Long Covid Chronicle - Wheelchair Adventures

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My wheelchair came and went out in it for the first time and whilst it was utterly terrifying and there were some moments I thought it'd tip over it didn't and I survived.

Whilst it's going to be a learning process and was really stressful words can't describe how brilliant it was to be able to go around the block and not feel completely destroyed afterwards. I also found my mood was much better than struggling with a crutch because I always feel so angry and annoyed all the time because of the discomfort that comes with walking.

The road (and town as a whole!) I live in is pretty awful for getting around in a wheelchair but considering I mainly just go into London to do everything, figure I should be able to get the station and then things should be easier.

Love my sports so added some stickers to personalise it which made me feel better. Going to be a long time before I feel fully confident in it but definitely see the purchase as a positive.

 

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Wow you HAVE been put through the wringer. Do stay vigilant on moving about with care.
Thanks for the up date as a long time here a,ways good to know

 

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Hi @Sci_Fi_Fan; it looks like you are fully decked out with your favorite team stickers and are now good to go!!!! Just like with anything else that is new to you, I'm sure that navigating the wheelchair is definitely a learning process and then before you know it, you will have gained a lot of self-confidence and you'll be saying, Why didn't I think of this before???"
And it must be liberating to be able to go around the block and not feel totally wiped out when you get back home. And more good news is you have what is probably a reliable railroad for getting into London and back and that's one thing that's definitely an advantage for you. Where I live, there is no rail service into the city (Orlando). For me the nearest one is Amtrak which has long distance trains to Washington and New York. And that's just a few times a week!!!
And to get to the nearest Amtrak station is nearly a 30-minute drive on a high speed two lane road!!! And that is a trip in itself!!!
I agree the purchase was definitely a positive thing for you and I always say do a bit more each day than you did the day before. It sounds like you'll have this thing down pat before you know it!!!

 

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@may941 - Yeah, it's been a rough year. Dealing with healthcare where I live is a pain but I've been referred to a Long Covid clinic and should be getting a GP note outlining how I'm physically disabled due to Long Covid which will mean I can access sports/music venues and more importantly university. Ready to live life again! Whilst it was a pain getting out for the first time today, I haven't been able to go for a stroll on my own just because for over a year so it was nice to get out independently. It was also nice having my left hand free to do things with.

@billliveshere Yeah - public transport is good here so it should be all right. Fortunately my university is close to one of the direct London stations from here and my dad's going to do the route with me. London taxis are all wheelchair accessible and Uber has accessible cars around London so once I'm there should be easier.

One of the main things for me is how it clashes with my autism - tend to always try and avoid random interactions which is hard in a wheelchair as everyone offers to help when you don't need it. Someone got quite annoyed when I politely declined their offer for help.

 

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Hi @Sci_Fi_Fan, It's really good that your dad is going to go over your route with you as far as getting into and around where you need to go in London are concerned. Two heads are always better than one and he may see things that you may not have been aware of. It sounds like London does have a lot of accessible transportation. I can't say the same for a place like Orlando, in which everybody is dependent on having their own car or truck or SUV. So you're in a pretty good situation as far as getting to where you need to go is concerned.
I guess the best thing to do if someone offers to help you and you don't really need it is to smile nicely and say something like, "Thanks anyway. But I'm good for now!!" No other explanation is really needed!!!

 

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@billliveshere That's how I was which is what felt odd. I'm not surprised though, I've been watching videos on YouTube by a guy who discusses mobility issues and using a wheelchair and he said that it's a common occurrence for people to get offended when you politely decline their offer for help because well, you don't need any. It's also somewhat amusing as I had to go for a chest x-ray the other week on two crutches (was having a very bad day of it) and really struggling but no one said or did anything whereas in a wheelchair I can actually do more as I have free hands and I'm not using all my brain power thinking about moving and avoiding falling over. Plus, I'm not in constant discomfort so I'm more focused. It's odd - whilst most people would see a wheelchair as a sign of being more disabled, I feel far less disabled using a wheelchair than crutches. Part of my issue is it's mainly one side of my body - so even if I'm just using one crutch I have to use my bad hand to do everything.

 

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I have an apple sticker on my wheelchair


I also stickered up my prosthetic leg

 

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I think then that is proof positive that a wheelchair is actually an enabling device although most people who see someone in a wheelchair would automatically think "disabled and needs my help."
But it sounds like, especially when you get really used to the wheelchair that's it's a matter of "I'm doing fine, thank you!"
It probably doesn't occur to a lot of people that using you wheelchair enables both your hands to be free while using one (or both) to maneuver with crutches makes for a lot more work on your part!!

 

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Hello all.

I've got a spinal cord injury or sci for short, c3toc7 incomplete. It's from a disc at c3-4 level which nearly severed my spinal cord, my spinal cord is damaged from it.

Started having problems almost a year ago. By the end of October I started to have problems with walking and standing. By thanksgiving I could barely stand let alone walk without randomly falling. I was given a recommendation to get a wheelchair I agreed and my pcp wrote a script for it so my insurance would cover it.

I ended up having to get surgery done.

Since the damage is done to my spinal cord, it's left me with other secondary issues with respiratory, GI issues,bladder, and weakness of both arm's and hands with numbness in them and curled up fingers. I still can't stand or walk for long periods of time. I still use a wheelchair.

I have both a manual chair and a second hand power chair, i mainly use the manual wheelchair. The power chair needs new batteries thus I only use it to run to the gas station a half block away to grab a snack or use it around the appartment complex for now until I'm able to get new batteries for it.

 

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@compwiz878 Sorry to hear about your difficulties. I get what you mean about the power chair battery running down, mine is new but considering the pavements around here are really bad here and it's quite hilly I'm surprised how quickly it runs down because I have to use full speed all the time. I'm able to use it as a manual wheelchair but not brave enough to go out unaccompanied acoustically as it were –full on electric for me at the moment.

How do you find using it manually with muscle weakness if you don't mind me asking? I only have one good arm/hand and worry that my right side wouldn't be up to the job. I self propel around the house without a problem because it's flat but feat I would struggle outside in my hometown.

Through a lot of trial and error I managed to find a route to the train station –still pretty terrifying around here given the pavements and roads but think it's doable. Was nice to actually be able to get out the house for once even if I did get stuck a few times and people had to help! I now know which curbs to avoid. I'm reminded of the old adage that you only learn by making mistakes. Managed it issue free second time around.

 

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Getting more confident using the chair and it’s amazing how much more I can do and how much better I feel physically but I have to say that using a wheelchair as an autistic person is an absolute nightmare as there’s so much added social interaction due to the assistance required on transport. I’m also reliant on taxis which previously I always tried to avoid as I find random 1-1 encounters very nerve wracking. Plus, I can’t put my headphones in to block out outside noise as I need all my wits about me navigating pavements/roads etc.

I’m getting there but it’s going to take some time. Think I may get some therapy for how to better cope in social situations like that.

 

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@Sci_Fi_Fan I’m not autistic (at least I don’t think so) but I get what you are saying about interacting with others. I use a service called metro access and it’s a van with a lift that takes me places. That way I don’t have to take the bus or train. I hate when people ask if I’m ok or if I need help. Yea I get that they are just being nice but I’m pretty capable with my wheels and one leg. I also rely on my headphones a lot and make sure they are always with me.

 

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Hi @Sci_Fi_Fan, It's good to know you're getting there and the fact it will take some time to do it is a very realistic assessment. It will take time and the more you go out and go places and do it, the easier it will become. Then one day you'll say, "That wasn't so hard!" But to use one of my favorite clichés, Rome wasn't built in a day!! OK, I admit I'm guilty of using clichés!!!
And EJ,. I know what you mean when people keep coming up and asking if you're OK or if you need help. If someone asks me that (someone asked me the other day if I'm OK) I would say, "Why, do I look like I need help? I'm perfectly fine, thank you!" That kind of puts the onus on them!
Or if they persist, maybe say, "When I get to the point I need help, you'll be the very first one to know!!!"

 

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@justej @billliveshere

The community transport option sounds much better - there is a service here but it only covers the immediate area where there isn’t much to do. I live about thirty miles from Central London so it’s very much a commuter town - the proximity to London can be a double edged sword as whilst it’s convenient it means everyone just does stuff up there (myself included before all this to be fair!) meaning little to do around here. Plus, as I’m not in London but in Kent no black cabs which is a pain for taxis in terms of wheelchair accessibility.

I think the issue with transport here is that you have to ask for assistance as getting on trains entails someone at the station getting a ramp so you can get on and as it’s very awkward to navigate (and helpfully my wheelchair always gets stuck on them 3/4 of the way up) I effectively need someone to push me up. I suppose if I just used my chair manually I could get up, use the crutch and lift it onto/off the train. It does appear the drive system I have is another double edged sword in that whilst I’ve been impressed how much I can self-propel given my right hand/arm weakness I really need the electrics to give me extra help when needed but it means the chair becomes too heavy to lift with it attached and so need ramps.

I’ve been better at accepting help from strangers and often I do really need it. It’s ultimately just the autism. I also find it’s very much a case of ‘use or it lose it’ when it comes to social skills. Given I’ve been a teacher for three years I can definitely handle social interaction however as I’ve been at home on sick leave since March and haven’t really been out anywhere since it’s very overwhelming sensory wise to be back in social situations.

I’ve looked for stuff to do in the local area considering the added cost of taxis I have to consider nowadays (the cost of going somewhere in London and back has now doubled for me due to taxis if I use Uber and tripled if I use the traditional black cabs). There’s an organisation that organises trips and activities for disabled/special needs adults and whilst I’d never done something like that in a million years beforehand I think I may give it a go.