Really struggling – Day 5.
I’m used to my symptoms fluctuating from one day to the next, and also within the same day.
I’m used to my symptoms flaring up for several consecutive days after over-exerting myself. Sometimes it can last a week or two.
But knowing this, doesn’t make it any easier. I’ve had a busy run of things recently. I’ve had the best summer in years, thanks to my health improving. But the thing with ME and POTS is that everything still comes with payback.
Unsurprisingly, I started crashing last Wednesday. It’s now Sunday. I feel like I should be able to do a little bit more each day, but in reality I seem to be doing a little bit less each day. Each day seems to be resulting in longer stretches in bed, resting. Brain fog, headaches, nausea, fatigue, inability to be upright for prolonged periods – they’ve all cranked up the volume in my body.
In reality, I should pick up any day now. But also in reality – there’s the chance that one day I might not. I might continue to go downhill until I end up right back at square one, bedridden, needing a wheelchair and a stairlift, unable to speak for more than 5 minutes twice an hour. Watching the world carry on without me.
Because it DOES happen. People with ME can and do relapse. And that is my biggest fear, and the biggest fear of anyone with this illness that has been lucky enough to get some semblance of life back. The fear that we might lose it all again one day.
I do believe that this is ‘just’ another bad flare. That it will pass, if I just ride it out and get plenty of rest.
… But I’ll be honest; when I feel this unwell, there is also a part of me that worries my luck has run out.
On the plus side, I got porridge and 2 cups of tea in bed today. Score!