I have no shame about it or anything like that, I suppose I'm mainly anxious about getting access to a new and way more expensive mobility aid, especially with the conditions I have
Until I got long COVID in 2021, fibromyalgia and scoliosis were my main physical concerns. I've been a full time 2 crutch user since then. As of a few months ago I'm still undergoing cardio investigation, most likely PoTS but even on an urgent referral I've still been waiting months now for my 24hr ECG and cardio specialist appt. SINCE THEN I got the new COVID variant over Christmas and have now been very unwell. Sleeping 30+ hours in a row, only being awake a couple hours every couple days, no energy, I can no longer stand more than one minute even with crutches or a surface to lean on without fainting. I'm rarely lucid, which is why I've been absent so long and why I'm writing this vent/update now. If I'm not sleeping, I have super basic comedy series I've already seen 3 times playing just for noise and visual stimulation to pass the time, while taking nothing in at all
The treatment for fibro is exercise, so the use of mobility aids while helpful, is generally treated as a "last resort" as maintaining muscle mass and as much independent movement as possible is important for symptom management longterm. At least, this is currently what the medical professionals I've seen so far have been saying
But long COVID is uncharted territory. It's so new, and so different for everybody. And many people need wheelchairs for PoTS, a common by product of long COVID, though I haven't yet heard of people needing a wheelchair for LC (please correct me if I'm just super uninformed!), at least with a presentation like mine (i.e. no organ failure)
I still don't even know yet if I even have PoTS or another heart condition. All I know is I'm tachycardic, and my active stand test showed an increase of over 50bpm in just over one minute (109 sitting, 113 at time of GP setting her stopwatch, 152/153 at 1min, and 162/163 when she insisted I sit down a few seconds later). My heart rate was also 150bpm+ sitting in hospital all night last April after I had a fall, which is when concerns were first really raised about this
I'm just so weak now. I've been fighting for so long to manage my health and maintain my independence, but COVID is doing a number on me and there is only so much fighting I can do against this. I've already accepted at home support after a year of declining my care coordinator's pushing to refer me, also a lengthy waitlist though. But I think if I'm to have any quality of life, instead of staying home in bed for literally months at a time, it's time to seriously consider getting a chair. With at home support, I could at least be clean more regularly, and not feel too dirty to go outside from being unable to shower for weeks. And then I could use my chair to see people more often, just get out more. Enjoy parks, go to my weekly music group for disabled adults again after being too sick to go since before lockdown 1
I just want to live my life again. I'm okay with that looking different. I just want to get clarity on what's happening to my body, what my treatment options are, and if I'm approved for a chair, the support and validation without judgement from doctors etc., to take this new step forward in my life as a chronically sick person
The people in my life who matter will be 100% supportive, and as you can probably glean from my above hopes, I can only really see getting a chair as a freeing action for me. Of course I would love to have no pain and to have energy and be coherent/alert after an 8hr nightly sleep, but I'm so used to years of being sick and adjusting to disabled life that I know I can face whatever lies ahead and be generally happy/okay. It's more the medical gaslighting and blaming I'm dreading should I need to broach this
Idk... thanks for reading. And if anyone with a similar experience has any advice or anything to offer, if you have the spoons to share that wisdom and kindness I would be incredibly grateful, but of course no pressure to respond! 💖
]]>The fact he's said 2 million people in the UK currently being unemployed is a "national scandal and an enormous waste" is in itself disgraceful when an average of one in four people suffer from a significant mental health issue and/or chronic pain!!!
I'm university educated. I have always been academically driven and career-oriented, always wanting to use my position to help others through teaching and vocational work. Further to that, I now need to be able to work so that I can immigrate to my girlfriend's country. I have numerous motivations to work, and skills to do a variety of jobs. I'm at a far greater advantage with my background, connections, and skillset, than many other disabled people in my position. If I had literally any other choice I would not be fucking unemployed! I would LOVE to spend my time bettering the world around me instead of rotting in bed as my colander of a brain interprets information from social media/Netflix then instantly forgets it, if I can comprehend it at all to begin with. But rather than recognise this I bet my last bottom dollar the DWP goons will be citing these very things as reasons to push me harder when they start sniffing around my case
I'm genuinely terrified for what these changes will bring about not only for me, but the millions of people in this country who cannot work. It is going to fucking kill us. The current benefits system as it is has already murdered countless disabled people and they want to make it even more draconian?!
Believe me, Rishi, if I had the capacity to work I would already be long fucking gone from this hellscape you are driving even deeper into the ground, you utter fucking cockwomble
]]>Actually at this point I'm trying not to let my body atrophy any further or a wheelchair could be a real option in my forseeable future. That's not something I want to avoid because my worth is tied up in what mobility aid I need/use, but purely because the more my muscles atrophy, the worse my pain gets. I'd really appreciate less pain!
Also the usage of "crutch" metaphorically in a derogatory manner. It's always irritated me, but the more time passes with me being chipped away by microaggressions to being called outright hateful ableist slurs by strangers on the street, the more it downright angers me. Mobility aids are not a negative thing, they aren't something we're confined to or choose to rely on. They prevent injury and deterioration, not cause it! "Ooh they're using it as a crutch!"/"Careful, you don't want it to become a crutch!" Shut up! My crutches have given me the freedom to attend concerts and weddings and enjoy the outdoors and time with loved ones instead of being permanently confined to my bed, I love my crutches!
I didn't end up sleeping due to pain, and I've got some pretty strong prescribed sleep and pain meds, which unfortunately don't always work when it gets bad enough, so... I'll probably be ranting a lot about ableism and life with chronic illness today. Or whatever irritates me next before I fall asleep. Apologies in advance for the walls of text that will likely get progressively disorganised as the day goes on! I don't operate well on no sleep anymore 🙊
]]>I need a 24hr heart monitor, being referred to cardiology. I actually woke up today having my first good health day in like 3 years. I had energy, low pain, no dizziness. Even had a shower for the hell of it instead of forcing myself through one out of obligation, and enjoyed it, and still felt good after! But then I saw my GP and it turns out my heart is not doing good 😂
I was annoyed by having a good day before my appointment because I was worried that I'd be asymptomatic when being tested for PoTS, but turns out I'm so used to feeling terrible that even when in apparently very not good health I feel amazing. Not sure which of those feels worse 😅
I hadn't had the energy to try and sort out the life insurance thing yet, been very busy and still will be busy for a couple more weeks. I just saw when I went to make this post that that was a month ago so I'm sorry for not updating you all on that front! 😭 I'll need to wait now for my tests to be done before I can try to apply because I need that information before I go any further, since there's no guarantee that PoTS is causing this and it could be something else. Blehh. But if I do find a life insurance company who accepts under 50s with chronic health stuff I'll definitely post that here!
]]>I made my will today, the company I used will post it to me to sign, and then it will be sorted. Next on the agenda is life insurance so I can pay for my funeral, because it's not like I can pay the £4500+ myself for a cardboard box woodland eco burial when I'm on disability benefits!
First place I planned to go with had a quick questionnaire and I was irritated to have been denied, especially without being told why, but at least it wasn't too much time wasted. Next company though? I spent TWO AND A HALF HOURS filling out all of my medical history (realised I have 13 official diagnoses in the process lmaooo) only to be denied after all that work and sharing so much private personal information
I was already exhausted because focusing and typing for that amount of time isn't easy at all with chronic pain & fatigue and brain fog and tremors, and there was no way to save the questionnaire and come back to it later. I really thought that with how much detail the form demanded of me, that it would be seen by an actual person before a decision was made, but no. At least this time I was told why I was rejected, but I feel like if they use an automated system they should tell you when you become ineligible, and end the questionnaire, rather than putting you through the whole ordeal!
Here is why I was rejected:
-Having a PTSD diagnosis
-A non-recent history of suicide/self harm
-A "heart condition" (fast heart rate with no underlying cause)
-TWO slightly elevated blood sugar levels of 4 years apart which resolved themselves, and were both barely out of the "normal" range
-An even less recent history of drugs (one off dose of MDMA over 5 years ago, and medicinal cannabis use, stopped 2 years ago)
Now I'm sure that plenty of people just lie about their drug use on things like this, because 99% of people I've ever met have done at least one drug at least once. But since I'm so significantly unwell, I need to be as honest as possible with my medical and care teams about anything that goes on with my health. So if the insurance company saw in my medical records that I'd done drugs and omitted it in my application, that automatically voids my insurance. They emphasised more than enough that any discrepancy between my self report and medical records would nullify my claim, after all 🙃
Bottom line is, fuck you I guess if you had a rough start in life and had a perfectly natural response to the hell you went through. Fuck you if you tried poppers at 18 and ended up in an ambulance, because that's on your medical notes. If you've been 15 years sober after 20 years at rock bottom. All the hard work you did to heal all that heartache doesn't matter, and you especially don't matter if you're still using!
Addiction is an illness. Disabled/chronically ill people are more likely to have at least one other comorbid condition, usually several. The fact that people are prevented from being able to cover their own funeral costs, especially the people who likely need it the most, all because some company doesn't actually want to pay out, is disgusting. It's disgusting that funerals cost as much as they do, but ultimately that's capitalism working exactly as intended: overcharge for necessities, because people don't have a choice, and you don't even get a break after you're dead!
I need a plan in place for when I die. It'll be a sad enough time for my loved ones as it is, without having to worry about organising and paying for everything. I don't know when I'll go, few of us ever do, but I want to lessen their pain as much as I can by leaving instructions and taking care of the finances by myself. I should be able to do that. So long as death is so expensive, everyone should have that option
I'm going to trawl the web again tomorrow. If I find a decent company who doesn't (completely) penalise you for pre-existing conditions or your history, I'll post it here 💖
]]>I posted a little while ago saying I'm a new person to the Raddle community and I have my own maladies going on. One thing I'm curious about is if people know resources for helping people move or escape bad situations? I live in one that just doesn't help my health at all, and the longer I stay here, the worse it's getting.
People have tried fixing small things here or there but there are fundamental problems with other people in the house that cause them to be unable to do things like the dishes and we get bugs and it sets off anxiety or they don't ake out the trash and same thing.
So, in the interest of getting the hell out of here, anyone have resources for people with disabilities that might need help? Like someone to drive (for pay of course) or lift? Or anything? I'm really lost because I could do this all myself before and I really can't any more. So, any help would be appreciated.
Thank you.
]]>Anyone else knows that feeling? Any tips on how to deal with it?
]]>I've been struggling to write this for a while. After the exodus from Reddit, I started really hitting Raddle hard with reading and studied stuff I found here, and even adjusted some of my views. This place seems great, but, I'm not sure where to go for advice, as I've never even used Reddit for that.
So.
Hi. I'm Cadence, I'm a bird (Caw!), and I'm 34. I'm autistic, have ADHD, and a bunch of pain that we still don't have a good answer for (just had some tests and nothing came back bad, the doctors are trying but they are very ineffective),. I have come here because I would like to request advice.
I live in a house with multiple people. As one of (there's another) the people in this house that has disabilities, I've found myself really at ends with other people. I can't go outside in the heat or I get heat stroke if it's too long, and this lead to an argument over mowing the lawn. With the pain I'm in, I didn't even think of doing that. Still, I do take care of things inside, I tidy up, I mop/vacuum, and I try to stay on top of others to do their chores.
One thing that constantly gets to me is the fact that I'm almost always under some sort of pressure for myself. Like, I'll be cleaning and there will be anxiety from other tasks that need to be done. Or, when I'm sitting by myself, the sounds from outside (even with a white noise machine) end up setting me off and making me want to cry.
I feel like over the years I've gotten much more.. Hm. Unable? When I was a teenager and a 20-something, I didn't have these issues. Overstim was always a thing and I would be grumpy, but never this bad. I've had days where I don't get out of bed or go downstairs because there's too much noise or the world is too bright or something else.
I'm not sure what I'm even asking for any more, I just need a place to vent and ask for help, but I don't feel like I'm on top of things like I used to be. How are folks managing as they get older? It feels like I can't.
Oh, and hi. Nice to meet you all, and hope I don't upset anyone with this.
]]>I hate this
I hate being this sick and I hate having to force myself to jump through hoops to access "care" in spite of agony and extreme fatigue and dizziness
I just want to sleep.
]]>https://en.wikipedia.org/wiki/Disability_Pride_Month#Disability_Pride_Flag
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