The last three days I’ve been overwhelmed by exhaustion, dizziness and nausea. This is not like Rheumatoid Arthritis fatigue, or certainly not in any way I’ve experienced it. This is a much more ‘sick’ feeling. Worst is the dizziness. I will feel fine and then suddenly the world spins. This doesn’t last long, a few minutes, but then I have nausea and a feeling of disequilibrium and that can go on for hours. It ranges from mild to completely debilitating, not the least because I don’t know what’s causing it, and therefore how to remedy the situation. The exhaustion after these attacks is overwhelming.
Yesterday morning I felt considerably better and decided to try and get out. Shopping trip, with wheelchair. But my power assist is failing, and trying to wheel the chair manually with left sided weakness, and a torn rotator cuff on the right meant I was physically worn out within minutes. More exhausting than any gym workout, ever.
So I had to find a café with wheelchair access. Even that, not easy. I’m very much starting to realise how much work there is to be done on accessible public spaces. And the ignorance of most people on how to handle a wheelchair user.
Tip: Don’t step straight into the path of a fast moving wheelchair and expect that it can stop instantly! Plus, it’s incredibly rude. I get the chair running forwards and the power assist actually doing what it should, and some idiot steps in front of me forcing me to stop, and then I have to start over. The effort involved in getting the wheelchair moving from a standing start again is huge, inertia and all that.
But people don’t think, and they don’t care. And they don’t teach their kids any respect and to also get out of the way! I’ve always hated the term ‘privilege’ but I am seeing it more and more, and thereby understanding its popularity by disability activists.
For me, it all comes back to our societies incredible lack of empathy.
But back to the point, I couldn’t find a place to park myself and fit my wheelchair to buy a coffee as well, so I bought some water, and just parked next to a bench. And rested. Just rested. Until the double vision cleared, the nausea decreased and the dizziness and vertigo became background noise.
And then I wheeled my way back out to the car and drove myself home. Fail? No, I tried. It was just a bigger ask than my body could manage.
Pacing is key. To get stronger, I need to do a little more every day. Just doing the same thing every day is not going to bring about improvement. I can already do what I can do. I need to push a little harder, but not too hard. It’s a delicate balance, and sometimes I overstep.
It’s the only way to improve. To reclaim function. To reduce pain long term, despite short term increase in pain.
I made it home, but the rest of the day was spent on the couch, body like lead, sometimes molten with pain. Frustrating. But if I stay still, the world doesn’t spin, and I hate the spinning sensation, the nausea, the exhaustion. The pressure in my head and thinking through the sludge is tiring. So I need to rest. Recover.
And tomorrow, I’ll try again. I’ll aim a little lower, and take a little longer, but I will get there.
