More Long Covid woes!

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Hey all,

Been having something of a rough time. Whilst my wheelchair adventures started positively, been having massive issues due to the terrain where I live. The breaks came loose due to all the vibrations from uneven pavements and roads and then the screws in the U-Drive system (which allows me to use my manual wheelchair as a powerchair) came loose which left me stranded at home until an engineer could come out. I still feel like I take my life in my hands every time I try and move around my hometown so mainly just stay indoors.

I’ve also been having massive issues getting a referral to a Long Covid clinic due to how awful the GP surgery here is. A couple of months ago I went for a medical exam and a chest X-ray on crutches and it killed me and was really unsafe but figured that was that. Turns out the GP had screwed up the referral and tests need to be done again. Only issue is because I haven’t been able to get physio due to issues getting around town I can’t even go to the GP surgery on crutches and it’s completely impossible for me to go to the surgery from my place in a wheelchair due to how inaccessible the route is and the lack of wheelchair accessible taxis here. Tried to get someone to come out to me to get a blood test done but as I wasn’t ‘registered as housebound’ that was a no. I did explain that I couldn’t get there and a GP even said I could have a nurse come out to be but no movement from the reception. My Dad’s coming down to take me tomorrow (he lives ages away) and hopefully I’ll get to thrash stuff out with the GP in person tomorrow. The issue is that nobody’s monitoring my condition so nothing’s really on file. The main GP who’s been handling my case is useless and doesn’t add any notes. My Mum’s been really ill as well so that’s been really stressful as well.

Only upsides are that I’ve started the process of registering for disability benefits and whilst it’s been a nightmare, I hope that eventually I’ll have at least some money to cover the costs of all my incontinence products and the added costs of disability. Apparently most people have to appeal and due to how patchy my GP records are I’m not hopeful as my main evidence due to Long Covid is a badly written GP letter.

I'm due to start a Master's next week so that's something as well! My funding for transport to and from there hasn't come through yet though so it's going to be tough trying to get to the train station and back. Some of it's online though so if I can't make it in it's not the end of the world.

Just feeling really frustrated. Really appreciate everyone on here though, this place is a real lifesaver! Thanks for all your support - crazy to think when I started posting on here I was angsting over after dribble and semi-regular urge accidents when I think of how bad my health is now! Have booked to go to a Star Trek convention in November as a way of getting out of the house. Will swallow the cost and get taxis there and back and stay in a hotel next to the venue. Wish I could get out more and do more small things but it's something to look forward to!

 

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You're a trooper! Do everything you can to get the stupid GP to put all your needs as homebound in writing but you are INVINCIBLE

 

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@Maymay941 Thanks! The really frustrating thing is that I needn't be housebound if where I lived was more wheelchair friendly and/or there were wheelchair accessible taxis. The minute you enter the official London area everything becomes that bit more straightforward - better pavements, all black cabs are wheelchair accessible etc. It's not perfect but I managed to get around Croydon okay when I went to a Nick Cave show - it's my hometown that's the issue.

 

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I doubt the government could do this, but could they allow a relocation or help doing so ?

 

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That's big issue I can't remember but was it covid that debilitated you to the wheelchair I think?
It sounds like you are also looking out for your mother?
If this is to be your new long therm lifestyle there must be changes to increase your ability to live your best life. there must!

 

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@ICGamer @Maymay941

You can register for council housing but think it's just in your immediate area. Hoping to save enough to be able to stay in university accommodation next year. Once the Long Covid clinic referral finally comes through hoping I'll have a better idea if my mobility issues are permanent.

Thanks for the support guys!

 

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@Sci_Fi_Fan I’m so sorry your GP is useless; that’s so frustrating. It’s much easier here in the states to change doctors any time you want to. I’m also sorry your long-COVID is still causing so many problems for you. I’m also sorry about your mom; I know how that goes. I’ve rarely been as devastated as I was when my mom was seriously ill. I know exactly what you mean about an English town having crooked pavement. Perhaps you can move to the Western U.S. where almost everything is modern I think the Star Trek journey sounds wonderful and an excellent idea. They say that planning and looking forward to a trip is at least half the fun of a trip, and I agree.

Also, I’m very proud of you for going for your masters. I hope doing so can help distract you from some of your frustrations. Despite still having a school loan, I have ZERO regrets about getting my MFA. I wish you the same love of your education.

 

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Hi @Sci_Fi_Fan, I really sympathize with you on your GP issues and all of the hoops you have to jump through to get any consideration. Describing the rough terrain that has wreaked havoc on your wheelchair, do you live in a rural town?
I really hope your mum gets better soon because I know how stressful it is to have someone close to you have an illness.
But I'm glad you have your sights set on that Star Trek convention next month and concentrating on planning for that will be a good way to take up time. It's good you have a hotel room lined up and have an idea of how you'll go back and forth there. So we'll think positive thoughts about that and prepare yourself to have a great time there!!
Your planning and anticipating something that you have a real passion for is really a big part of the fun!
And it's really exciting you're starting your Master's next week! Well you just keep going with that and let nothing stop you!! That's because everyone here is with you every step of the way!!!

 

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@snow Thanks! Sorry to hear your mum had health issues as well. Yeah, there's a lot of stress and anxiety. I'd always just bury myself in work to get away from it which I can't do now and as it's so tough to get out the house I don't get much escape.

Looking forward to the Master's but kind of anxious as Long Covid has definitely made me less sharp but I'm sure I'll still be fine. Plus one of the premises is super inaccessible. What is it with people and just putting ramps in places thinking that'll be fine. This one has a tight 90 degree turn going up which my powerchair can't do. Going to have send an email I think!

The osteopath/physio I found didn't work out. Impossible to get into the building with a wheelchair. You'd think that people may twig that wheelchair users may be some of the main people in need of physio! Person on the door was super-apologetic and is going to locate a more accessible one in Central London. Mobility getting worse and worse the longer I go without any though. Hoping once my referral comes through they can take me there for physio.