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Staff member
Hope people aren't annoyed by my updates!
Been quite an eventful time (some positive, some less so).
The bad:
- Still very much a brick wall re trying to get treatment for the Chronic Fatigue. Pretty certain the FND was a misdiagnosis at this point as some muscular dysfunction is common with CFS and it's really the fatigue which is why I can't stand up for too long and can only walk a few steps. Neurophysio tried to refer me to London but they weren't interested when they found out I was from Kent. She's also said there's nothing she can do for the CFS. I did try and point out that London can't really say no as there's no service locally - it is genuinely the closest CFS service. It seems Long Covid's really caused issues for them as there never used to be any issue getting referred to London when there were no services locally (Central London is only 30 Miles away after all!). My guess is that they're just swamped with Long Covid patients. However, it means I'm basically stuck in purgatory forever!
- There is some hope though, my Dad should be able to help with the finances for getting me an initial private assessment with a CFS specialist and the charity that sorted the powerchair have a provision for funding private treatment. I think I stand a decent chance as I have a wealth of evidence and crucially, there's no NHS option.
The good:
- Thanks to my new powerchair I'm able to mobilise in London. Various social workers and healthcare people just don't get that I can't get anywhere in Medway due to a whole host of access issues and my only option is to risk getting to the station and going around in London. In London I can actually get around without needing taxis now which is amazing.
- Been doing some academic reading and if I stick to one topic and pace then I can remember stuff! (Hurrah!). The uni I was at just won't work for a whole host of reasons it seems but I went to an Open Day at the New College of the Humanities and it was superb, they've just moved to a new, modern campus and it was a complete dream access wise. Lectures during the day so no need to worry about getting home late at night and also the transport is much, much easier. It's also in a super accessible part of London - can get in the pubs, cafes and restaurants around there.
- Started counselling/therapy and it's really helped. Not so much with the symptoms but with accepting I can't do what I used to and trying to find new things that I can do.
- Have been trying to get out and socialise a bit in London. The issue is so many of the groups on Meetup meet in inaccessible locations, but I have found one or two that I think will work. Whilst at Birkbeck, I joined the UCL Harry Potter Society but couldn't go to anything. Ended up reconnecting with them over Discord and I'll try and make some of the meetings. Went to the 'Back to Hogwarts' event at King's Cross which was loads of fun and one of the society members was there and we got talking.
So, still not great but hopefully things will be up and I hope to go back to Hogwarts, or rather uni in September 2023! Feels a bit nuts to be going back to school at the ripe old age of 32 as I'll be next September (and I'll be 34 when I finish my MA) but then if I sit around waiting to go back to work I could be 50 by the time I get better (if ever!).
- I do actually have a GP! At my final neurophysio appointment I was surprised to discover that I do actually have a GP. Now, I'm not going to do anything with them as fighting for treatment just got me booted out the last place but it does help admin wise and can cause lots of headaches if you're not registered with one. I can't actually get there though (as bar the station, I can't get anywhere and even that feels like going rallying some times!) but it does mean fewer admin headaches.
Been quite an eventful time (some positive, some less so).
The bad:
- Still very much a brick wall re trying to get treatment for the Chronic Fatigue. Pretty certain the FND was a misdiagnosis at this point as some muscular dysfunction is common with CFS and it's really the fatigue which is why I can't stand up for too long and can only walk a few steps. Neurophysio tried to refer me to London but they weren't interested when they found out I was from Kent. She's also said there's nothing she can do for the CFS. I did try and point out that London can't really say no as there's no service locally - it is genuinely the closest CFS service. It seems Long Covid's really caused issues for them as there never used to be any issue getting referred to London when there were no services locally (Central London is only 30 Miles away after all!). My guess is that they're just swamped with Long Covid patients. However, it means I'm basically stuck in purgatory forever!
- There is some hope though, my Dad should be able to help with the finances for getting me an initial private assessment with a CFS specialist and the charity that sorted the powerchair have a provision for funding private treatment. I think I stand a decent chance as I have a wealth of evidence and crucially, there's no NHS option.
The good:
- Thanks to my new powerchair I'm able to mobilise in London. Various social workers and healthcare people just don't get that I can't get anywhere in Medway due to a whole host of access issues and my only option is to risk getting to the station and going around in London. In London I can actually get around without needing taxis now which is amazing.
- Been doing some academic reading and if I stick to one topic and pace then I can remember stuff! (Hurrah!). The uni I was at just won't work for a whole host of reasons it seems but I went to an Open Day at the New College of the Humanities and it was superb, they've just moved to a new, modern campus and it was a complete dream access wise. Lectures during the day so no need to worry about getting home late at night and also the transport is much, much easier. It's also in a super accessible part of London - can get in the pubs, cafes and restaurants around there.
- Started counselling/therapy and it's really helped. Not so much with the symptoms but with accepting I can't do what I used to and trying to find new things that I can do.
- Have been trying to get out and socialise a bit in London. The issue is so many of the groups on Meetup meet in inaccessible locations, but I have found one or two that I think will work. Whilst at Birkbeck, I joined the UCL Harry Potter Society but couldn't go to anything. Ended up reconnecting with them over Discord and I'll try and make some of the meetings. Went to the 'Back to Hogwarts' event at King's Cross which was loads of fun and one of the society members was there and we got talking.
So, still not great but hopefully things will be up and I hope to go back to Hogwarts, or rather uni in September 2023! Feels a bit nuts to be going back to school at the ripe old age of 32 as I'll be next September (and I'll be 34 when I finish my MA) but then if I sit around waiting to go back to work I could be 50 by the time I get better (if ever!).
- I do actually have a GP! At my final neurophysio appointment I was surprised to discover that I do actually have a GP. Now, I'm not going to do anything with them as fighting for treatment just got me booted out the last place but it does help admin wise and can cause lots of headaches if you're not registered with one. I can't actually get there though (as bar the station, I can't get anywhere and even that feels like going rallying some times!) but it does mean fewer admin headaches.
