Thursday, 16 October 2014

We're gonna need a bigger boat

It's a strange one. 

I have just realised something. 

I am seriously unwell! 

Why did it take so long for this realisation to hit me? I have been acutely ill for nearly three years now, and yet I have only just grasped it fully. Maybe because I've been too scared. Maybe because I've been too busy surviving. Or maybe because I've been stuck in full-blown, head-in-the-sand denial. 

In fact, I think it is because I am programmed to adapt and deal with all that life throws at me. In the beginning my friends and doctors marvelled at how 'matter-of-fact' I was about it all... (except the ones who were subject to my occasional massive, teary, snottery outbursts of despair). But you can get stuck in this mode and fail to see the gravity of the situation. I am very shortly going to be retiring from working life at the age of 32. I am struggling to maintain normal life on any level. EVERYTHING is hard. It's like wading through a bog with a terrible hangover (but still a bit drunk) whilst having the flu after running a marathon wearing a diving bell. With jetlag. 

In the beginning it's all about adapting, adjusting, problem solving, sorting things out. Information gathering. The useful stuff. But what about when that stage is finished and you've settled into your new life?

I thought I had this sussed. Turns out we're gonna need a bigger boat.

Friday, 10 October 2014

Make it count

I have been unwell now every single day for nearly three years.

Every. Single. Day. 

(^^ dramatic pause ^^)

 I am way beyond waiting to get better. People often try to reassure me that one day I will "get my life back". I know what they mean- they mean get back to all the things I used to do. But what they fail to realise is that THIS IS MY LIFE. I'm not waiting for another life or my old life, I am right here, actually living my life right now. My one and only life. And I won't spend it waiting, or wanting, or wishing. 

The data on recovery from M.E makes for depressing reading and my prognosis is not great, but I do believe that even if I don't recover fully, I will recover to a much better level of functioning than I am at now. There are days, weeks and months that are blurred and hazy or lost to sleep- and I may look back on these M.E years and remember what a nightmare they were. But I think I will also look back and marvel at all I DID manage to do and all the weird and wonderful things that I have learned about myself. 

I decided long ago that I would make these years count for something. I refuse to put my life on hold, waiting and wishing for things to be different. So I have adapted and changed. Life is different (and mostly horizontal), but it is still a life. It has hardship, pain and challenges but also joy, laughter, love and beauty. 

I won't lie- It's a tough shift, I'd love to be better, but I'm living each day the best I can. 

Can you say the same?