get inflamed, or seize up. Because this tends to work on a delay, it can be hard to tell that something I’m doing is causing a problem until it’s too late and the damage has been done. This can be a day or two later in some cases. I have to be careful not to overexert myself, or burn out. Difficult to do with three kids, two jobs, and the desire to have some kind of life around them too!

Another issue with being held together so loosely it that my body thinks it’s in a place where it’s not. My brain might think my foot is heading to one place when I’m walking, for example… and then it ends up somewhere completely different. This is why I frequently snap my toes, and end up walking into walls or people – I’ve learnt not to walk around barefoot now anywhere there are potential obstacles or steps…

So I am clumsy generally. Eating food is always entertaining.

Aside from the chronic pain that all these things lead to, I also experience chronic fatigue. This is not the same as being tired. It’s an overwhelming exhaustion, that doesn’t necessarily get better with sleep. In fact, sometimes, I can’t sleep at all. It causes sensory problems – I find lights too bright, or noises too loud – and with three kids running around and the TV, the radio and the computer all going at the same time I sometimes just have to walk out of the house. Or I can’t actually leave because I’m on my own with the kids, and then I become incredibly irritable and horrible to be around.

Talking about walking, I sometimes can’t do that either. But the thing about EDS is that there are ups and downs – there is no constant. So often, I get strange looks if I’m walking around with my crutch, because it seems like I don’t need it. And maybe, in that second, I don’t. But then a minute later, I might. I never know when my knees are going to collapse or a hip try to pop out, or when I’ll get a wave of weakness or pain.

Walking with Ehlers Danlos syndrome

It’s a funny thing, because I often don’t acknowledge to myself that I have a disability. I have a habit of just motoring on, not thinking about it, telling myself I can do things – and then reality hits when my body decides to give up on me. And it’s been further challenged in the last year by the fact that I developed autoimmune hypothyroidism, which took a very long time to diagnose because the doctors just kept attributing everything to EDS, even though I knew it felt like something different. Hypothyroidism also causes chronic fatigue, sluggishness and joint pain, as well as memory loss and confusion, and tends to lead to putting on weight (my joints don’t thank me for that). I actually thought I might be going a little bit mad.

I try not to let EDS affect my life, and the life of my family, but in reality, it really does. I can’t do things with the kids that I’d like to do. They’ve had to be much more independent than most of their peers from an early age. They don’t always understand why I need to sit or lie down and I don’t have the energy to interact with them. They get screamed at on occasion, sometimes when they knock me or jump on me and it really hurts, and sometimes because I’m suffering from sensory overload and my brain just wants to shut down. It makes me feel like the worst Mum ever. I know as I’m doing it that I shouldn’t be, that I should take the time to lower my voice and calmly explain, but at the same time I just can’t do that. There’s an overwhelming need to just escape. I also hate that there’s such a lack of consistency – it’s hard to explain to a five year old why some days I can pick them up and give them a cuddle, and other days I can’t. And why on certain days I can bake with them, but on other days I can’t even open a tin of beans or pick up a knife and hold it well enough to butter some toast. It affects my grown up family life too, with constant arguments with the Other Half about ‘laziness’ and not pulling my weight with the washing up. Of course that impacts on the kids too. I see their sad little faces when they say that ‘mummy is feeling poorly’, and it tears me up inside. It doesn’t help when other people are disparaging about it or treat me like a hypochondriac either. I want my kids to understand that not everyone is the same, that it’s ok to be different, and to be able to empathise.

I know I’m sometimes not easy to live with, and of course I can’t escape from myself so it does get frustrating. I try to keep as well as I can by carefully planning what I do, eating reasonably well, remembering to take my medication (that’s been a bit of a fail recently) and exercising just enough to keep my muscles strong, without overdoing it and causing further problems. People with EDS are also statistically far more likely to suffer from depression (something that I have experienced earlier in my life) and so I have to try and stay on top of my mental health too.

EDS has only become more widely recognised in recent years and it took me a long time to get a diagnosis. When I was younger, I had a whole strings of medical issues attributed to me, but no-one put them all together – the pain, the tiredness, the dislocations, the resistance to local anaesthetic which means I am now terrified of the dentist. Having a diagnosis was like a light switching on in my brain, I was literally jubilant for an entire week, despite also being told that EDS is a condition there is no cure for, nothing they can do for, that I’ll live with forever. It was just such a relief to be validated. To be able to show that I wasn’t just lazy, and making it all up. Also I’ve met some other people with EDS, and received support and information from them which has really helped with my own journey.

The medical community are still learning more about EDS, and so am I. I discover new things all the time that help me to understand it better, and learn how to live better to minimise the impact it has on our lives. But I know these things because I have it. The majority of people have never even heard of EDS, let alone understand exactly what it is. My children may have inherited EDS from me, and I feel terrible about that too. But at least I have an understanding of what it’s like, and I know how best to help them cope with it, should it turn out that they do.

And in the meantime, I take each day as it comes, live in the moment, and enjoy the times where I do have energy to take them to the park or help them make enormous cakes. Actually we all enjoy the enormous cakes.

That seems like a good point to end this.

 

You can find out more about EDS at the Ehlers Danlos Support UK website.

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