Hi Julie, your situation is quite similar to mine as I am also generally limited to staying in bed and unable to sit up for any length of time. I have periods of time where I’m able to do more but also times where like you are now I’m more restricted. To some extent, I trying struggle too much to fill my day, because by the time I’ve done all the “essentials” (washing/dressing/medical admin)…and there’s always so much medical stuff to sort… And factoring in rests, it seems to take a lot of the day anyway but I think that’s because I spend so much time having to stop/rest/nap. It actually gets a little harder as you get slightly better and have a bit more energy – not enough to get up and about but enough to be bored. The days seem long then! I do a lot of the same things as you – TV/books/audio books/listening to music. I spend a lot of time talking to people online – it can be hard to start this initially if you don’t know many people, but through Facebook groups etc you can get chatting especially if you join ones with people with common interests. Another thing I’ve done is find free courses online that you can work through at your own pace, similar to how you are with the Spokz programme but on different kinds of topics and you can find all different kinds of formats too so some might be written text or short videos depending what you prefer. There’s loads out there, I can recommend some websites if your interested but you can find courses on pretty much anything that interests you these days. I’ve been learning Makaton for example. You can also sometimes find community sessions online that you can join in person via zoom, so I try and find these for social contact during the day. I also try to just mix up and rotate between activities so I don’t get bored doing one thing. You can also find things like one player board games if you enjoy that kind of thing. Another idea I don’t do myself, but I’m guessing colouring in would be hard if you don’t hold a pen, but if you use a tablet there’s things like colour by number apps where your just tap to colour the pattern which you might enjoy (my aunt is obsessed with these!). And taking the opportunity when you are well enough to have a change of scenery – I know you are always working hard to build up strength because your so determined, so make the best of those moments when you are well enough and do have support to sit outside or look out of the window and enjoy the garden, I know nature is something you enjoy. Maybe you can work this in so that even if you can only manage a few minutes in the garden looking at the birds, when you get back to bed you could look up the birds you’ve seen or find out about them if that interests you, or extend the hobby indoors somehow?
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