When I say back to work, I’ve only been doing two mornings per week for the last three weeks. This may not sound like much but seeing as I couldn’t even get through a morning surgery three months ago, I’m very pleased that I’m managing to do this now. I was a little apprehensive about going back as the memory of dragging myself into work, feeling awful and demoralised by the knowledge that I wasn’t able to do my best hadn’t quite faded. However, it’s a relief to know that I have recovered enough from this relapse to do a little bit of work and earn some money. It also makes a change from staying at home all the time.
When recovering from an ME relapse, it’s important to continue to pace, as I’ve discussed in previous posts. It’s also important to test yourself to see if your limits have changed. This means taking some risks, including the risk of post-exertional malaise. Anyone who has experienced this understandably wants to avoid it. It’s easy for the fear of an exacerbation of symptoms to deter us from doing things. Of course, if you already know that a certain activity tends to make you feel worse, don’t do it. However, it can be immensely satisfying to attempt something you enjoy that you haven’t felt well enough to do for a long while, and feel ok, or at least not too bad afterwards. The mistake is to increase activity too quickly; this will inevitably lead to a setback and increase the likelihood of avoidant behaviour in future.
It’s hard to achieve this balance between pacing and taking risks, as I’ve discovered. Since returning to work, I’ve veered towards my old autopilot mode of ignoring warning symptoms and failing to monitor my activity carefully. I realised yesterday that I hadn’t been keeping an eye on my heart rate. When I finally got around to checking it because I was feeling a bit strange, it was racing away again – a reminder to take frequent rests and lie down from time to time. Boring but necessary.
Two mornings per week doesn’t provide enough income to cover all costs. My mother frequently reminds me of this fact. The trouble is, it’s all that I can do at present. After my last “morning” at work, which actually finished at 3pm, I went to bed and slept for three hours. I felt so tired, I was having trouble forming sentences. So I’ve informed mum that we’ll have to manage on the breadline for a while longer.
My thriftiness drive steered me towards Pinterest, the social media site for people who like looking at lots of photos of pretty things and thinking, “Ooooh, I could make that!” Pinterest was new to me. I felt as though I’d fallen down a craftsy rabbit hole and might spend hours trapped there. I was inspired to make my daughter a slightly bigger T-shirt out of three T-shirts which she has outgrown. I’m not an accomplished seamstress but it looks ok. Don’t be fooled though, successful upcycling is not as easy as Pinterest might suggest. Just head on over to Sonja Foust’s brilliant Pintester blog – an essential for anyone duped into believing that making stuff is a doddle. If you can cope with failure, though, it is fun.
That’s it for today. I have things to do, in between not doing things. Just a reminder that May 12th is ME Awareness Day. More about this next time. In the meantime, you can find out more here and Thunderclap it here if you so wish.