Bit of an Update - Some Positivity!

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Hey, haven’t posted here in yonks! Managed to get Covid a third time which was awful and whilst it’s made my IBS worse it didn’t cause a significant worsening of my condition. My wheelchair broke and I tried to get around without one whilst it was getting fixed and that was a complete disaster and laid me up so that was proof that my neuro issues haven’t improved at all.

Physio’s keeping my condition relatively stable though but I think he’s being over-optimistic as all the neuro stuff isn’t being touched and it does seem there is some damage there.

I’ve decided to go back to uni in September come what may. I’m not getting any younger and I’m even further behind my peer group now than when I just had Autism and ADHD to contend with. They’ve been super supportive - it seems more like a school than a university (very small and supportive, everyone knows everyone) so will be a good fit I feel. Have mountains of admin to sort out but I really need to get back out into society.

Went to an Autism show at the Excel in London which was super helpful. It’s really made me accept that I do need help and support with that in a way I haven’t before due to physical disability being incompatible with many of my coping strategies. There may also be a housing option as I spoke to an organisation there who have assisted living properties in London and my local council use them. Essentially, if I factor my learning disabilities in there then I can get out the area as there isn’t a provision locally. They’re planning to open some in Croydon soon which would be great. I’m going to get my Mum to call them.

I’ve also completely given up even trying to mask. It was too exhausting on top of the chronic fatigue and I figure if I need to wear ear defenders and chew on a stim toy then screw it. I’ve also fully embraced adaptive aids be that clothing or footwear. Going back to velcro shoes has cut my time going out the door by at least fifteen minutes! It is amazing how much my executive functioning has gotten worse due to Long Covid but I’ve just got to roll with it.

Fully at the acceptance stage now. If there’s some miracle cure later on then great, but I’m wasting my life waiting for a Long Covid cure and I can get out there if I accept help.

 

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Fantastic to hear. Best of luck at uni

 

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Your positivity and efforts to get on with the business of life are always uplifting!

 

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Good to hear from you again, I had been hoping you were OK after reading your last posts some time ago. Sounds positive, as you say, especially that you may get to uni, and possibility of housing - that would be fantastic.

 

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It’s funny - not long after posting that a wheel on my wheelchair broke. I’d decided to stay over as there’s a festival on in my hometown and getting into London for my improv class was going to be a nightmare access wise. Went to the Autism show at the Excel which was really positive and opened up some avenues. Stayed in a nice hotel and then blam, two seconds after leaving the hotel it breaks.

Still, I managed to get it to my improv class with three tyres and a rim. There’s a rally driver called Kris Meeke who did the same at a street stage in Portugal a few years back after he used up his tyres so I’m in good company.

In a cab back all the way home - a very expensive trip! Nothing drains one’s bank account like disability! Will need to pay to get it fixed as well as if I do it via insurance it’ll take a month like last time.

 

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The hidden costs and lifestyle adjustments of disability!
Hope for a fix as quickly as can be you have things to do, people to see!

 

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You have such a great attitude! Sometimes the difference between being happy and being miserable is all in how we manage our own interior dialog. It sounds like you're doing great!

 

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Thanks for the comments everyone! Today was very much proof of expect the unexpected with disability. Still, best it happened today when I didn’t have anything to get to next week rather than when I’m away with my Dad to watch the F1.

It also acted as proof that I really need to think about housing and indeed that it’s wise never to wear nice clothes as they may get messed up. Stain resistant shorts and polo shirts all the way!

Lots of admin to do but definitely going to make the best of it. I also have to remind myself that my executive functioning is waaaaay behind my actual age so I shouldn’t beat myself up for not being up there with my peers, especially as physical disability really drove a steamroller through everything.

The autism show was super helpful and it also was proof I still need to cut myself some slack as some of the talks were super helpful in that regard.

 

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@Sci_Fi_Fan Bravo ; so happy to hear you’re moving forward and feeling better about your choices ))))

I think you can wear nice clothes if you wear black pants.

What you wrote, “Nothing drains one’s bank account like disability!” couldn’t be more true. Because I can’t afford my knee replacements yet I’m having to use a cane and walker for the first time in my life. Well, I’ve used them before, but just for surgery recovery, not for daily use. I’m only 47. This is supposed to be stuff that happens to 70+ year olds. I’m grateful it didn’t happen to me when I was 20.

Anyway, keep us posted about UNI housing; excited and hopeful for you with that. You’re right: we’re definitely, DEFINITELY not getting any younger!

 

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@Snow as a way to improve daily life can you get aground floor apartment facing east or was it south you prefer?

 

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@Maymay941 Hi dear. I prefer to face south for bright light to combat depression, but I currently face west for the first time in my life. The winter WAS harder emotionally that way. At least I get to see the sunsets and I have a large, beautiful deck brimming with flowers. My condo is on the second floor which will be tough after replacements, but stairs are a fact of life that my new knees will have to learn one way or another after surgery. The stairs are low and wide with good handrails on both sides. I just make sure I go down one at a time, slowly. I’ve only been in this gorgeous unit for eight months. I’ll probably have to renew my lease because I can’t afford $14,000 for professional movers again in just four months.

Just in case I do have to leave, I have only packed about half of my stuff. Part of that is so I wouldn’t have to pack again if I left soon, but part of it is equally that I’m in too much pain to unpack heavy stuff as a single female with major bone deterioration everywhere in my body. So we’ll see what the next few months bring. If the owner dramatically jacks up the price as is common these days, I will be forced to move again so soon, which would be pure hell. So fingers crossed that doesn’t happen.

I get new knee injections on Monday and I can hardly wait because I’ll feel born again, like I’m walking around on pillows, and I’ll be able to get a lot done without so much Aleve, Tylenol, and walloping, depressing, exhausting, nauseating pain that leads to me crying several times a day, every day. I remember when the corticosteroid relief used to last for 6 to 12 months, 13 years ago. It worked well enough that I could still ski, snowboard, backpack, and rock climb. The injections are supposed to last for three months but now the relief is only lasting for six weeks, and is not as consummate as it once was - for instance, they no longer provide enough relief for me to ski. That’s okay; I’ll take what relief I can get.

Not only is it not good for one to get corticosteroid injections more frequently than every 12 weeks because they cause heavy scarring and other damage, insurance won’t pay for them more frequently than every 12 weeks. I’ve considered seeing a second doctor and getting a second set of injections that I pay cash for at six weeks, while keeping both physicians in the dark about doing so, but it would cost around $350 to do that and makes me too anxious that my insurance company or doctors would find out I’m doing that and then not approve the knee injections with the first doctor.

So I just try to cram as much activity (like unpacking) into those first six weeks and plan for deteriorating hell for the next six weeks after that! I save my pain meds from the first six weeks because I don’t really need them then like I’ll absolutely need them in the second six weeks.

My knee pain is by far the worst thing going on in my life right now. I haven’t felt physically comfortable day or night for years now, like so many of us here on the forum. My knee pain and buckling/locking are a much worse problem for me than incontinence or back pain currently, which is hard to believe! I bet once I get my knees fixed, my back will feel like the most painful thing again because that’s how our brains perceive/manage pain.

I can hardly wait until I have enough money saved to get the replacements but I sure feel like it’s taking forever to get there. My co-pay will be a minimum of $6,000 per knee. Then I also have to save money to get some nurses in to help me from care.com for the first 14 days because apparently insurance companies never pay for inpatient rehab, unless you have major complications. I also have to save money to take the time off work (6-12 weeks) with reduced disability pay. It’s all very expensive. So many people have had knee replacements, but I don’t understand how they all afford them. Maybe since most people get to be older when they get replacements, unlike me having needed them since age 40, then later in life Medicare pays for the knee replacements at a better rate than my insurance does, so this replacements cost less money for older people? I have to get the replacements now and then again likely around age 70. I was first told I would need the replacements when I was 27 years old and then very strongly urged to get them at age 40 and I should’ve been saving for them for a long time already, but as you may recall, I was not emotionally prepared to get them until about a year ago. Also, I stupidly assumed my parents, who could afford to help me and sometimes do, would help me. I’ve asked them directly a number of times, and the answer is no. That’s fair; they worked really hard to earn their money, and they have the right to use it for themselves.

Thank you for checking in on me.

 

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@snow sounds like a you are doing the best you can on enjoying the place you are in.inwas hoping to shake something different out of the bag of options for hope but you have very clearly mapped out the plan that works best for you inspite of being in constant pain.

Glad for the flowers and sunsets for you.
Itwill be really good to hear when you are apres knee! (Pun of sorts on apres ski, bad one I know).

I imagine you and others here read about the two American tourists pushed off the sight seeing bridge in Germany.
Whenever I read of incidens of terrible falls or car crashes I think, there's another one likely to be in our boat, navigating pain and diaper wear the rest of their lives.