Imagine this. Three weeks ago you were full of life. Doing better than ever. Yes you were still ill. You were still symptomatic but you were full of life – full of hopes, full of dreams, full of excitement and it was foreseeable that you could actually put all of those into action.
Imagine starting a temporary job that you ended up loving. The people, the places, the fact that it was out of an office, the chaotic and varied nature of it. And yes. I was symptomatic. Yes my joints were fucked. Yes I wore braces more often than not but I could do it. I could manage.
I was working over my contracted hours by choice and genuinely loving being able to do all the things.
And then life happens.
And life, as life often does hit me like a ton of bricks.
I had a little crash. Well I say little. Realistically it ended up not being that little. Presumably because it hit in the middle of a full day excursion so I had no choice but to deal. So what actually happened was that I ended up unable to move my legs for two hours which was fun. But anyway – despite feeling beyond dreadful the next day I thought I could push through and work as long as I took precautions and I did – nothing much else to say about that other than looking back I realise how stupid I was.
So fucking stupid. I’ve lived with ME for 5 years, I should have known better.
The next few days featured getting stuck in showers, chest pain, heart palpitations, difficulty breathing, shakiness, dizziness.
All the signs that would let the average person know they had to stop or at the very least slow down. But did I?
Admittedly that’s because I could adrenaline myself up to work and so I felt okay. Not well, but okay. If I really felt that bad at the time, I would have swapped shifts with someone, especially for excursions. But I didn’t. I never felt that bad at the time.
God do I wish my body didn’t have this magical running on adrenaline power. I also wish I hadn’t gone to Oxford. Everyone said I shouldn’t be going. Everyone who saw the state I was in the night before.
But what did this stubborn bitch do. She went. Because I woke up feeling better than I did the night before and my thinking clearly went no further than that.
And then shit happened. I’m gonna spare medical details because they’re too painful to talk about. But to summarise, I ended up in hospital, and felt no better – if not worse after a day to rest. My body literally gave up on me. And me knowing my body knew there was no way I was finishing the last 2 weeks of this contract. It wouldn’t have been safe for anyone and would have certainty jeopardised any chances of a quick recovery. (Recovery being defined as where I was three weeks ago.)
So I made the brave decision to leave. I’m saying brave because it was difficult and it would have been so much easier to stay. I need the income, the experience and I was happy. I also need to know I can. Which of course I can and if I can’t work full time then that’s just statistics really.
Most people with ME/CFS can’t work full time at all. Very few would be able to successfully activity lead at a summer school – and I doubt any without some degree of payback.
This doesn’t reflect on me as a person or anyone else who has had to do this. It also doesn’t mean those two weeks were wasted.
It’s just life. Yet another curveball, another setback.
Another hurdle. But what I have learnt, is that this is a hurdle I can jump. I will see the other side.