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Hey all, thought I'd check in - hope everyone's well. The YourGutPlus supplements have really helped bowel incon/IBS wise and it's taken the edge of the brain fog, so whilst still bad enough I can't work or study I feel more like me if that makes sense. Fatigue's as bad as ever unfortunately.
I feel I've been making real progress with the kegels, more dry mornings and I'm making it to the toilet more often. The arrival of the hot weather has meant I've been drinking more (especially when I've been 'exercising' (i.e. sim racing/physio stuff - not up for proper stuff quite yet!) so I've been having more accidents but I'm trying to not get too disheartened. My Mum thinks risking side effects and the dementia risk isn't worth it so playing the long game with the kegels is the way to go as they appear to be working and I'm inclined to agree.
It's also been a bit of a period of learning not to pin all my hopes on various miracle cures or devices. The external catheter wasn't for me - it was too fiddly and too much work and I prefer the absorbent underwear option as it feels less intrusive and I am able to make it to the toilet in time now and again. I'd rather try and fail to make it to the toilet (even if that's a regular occurrence!) than give up completely. Given my progress I did try and just use some washable training pants but my issues are still too bad really. Every time I risk it protection level wise, I end up regretting it. Was hoping my last big order of thick plastic backed products would be my last but I had to do another one. Like others, I'm worried that prices and delivery costs will go up and there does appear to be stock issues.
I got my new powerchair which isn't too lightweight so the taxi issue remains. On the upside, in the right conditions I can get to the station by myself so that's something. Due to my autism I hate speaking on the phone but conquered that to use the reliable wheelchair/special needs taxi company here. I should also be getting carer's allowance so should be able to go out and watch Charlton soccer matches more easily which would be something! It's definitely an upgrade though - much more comfortable, no messing around on the doortstep attaching the drive system and better battery life.
In terms of GP/benefit stuff it's still doing my head in and causing a lot of stress but I've got my neuro-physio to write to the GP and the person from the council who did a care assessment. I think the GP thinks I'm trying it on and so refuses to give me long sick notes(which is annoying as this has been going on for two years and there's no shortage of evidence!). The neuro-physio didn't inspire much confidence but at least she should be able to refer me somewhere better.
In terms of things to look forward to, I'm going to the Harry Potter Studio Tour with my father this weekend and have got the London Film and Comic Con in July which should be great - lots of "Star Trek" actors there, including William Shatner, which is a real bucket list thing for me as "The Original Series" was my favourite era as a kid. Just praying I don't catch Covid beforehand!
So lots of stress, still annoying symptoms but equally some stuff to be positive about. Hoping that I'll eventually be able to ditch the thick plastic backed products even if it's probably some way off.
I feel I've been making real progress with the kegels, more dry mornings and I'm making it to the toilet more often. The arrival of the hot weather has meant I've been drinking more (especially when I've been 'exercising' (i.e. sim racing/physio stuff - not up for proper stuff quite yet!) so I've been having more accidents but I'm trying to not get too disheartened. My Mum thinks risking side effects and the dementia risk isn't worth it so playing the long game with the kegels is the way to go as they appear to be working and I'm inclined to agree.
It's also been a bit of a period of learning not to pin all my hopes on various miracle cures or devices. The external catheter wasn't for me - it was too fiddly and too much work and I prefer the absorbent underwear option as it feels less intrusive and I am able to make it to the toilet in time now and again. I'd rather try and fail to make it to the toilet (even if that's a regular occurrence!) than give up completely. Given my progress I did try and just use some washable training pants but my issues are still too bad really. Every time I risk it protection level wise, I end up regretting it. Was hoping my last big order of thick plastic backed products would be my last but I had to do another one. Like others, I'm worried that prices and delivery costs will go up and there does appear to be stock issues.
I got my new powerchair which isn't too lightweight so the taxi issue remains. On the upside, in the right conditions I can get to the station by myself so that's something. Due to my autism I hate speaking on the phone but conquered that to use the reliable wheelchair/special needs taxi company here. I should also be getting carer's allowance so should be able to go out and watch Charlton soccer matches more easily which would be something! It's definitely an upgrade though - much more comfortable, no messing around on the doortstep attaching the drive system and better battery life.
In terms of GP/benefit stuff it's still doing my head in and causing a lot of stress but I've got my neuro-physio to write to the GP and the person from the council who did a care assessment. I think the GP thinks I'm trying it on and so refuses to give me long sick notes(which is annoying as this has been going on for two years and there's no shortage of evidence!). The neuro-physio didn't inspire much confidence but at least she should be able to refer me somewhere better.
In terms of things to look forward to, I'm going to the Harry Potter Studio Tour with my father this weekend and have got the London Film and Comic Con in July which should be great - lots of "Star Trek" actors there, including William Shatner, which is a real bucket list thing for me as "The Original Series" was my favourite era as a kid. Just praying I don't catch Covid beforehand!
So lots of stress, still annoying symptoms but equally some stuff to be positive about. Hoping that I'll eventually be able to ditch the thick plastic backed products even if it's probably some way off.
