Learning to take control

I'm currently sat in my patio in the sunshine*, getting very excited about the arrival of spring. I really don't think there is any better therapy than a good dose of vitamin D, everything seems easier to cope with when the sun is shining. 

I find winter very difficult. Historically it has been the period of time where I have (for want of a better phrase) lost it. Christmas has for years been synonymous with a flare up and the feeling of losing my mind, so it's been pretty fucking amazing that this (last) year that didn't happen. In fact I've been on a very even keel the whole of winter. 

For years people have told me that I need to take control of my life, and not allow my illness to do so. I've found this a very difficult pill to swallow. I could not understand how I was supposed to have any semblance of control of a body that had a mind of its own. I didn't know how I would feel from one day to the next. I couldn't make plans because I'd have to cancel two out of three and nobody knew what was wrong with me. I saw countless therapists and doctors (including the wonderful osteopath who originally noticed my quite extreme hyper mobility). We thought I would get better, I was just waiting to be able to start my life again. That was, until my diagnosis.

I think I am finally understanding what it is to take control of my life, warts and all. I don't think I could do this before my diagnosis. When I thought that I could get better and never have to worry about things again, my focus was on the end goal. I had the idea that if I could just work hard enough, all would be sorted and I could go back to being me, pick up where I left off.

Diagnosis has thwarted that hope that I will magically get better. At first I felt like I'd be handed a life sentence. I'd known for a while that I was probably never going to fully recover, but it's quite a different thing having that confirmed by a specialist, partcilarly when you find out that your condition is a whole lot scarier than you ever realised it could be. Over the next year or so I can now look back and appreciate that I was going through the stages of grief. I cried many (many!) tears for the life I would never lead (it still chokes me up thinking about it) and I found it very difficult to accept that my life was going to be extra tough because of something so outside if my control. 

But diagnosis also came with some benefits. I could finally educate myself and start to understand what was happening in my body.  I was able to get more help. I got a blue badge and a new car through the motability scheme. I now see an occupational therpist and have a wheelchair. Each little step helped me to feel closer and closer to being in control.

The final stage of mourning is acceptance and I think I've finally reached it. What I never realised before was that until I could truly accept my fate/condition, I would never be able to take control of things.

So what does control look like to me? It looks like my cleaner and my pilates instructor who come to me once a week. It's reaching out when I feel panicked and opening up to people in my life about what's going on. It's having a flare up (as I had in February) and not losing my shit. It's changing my diet (that's a whole other post) and it's buying myself decent clothes. It's even doing my tax return on time!

I appreciate that none of these things are very big, but to me, they are everything. 

It's funny because I'm not really any "better", in fact this most recent flare up was particularly terrifying. I couldn't leave the house for a week, my hip subluxed and I couldn't put weight on it at all and my kneecap dislocated (it's a very strange thing to see your kneecap in completely the wrong place, and even stranger to be able to manipulate it back). I was going to write a post all about the flare up but I realised that I didn't need to. What it's taught me is that I'm learning to cope with these things, it actually showed me just how far I'd come. I guess what I've learnt is that I don't need to have control of my body to have control of my life. I'm never going to know whether tomorrow I will have a dislocated kneecap, but what I can know is that my home is clean, my fridge is full and I'm doing everything I can to make my life better

If 2014 was the year I learnt acceptance, I think 2015 is the year I will learn to take control, one task at a time.

* for full disclosure I was sat in the sunshine when I first started writing this, but that was a couple of days ago now and it's late at night when I am finally publishing this post!