Disability,  Ehlers Danlos Syndrome

Uh-Oh, Elbow

I’m so frustrated with my body just now.

My elbow has decided to stop playing fair. I haven’t had a brace on my elbow today because my elbow has been fine up until this point. Now it’s not and I need to do something about it, the difficulty being that as well as not wearing a brace for my elbow today I’m also dressed inappropriately.

I wasn’t having problems with my elbow when I got dressed today. As it’s winter and I’m perpetually cold I’m wearing two jumpers; my cosy, flying duck, woolly jumper and then a hoodie over the top. These are both items that I would have avoided I had woken up this morning with elbow issues, as taking these clothes off and on over my head becomes a dangerous task.

Just to make this even more fun…

…Now that I need to put a brace on my elbow, I can’t do that without taking these two jumpers off – because when I try to brush the sleeves up my arm to give me enough room to put my brace on, there’s too much fabric and it’s just too bulky.

So in order to get the brace on to support my elbow, I need to take both my jumpers off; which, now that my elbow is causing me issues, is a high-risk activity.

It gets more frustrating because there are solutions to this problem.

  1. Always wear a brace, whether you’re having issues that day or not
  2. Only buy clothing that is suitable for every occasion

However, both of these things are possible but not practical.

I live in hoodies and t-shirts and jumpers and maybe two shirts. Getting rid of almost all my clothes and buying a whole new wardrobe doesn’t fill me with as much joy as you might expect. While I love shopping, and welcome the excuse to treat myself to something nice, I wear the clothes that I wear because I feel comfortable in them. And that’s not just a physical comfort, but emotionally too – which is probably difficult for most people to understand. There are certain clothes I feel comfortable in (mostly black, mostly loose fitting) and I don’t feel comfortable in (bright colours, tight fitting) and comfort is my biggest criteria. I don’t choose the clothes I buy based on fashion – not that I think anyone would take a look at what I wear and think that would be the deal, but still…

Then there’s the fact clothes that are good for my arms aren’t good for my legs and vice versa. For instance, on a day when my hip or my knee is particularly bad stepping into anything is a bad idea. The best thing of all is to slide on a maxi dress over my head. However, today would be a terrible day to be wearing a maxi dress because of the recently imposed elbow situation. That being said, this morning’s choice of two jumpers didn’t fare much better now, did it?

For the other point, wearing braces all the time is not advisable if it’s not necessary. There are arguments that it weakens your muscles and speeds up degradation because your muscles aren’t having to work in that way to support themselves – they become reliant on the support that is being provided by the brace. That’s not something that I want to happen as I’ve got enough issues without my actions making things worse!

I’m already I’m unlucky enough to be at the stage where there is very little I can do in the way of safe exercise exercises – something that would help me manage my condition, but I’ve really already gone too far. However, if not wearing braces when I can get away with not doing so is a way that I can slow things down, then that’s what I’m going to do.

When something happens like this, you start beating yourself up verbally.

Now you’re in extra pain, and you feel like you could have done something to prevent it, but it’s not all my fault.

One of the saddest things about today and this little elbow incident is that it’s just my elbow. This is just one of my joints, and in the grand scheme of things it’s a joint that causes me problems very rarely – for now at least. The reality is that any given time several of my joints will be playing up, needing bracing, special care, carefully thought movements and actions. Trying to manage all of them is really difficult and exhausting.

While I’m not a mother to human children, I always try to imagine it being like having a child in that you have to let them live their lives. If you wrap them up in cotton wool constantly then they might be protected from a certain type of harm, but in truth you are causing harm in another way by limiting their life experience. I could never take a risk again, but I’d also never leave my bed, let alone my house – I don’t want that to be my life. Life is hard, but I’m still capable of so much and I’m not ready to give up yet.

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