Broken body.

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So bit of an update from me.

Feeling significantly better than how I was (although that's not saying much really!).

No massive accidents in the morning or during the day even if the after dribble is a constant pain. Not sure if the improvement is due to a) the after effects of my second vaccine dose wearing off b) the osteopathy/physio or c) the B12 injection I had.

Managed to walk without my crutch today as well.

However, my right side is still really bad, the brain fog is still intense as ever and I still feel far more fatigued than I should. Not going to get ahead of myself or over optimistic but this is the first good day in a long, long while! Whilst I'm not better enough to return to work, if the progress keeps up I'm hopeful I'll be able to properly attack my Master's degree when it starts in October.

 

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Hi @Sci_Fi_Fan, it's good to hear you're feeling quite a bit better and that you're seeing improvements. Recovering is a process, that's for sure, and it has to be taken day-by-day.
Here's hoping you will soon see many more good days ahead and that you'll be able to work on your Master's degree in October!! We'll keep those good thoughts coming!!

 

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Alas the improvement to my condition was short lived. Was seriously thinking about getting out and about again more due to the better mobility and going back to more discreet, cloth backed products due to the decreased leakage. Unfortunately it wasn't to be. Back to normal again unfortunately. Long Covid is so frustrating. Every time I make progress it's back to square one. Makes me laugh I'd post on here before Long Covid and angst about after dribble and the odd accident on long journeys. Don't know what I was complaining about! Not all negative though as the osteopathy has really helped the IBS over the last year and that's not a big issue anymore so it could be worse I suppose.

Do wonder if it was the B12. Will go for another one and see if it improves things again. Some people on a Long Covid group I'm on did say that they noticed improvements after a course of B12 but it started to trail off.

Will go for a day out at some point if/when the virus has died down. A lot of Changing Places bathrooms have rocked up in numerous locations around London so that's made me more confident about going out.

 

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@Sci_Fi_Fan Yes, please let us know if the B12 helps again.

 

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@snow Will do! How have you been getting on Long Covid wise?

 

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My cough seems to be totally gone but maybe that was because I was by the humid sea for three weeks instead of in the dry desert where I typically reside.

Brain fog wise, I visited with 14 different friends on my trip. I often, embarrassingly, caught myself saying “house” when I meant home, and all kinds of other similar errors. I had to concentrate hard to not look like a total ass. I think my friends all understood and sympathized, but it still made me anxious. I managed, and the trip was entirely worth it.

 

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@snow Glad you managed to get out and see some friends. I'm with you on the messing up words thing, I'm always saying the wrong word.

 

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Really not having a great day broken body wise. I feel like I can't do anything I used to and my body's just completely failing. Whereas I just used to get on with the bladder/bowel stuff when I was otherwise fit and healthy, now I'm physically disabled with mobility issues, the incontinence is just another reminder that my body is well and truly broken.

 

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@Sci_Fi_Fan - I definitely understand what you mean. Being an amputee I feel the exact same way. Having mobility issues on top of bladder/bowel problems is the worst. I’m terrified of having a bowel accident in public. How the hell will I clean up? What if it’s in a day that I’m in my wheelchair? The anxiety is endless.

 

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@justej I'm getting tired of having to constantly fight against my body. Sometimes I just give in and don't do anything but then feel guilty about it. Hoping once my university course starts I'll feel better as I'll have more focus. Signed up for an online study skills course which starts in August as a way to keep myself occupied.

 

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Had a really rough day of it today and at an all time low. I walked half a mile to the GP surgery to reregister and it was awful - thought I was going to fall over multiple times. Seriously considering hiring an electric wheelchair but feel that would be giving up. However, I can't go on like this, if every time I walk a short distance I'm out of action afterwards I can't see my degree going well.

 

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Please consider getting a walker. Reduce the chance of falling and give yourself something to rely on when you have to go from point A to point B. I speak from experience.

 

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@Sci_Fi_Fan I’m sorry you’re feeling so low today. I think hiring an electric wheelchair is a great idea, and it’s not a crutch, it’s a tool, just like a diaper or eyeglasses. Something that gives you access to life should be embraced as rewarding. I’m sorry you couldn’t find someone to give you a ride. Do you have Lyft/Uber over there?

 

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Hi @Sci_Fi_Fan, I know a day like what you've just had is no fun at all! But renting an electric scooter would probably be the most practical thing to do especially if there's going to be some distance involved. But although I understand and sympathize with what you mean by giving in to it is like giving up, I think it's something practical to consider and it may save you from falling unexpectedly which would be even worse and even more embarrassing. And it will help you save your energy to devote to earning that degree!
And here's another thing to look at: renting this scooter would be only temporary, really, until you get back on your feet!!! If it were me that's how I'd see it. And yes, there's always the possibility of having someone give you a ride.

 

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Thanks so much for the support guys - just completely broke down yesterday. Been really struggling and the trip to the GP just really hammered it home. To be fair, I was seriously considering getting a wheelchair last year but figured I'd recover before too long - now it's a year on. It's a tough call in that it would make me more mobile but not everywhere is wheelchair accessible.

Thinking the best option would be to try and get a hybrid style one which can be used manually as well - that way if the battery runs down I'm not stuck.

 

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I think the hybrid style sounds like a good option (although I'm not familiar with that) but you know this is just until you can get back on your feet again so you'll have some help until that happens! Just keep it in your mind you're going to recover but it'll take awhile and the road to recovery sometimes takes a different route than you've anticipated. But that is your ultimate goal and keep that in sight!!! And remember, you'll have good days along with not-so-good days. And may the good days soon overrule the not-so-good ones!!!!

 

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@Sci_Fi_Fan Sounds like a good idea (the battery/manual combo). My mom is from England so I’ve spent a lot of time in the UK. I can imagine how some (most!) of the older buildings there aren’t wheelchair accessible. In the US, we have very strong laws for buildings and the disabled, via the Americans with Disabilities Act (ADA). So public buildings here have to have a wheelchair accessible restroom, ramp from the parking lot to the front door, etc. But some of the older buildings on the east coast get away with not complying. The west is big and new, so we have a lot more space to ensure ADA requirements are met.

 

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Thanks guys!

@snow Yeah, it's definitely a mixed bag when it comes to accessibility. Fortunately I live near London so it's better than most places (but not still not perfect).

Went to an event at the Charlton stadium today and whilst it was great to be out, walking and getting about was a real struggle. Really not coping with just a crutch. Due to lockdown and where I was living before I moved, I've never had to walk far.

Really think it's time to try a wheelchair, I want to be out and independent and being laid up after every time I have to leave the house isn't doable, especially when I'm supposed to be starting a degree. My Mum's dead set against the idea, refuses to entertain it and just wants me to do stuff when I have someone for support with walking but that doesn't really seem to be any way to live when there's a solution. Of course, using a wheelchair comes with its own challenges and annoyances but I'll just have to learn the ropes and accessible routes (which I'm effectively doing anyway due to using a crutch). I'm ultimately just sick of being stuck in limbo, lounging around the house waiting for a Long Covid cure. Waiting times for LC clinics are crazy and I can't even get in at the GP's. I just want to live life - nobody knows what the prognosis of Long Covid is - if anything it's getting worse over time.

 

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Hi @ Sci_Fi_Fan, I agree with you in that getting a wheelchair is the most realistic thing to do at this point. Although of course using a wheelchair does have some limitations, I think overall it will allow you to become more mobile and to be more independent. And it won't sap your energy every time you go out, like when you have been trying to walk somewhere. I don't know why your mum would be so against the idea but, hey, you know your body and you know what's right for you!! And if you wait for someone to come around and help, you won't get anything accomplished because you'll just be hanging around and waiting!! When that happens you have no control of the situation but with a wheelchair you can control the situation. If I were you, I think the next thing to do would be to try to convince your mum that until you get in a better position that a wheelchair is the way to go, mainly because it will help you be more independent and also it's a good way to conserve your strength for the things you really have to do or want to do!

 

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@Sci_Fi_Fan I don’t understand why, but throughout my life my mom has been reticent about helping me get medical care or agreeing that I need it. It’s almost like she gets jealous that I need/get attention. So weird. You have to live for you, no matter what she thinks. Separating from the emotional burdens our parents drown(ed) us in is a lifelong battle that must be fought as we continue to evolve through adulthood.