I really wish covid had triggered a clean air revolution on the level of what clean water went through. Been struggling as an immunocompromised individual in the modern world. I'm still basically a hermit. My wife goes out and does stuff and we still do an in-home quarantine (masking in common areas, air filters, etc) and I've avoided illness for the most part over the years, but its so lonely. Now everyone seems to be more sick all of the time and its feeling like this life of isolation will never end. I can't really go out and do things without wiping out my energy for several days, which doesn't work well with needing to hold down a job.

Just ranting, sorry. Trying to get more involved with megathreads.

I feel like it's not my place to talk down on caregivers of Autistic people but I'm an Autistic person and it rubs me the wrong way when they take up space in the community. Especially at work where the only Autism awareness topics are about caregivers and kids. I think they do have a place in the community, but it shouldn't be about them, it should be who they're caring for. Then they can do their own caregiver support groups or whatever.

Well another day, another miserable load of shit. Since having a stroke, my left side has been weak, especially my left ankle. It's so weak the physiotherapist said I need to wear supportive shoes all the time, even indoors. However because of my (unrelated) foot surgery, I've been unable to wear shoes for the past 5 weeks. Now my left ankle is weaker than it's ever been and it's causing me a lot of pain and difficulty walking. And because the NHS is so shit my next physio appointment isn't for nearly another 6 weeks.

In fact, the NHS is absolutely falling apart. I can't get a GP appointment for anything at all. And every specialist just wants to do phone or online appointments now. I had an endocrinology appointment today by phone. It makes it difficult to talk openly because there's no privacy, my landlady can hear everything and there are some private medical details I don't want to broadcast. Which means I didn't feel comfortable saying everything I needed to say and so didn't get all the help I need. I'm still waiting for an appointment with the neurophysiotherapist, and my normal physio appointments are months apart even though I should be having one every few weeks. Some of the meds I need are out of stock at the pharmacy and the hospital. The amount of effort I have to go to to stay on top of all of this nonsense is equivalent to a full time job. When I'm supposed to be resting and recuperating. And this is all on top of the effort and stress of my benefit appeal.

It makes me furious when I hear government ministers whingeing about how too many people are long term sick. When it's virtually impossible to get the medical help you need, you're constantly struggling to survive due to how difficult benefits are to keep, and none of the organisations that are meant to help do so, is it any wonder so many people are sick, stressed, busy and can't work?

Oh and my landlady has just put the house on the market as she can't afford to keep it any more. So we'll be going through all the upheaval of a house move too. Please Russia just drop a nuke right on top of my head so this can all be over.

Just found out my partner got the flu this weekend. I'm still symptom free and we already had a quarantine protocol in place for after public gatherings. It's just hard, instills a sort of anxiety in me to know there's an illness in the house and I could do everything in my power to avoid it and it could still turn my life upside down if I accidentally breath in the wrong space. It's also lonely being isolated from the one person I get the interact with in person most days.

So my landlady put this house on the market as she can't afford to keep it any more as I'm her only tenant now and I owe her a lot of money. She found a house she might be interested in, just a few doors down and we had a look at it today. It was awful. The house we live in now has an annexe attached, which my landlady lives in. She rents out the main part of the house, but I've been her only tenant for a while so I've been living in the house, effectively alone, except that we share the kitchen and garden. This means I've had a lot of space and privacy, the rooms are a fair size. This has been the only thing in my life that has actually been decent and tolerable.

But she needs to downsize to a smaller, cheaper house, and seeing the kind of thing she has in mind is filling me with dread and anxiety. The downstairs, which she would keep for herself, is fine. Reasonable-sized rooms and in good repair. Apart from the kitchen and utility room it has two rooms, she'd use one as a bedroom and one as a living room. The upstairs, which I would have to have, was horrible. It's 2 rooms, she said I could have one as a bedroom and one as a sitting room. But the rooms are so small, the bedroom would fit my bed in and nothing else, I wouldn't even be able to walk around the side of the bed so I don't know how I'd get on. The other room doesn't even look big enough for furniture. I'd go from a nice spacious place to being crammed in, in a place with filthy carpets, and general poor repair. I am dreading this so much. It's especially bad because, being disabled, I spend the majority of time at home. If I could have a life and job outside, and only needed to come home to eat and sleep, it wouldn't be as bad. But spending pretty much 24/7 crammed into a tiny horrible prison will be unbearable.

I could look elsewhere but I doubt I would find anything cheaper. It sucks being poor.

If you're in the UK please sign this petition against cuts to disability benefits. Everyone please share the petition too.

https://www.scope.org.uk/campaigns/the-cost-of-cuts

Maybe the hormones are helping in some roundabout way?
Hope your assistive tech application get successfully processed swiftly!

What a wonderful day I had...

I've had a near mental breakdown on Friday when I realized that I had regained all the weight I lost last year (15.5lbs roughly) in a span of 6 to 8 weeks. After going through everything I've eaten and my daily schedule, I arrived at the very uncomfortable conclusion that it could only be the amount of glucose tablets I've been eating. That usually isn't a problem when I have low glucose levels, the extra sugar doesn't just add weight, but you need more carbohydrates to get back on a healthy level and that will eventually end up as excess weight. Next step was to check glucose levels with my god-forsaken-blasted-shit-thing of a CGM, which kept telling me I was in dire need of glucose tablets ALL THE TIME, and parallel to that with a regular glucose meter. Big surprise, the difference was sometimes over a 100 mg/dl. While the CGM said I was about to pass out, the glucose meter showed me a very stable 120 to 150 mg/dl. The blood glucose levels feel/felt a lot closer to my personal perception, thus I decided to quit using the CGM. If there's no reliable data, how tf am I supposed to trust this thing?

This was just the tip of the iceberg of issues I had with the CGM, it's been ripping me out of my sleep multiple times a night because of error messages or the helpful "connection lost" notification because sometimes when you lie under a warm blanket in winter, it can't hold the connection and goes off yapping. So I decided to email my doctor and ask if I could have test strips for the glucose meter and quit using the CGM.

Not my doctor but a diabetes councilor I've never met emailed me back, asking if we could talk over the phone. I've had a few bad experiences with diabetes councilors over the years, so I refused the phone call. In a later email by the councilor, I was told that my doctor could not issue a new script for the test strips while my CGM is still approved. I was told to cancel the script for the CGM with my insurance before I can get a new script. I called the insurance, and they told me I need to cancel it with my supplier first. My supplier was the only helpful one (the guys who make the shit system have the best customer support??), they canceled it immediately. So I called back my insurance and they will now cancel it on their end as well. So far so good, right? Hah, nope. After texting the councilor back about the cancellation, my doctor actually mailed me. She said I'm now getting the test strips, even though they're only approved from the beginning of April, when my old script runs out. But she just had to say "Giving up the CGM means a huge loss in security for you personally and I personally regret your decision."

And I've just fucking had it. I finally get some quality of life back by switching from an unreliable system to something I've been using for decades without issue, only for my doctor to shame me for not wanting the unreliable gadget anymore? I don't want to see doctors about diabetes stuff anymore because all they tell me is that the CGMs are the best stuff. It's always the fucking same, it's never about what makes me feel comfortable and safe, it's always about a medical professional getting extra pay for selling you some shit that will not help. I hate this, and while I did get what I asked for, she just had to shame me for wanting to be happier about my disease and my quality of life.

If you could live in my body,/ just for a day,/ maybe you wouldn’t think/ that I feel okay./ You might understand/ what it’s like to be tired/ by just trying to live,/ just doing what’s required./ If you could live in my body/ you might begin to see,/ that a simple drug/ won’t set me free./ If you could live in my skin/ you’d learn to understand/ that it’s not in my head,/ nor was it planned./ I don’t want your pity/ or to make you resent./ But I don’t need to apologize,/ or have your consent./ I am sick and I’m tired/ every single day,/ and it won’t help to ignore it./ So listen when I say:/ it helps when I relax/ with a friend and some tea./ You can’t understand/ but please, believe me. -- Submitted by Beth Turner, © butyoudontlooksick.com.

I found this while reading about Spoons Theory, on Christine Miserandino's blog, while trying to understand more about myself.

Hugs to you all, wishing you a few moments of peace and relaxation, and a safe place to rest.

::: spoiler CW: suicide, depression shit - please engage with caution, I just need to get this out I came across the poem right before finding out that a relative who had been struggling with prostate cancer took their life rather than continue with the treatments. I still don't know how to feel about it. Part of me understands. Part of me is screaming that something more should have been done to help them, whether for care, or for aid to a final rest. They deserved better. We all deserve better. It shouldn't have to be this cruel, and that fact triggers an emotional response stronger than the grief. I'm just trying to take it a couple hours at a time. It's proving complicated to process despite not having been close to that part of the family for a while. I want to help but I just don't know how or where to start, or whether I'll have the spoons to do what I need and want to do.

I've finally been given an appointment with the neuro physiotherapist, this Monday coming. It's been 5 years since my stroke - it's taken this long to get this appointment. God bless the NHS.

Still doing my light exercises! Today I rode the exercise bike in my work gym that doesnt dig in your ass as much as the other one and it was so nice

I thought biking would hurt my ankles because just regular walking does but it was fine, I'm really hoping it'll help with my circulation

I'm so happy you can sit up and I hope it'll only get better from here!

ah, my father told me i just sit in my room and play video games all day. i talked it out and explained why that is so hurtful, but it still fucking hurt lol. gave me a panic attack i'm going to be kicked out (i'm not, don't worry friends) for being a burden and not recovering fast enough, and i can still feel the residual anxiety

i also ruined the food i got before this happened because i can't eat for a few hours after a panic attack and it got cold :( i haven't gotten take out in eons

im back to taking a break from this site until im more stable but i hope everyone is having an alright time

a while back someone posted about a specific type of uv light that's effective against viruses, does anyone have experience with these? are they worth it?

Got myself worked up over trying to find an exercise routine and feeling overwhelmed, decided my goal for march is to work myself up to doing the routine I found and hopefully get to 20 minutes walking uninterrupted