Archives1
Staff member
Thanks everyone for another year of all your support! Mad to think I've been on here for so long.
In terms of health stuff, the osteopathy is definitely helping with the fatigue. The brain fog and neuropathy aren't shifting but don't think that's surprising as it seems from research that's been done that Covid has caused permanent damage. With coping mechanisms I've been able to work around the brain fog to some extent though. The main issue is really getting to and from treatment as the route I have to take is exhausting (and any travel is really!) so will try and go to every two weeks rather than every week.
I've been building my confidence slowly but surely in terms of getting out in the new powerchair. I've come to accept that there are always going to be significant risks going out and that it's always likely I won't be able to travel due to issues at train stations but if I just stay indoors I'll go mad. Got some gear to make it safer in the evenings - some more high-viz gear, some lights, a louder horn and a high-viz rucksack to put on the back (which as it turns out is the perfect changing bag size!).
Still feeling very lonely and isolated which is still new for me as I've always been extremely gregarious and made friends easily. The Meetup site isn't too great for finding groups as often they're not held in accessible places. That being said, there's a new Star Trek one starting tomorrow that I'll hopefully be able to get to. One of the issues is that due to the train strikes, I haven't been able to go to the autism support group I'd been to before again (didn't really enjoy it all that much but it was better than just staying at home!). Hoping to sign up to a weekly class somewhere to try and get more social and gear up for going back to uni. Think I've finally sorted out a wardrobe that works for me disability wise and whilst it's pretty infantilising having to get kids' clothes for the adaptations/stain resistance etc. (because companies don't seem to realise that disabled kids will grow up!), I feel more confident when out and about being able to dress smartly and 'normally' as it were. I've found that wearing a blazer means I don't need a bum bag with everything in as I can put it all in the pockets. Whilst my smarter clothing can look a bit 'school uniformy' as a result I'm happier looking smart and knowing everything can be laundered easily in case of accidents (due to my neuropathy, it's as much food and drink spills these days as much as any leakage!). It's really improved my confidence.
Big news is that I got into the New College of the Humanities for a Master's. Need to thrash out changing uni with the Student Finance people in the new year but as it's for health/accessibility reasons, I should be okay. Financially can cover the shortfall from the term at Birkbeck. Extremely pleased and looking forward to hopefully getting back out into society properly! Hoping that staying in academia is a way to eventually get back to work as I think with my health issues and the fact that all my experience is in teaching, it's the only realistic option (which says it all really!). Just plan on focusing on the Master's though and that should be doable with enough support. Going for a taster lecture there in March. Fell in love with the place when I visited and as it's all essay based and part-time, there shouldn't be an issue with accessing the course. Plus, far better facilities and superb wheelchair access!
In addition to that, have a lot to look forward to next year, it's sort of a 'bucket list' year - going to see Harry Potter and the Cursed Child in the West End and going to the Formula 1 in July. Also have got some great conventions and a couple of concerts to look forward to. It could be worse in short!
In terms of the bladder stuff - same as ever with some slight improvements as I keep doing the Kegels. Don't see myself being out of nappies any time soon though. Every time I trial doing without any, I'm reminded of why I need them! I have though luckily found a way to massively cut down costs - the DryLife Slip Super seem as protective as the BetterDry (minus the rubbing issues I have with the BD as well!) at a fraction of the cost. Wouldn't feel confident wearing them out the house but for around the house they've been protective enough.
All the best for Christmas and New Year!
In terms of health stuff, the osteopathy is definitely helping with the fatigue. The brain fog and neuropathy aren't shifting but don't think that's surprising as it seems from research that's been done that Covid has caused permanent damage. With coping mechanisms I've been able to work around the brain fog to some extent though. The main issue is really getting to and from treatment as the route I have to take is exhausting (and any travel is really!) so will try and go to every two weeks rather than every week.
I've been building my confidence slowly but surely in terms of getting out in the new powerchair. I've come to accept that there are always going to be significant risks going out and that it's always likely I won't be able to travel due to issues at train stations but if I just stay indoors I'll go mad. Got some gear to make it safer in the evenings - some more high-viz gear, some lights, a louder horn and a high-viz rucksack to put on the back (which as it turns out is the perfect changing bag size!).
Still feeling very lonely and isolated which is still new for me as I've always been extremely gregarious and made friends easily. The Meetup site isn't too great for finding groups as often they're not held in accessible places. That being said, there's a new Star Trek one starting tomorrow that I'll hopefully be able to get to. One of the issues is that due to the train strikes, I haven't been able to go to the autism support group I'd been to before again (didn't really enjoy it all that much but it was better than just staying at home!). Hoping to sign up to a weekly class somewhere to try and get more social and gear up for going back to uni. Think I've finally sorted out a wardrobe that works for me disability wise and whilst it's pretty infantilising having to get kids' clothes for the adaptations/stain resistance etc. (because companies don't seem to realise that disabled kids will grow up!), I feel more confident when out and about being able to dress smartly and 'normally' as it were. I've found that wearing a blazer means I don't need a bum bag with everything in as I can put it all in the pockets. Whilst my smarter clothing can look a bit 'school uniformy' as a result I'm happier looking smart and knowing everything can be laundered easily in case of accidents (due to my neuropathy, it's as much food and drink spills these days as much as any leakage!). It's really improved my confidence.
Big news is that I got into the New College of the Humanities for a Master's. Need to thrash out changing uni with the Student Finance people in the new year but as it's for health/accessibility reasons, I should be okay. Financially can cover the shortfall from the term at Birkbeck. Extremely pleased and looking forward to hopefully getting back out into society properly! Hoping that staying in academia is a way to eventually get back to work as I think with my health issues and the fact that all my experience is in teaching, it's the only realistic option (which says it all really!). Just plan on focusing on the Master's though and that should be doable with enough support. Going for a taster lecture there in March. Fell in love with the place when I visited and as it's all essay based and part-time, there shouldn't be an issue with accessing the course. Plus, far better facilities and superb wheelchair access!
In addition to that, have a lot to look forward to next year, it's sort of a 'bucket list' year - going to see Harry Potter and the Cursed Child in the West End and going to the Formula 1 in July. Also have got some great conventions and a couple of concerts to look forward to. It could be worse in short!
In terms of the bladder stuff - same as ever with some slight improvements as I keep doing the Kegels. Don't see myself being out of nappies any time soon though. Every time I trial doing without any, I'm reminded of why I need them! I have though luckily found a way to massively cut down costs - the DryLife Slip Super seem as protective as the BetterDry (minus the rubbing issues I have with the BD as well!) at a fraction of the cost. Wouldn't feel confident wearing them out the house but for around the house they've been protective enough.
All the best for Christmas and New Year!
