So nearly a year ago I went from “probably normal for hEDS” fatigue, where I was generally ok so long as I didn’t do much but I got fatigued much more easily than a regular person if I did any kind of exertion, to “what the actual fuck” ‘fatigue’ where I felt like I was dying.
I was on stimulants at the time, still am, and I still noticed the jump. My stimulants went from possibly helping my ADHD, to not helping at all, plus a heaping dose of exhaustion during the day.
My night time sleep, which hasn’t been great in recent years, went to utter shit. I can barely visit my partner because my fractured solo sleep can’t handle being next to someone, my constant coming up to wakefulness or near wakefulness means I’m always aware through the night to detect “different bed” “person next to me” “covers in wrong place” etc and it drags me further out of sleep.
I recently switched stims, which meant starting from a baby dose, and oh God. I felt like death. In the mornings I have a period of grace after I wake up, but then the tiredness hits me, and I have to go back to bed until the stims kick in. On the baby dose that didn’t happen, so I had to spend the whole day vacantly staring at a screen, unable to function, except when I laid down for a few hours and got some relief.
I’m begging my GP for a sleep specialist referral, but she needs a sleepiness questionnaire done, which means I need to come off my stims (and probably my naproxen, which affects my sleep) for at least a few days to get an accurate feel for my real symptoms. I am not looking forward to it at all.
I thought this was CFS, but after a long time of researching, that seems wrong. I looked into idiopathic hypersomnia, but that doesn’t seem to quite fit. I’m thinking narcolepsy type 2? But I guess we’ll see :/
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I’m not vagueblogging anyone, but I think it really needs to be said that healthy, abled people literally cannot understand the level of fatigue that chronically ill people have to live with.
I know this because my mom has had Chronic Fatigue Syndrome essentially my entire life, but I couldn’t understand her fatigue until I got sick myself.
I know this twice over because when I got extremely ill with Lyme Disease, she couldn’t understand my fatigue. Twenty years of CFS and she would chastise me for not doing some things she thought I should be doing, even when I said I was too tired. A few years later, her condition worsened and she apologized to me, saying that it was only then that she got it.
So please, don’t think that the tiredness you’ve dealt with is comparable to what a chronically ill person has to fight, every minute of every day, to try and scrape by an existence. In fact, don’t even try to understand, because you can’t.
Just believe them when they tell you how bad their fatigue is.
So I’ve been trying low dose (very low dose) CBD for the past couple of days, and I have to say I wasn’t expecting anything. It’s really low dose, as I wanted to start super small and microdose my way to victory, and also I tend not to react to many things.
So, it’s not super surprising as I’m a new user, but the first thing I experienced from my first few doses was a sensation of heaviness.
But the next thing I experienced was amazing. My partner said something to me that should have triggered my BPD, hardcore, about their new date and suddenly not being around to talk to me that evening. Like my stomach should just have dropped out of me. I flexed my coping mechanisms, I trotted out careful responses, and then waited for the sensations inside me. And they didn’t... come...
I waited and waited, and I prodded myself like what gives? Look at what your partner just said to you! You should be suffering! But nothing happened. I was a bit bummed but like totally normal levels of bummed.
Similar things happened this morning. I was looking at our shared calendars, and things on there should have given me little flutters of fear and anxiety, all that horrible BPD mess that you get when you feel like you’re being abandoned even when your brain hasn’t caught up. And nothing! Nothing!!!
Am I actually looking at a future without BPD scraping away my insides???
Also, I have felt like it isn’t working for my pain. I’m still sore, my joints, they hate me.
And then I missed this afternoon’s dose, for various reasons. And oh God. It was helping my pain.
Suddenly all my body was aching. And my head hurt bad. When I took my normal dose several hours later, the aches subsided. My joints still hate me but the full body pains have settled down, my head is down to a manageable level.
Needless to say, I am very hype to see where this goes. I’m only on like, 3mg. 3mg! The internet told me to start on 10-15mg! Imagine how much it’ll be doing when, if, I get there!
That said this weekend I have to go without my naproxen, in a scenario that tends to cause me extra pain (sitting and lying on my partner’s bed all day and night), so you better believe I’m still packing a toiletries bag full of ibuprofen, paracetamol, and cocodamol of various strengths. CBD or no CBD. This bitch is prepared.
Yoooooooo. (Quickie Argon 2, Alber E Motion M25 wheels, Jay Xtreme Active cushion.)
So I’ve actually had it for nearly a week now. It’s just that I’ve been very exhausted physically and mentally by my first trip out in it, and been recovering from that.
So, I was a complete noob. Within hours of it arriving (this is my first chair, to be clear), I went on a trip into town in it. First I forgot to put my anti-tips back on and went back and smacked my head, then I had the power on too low for the first hill right outside my house and exhausted myself straight away, I got stuck at so many kerbs, and I found hills that the powered wheels couldn’t handle period and had to get out and push the whole thing. It was a fun time.
That night I could barely sleep I was in so much pain. I think only the exhaustion got me through the night.
But! I’ve been using the manual wheels to learn how to balance with the chair. And I’m going to swap back to the powered wheels and see if I can transfer that knowledge to doing wheelies with power. Which should mean I’m less afraid and less likely to drain myself physically and emotionally getting stuck all the time.
I have a conference the next city over this weekend. So I’m going to rest up the last of this exhaustion, keep practising my wheelies and my control, and it should go a lot better!
The wheels have a lot of power in them, so long as the hill isn’t too steep. The steeper it gets the more you have to work. I would really like the cruise control option honestly. And there’s a limit to how steep a hill they can power you up at all I think. I might actually have to get a taxi home from the train station in my town, but thankfully that’s not a long journey so it shouldn’t cost too much and there’s usually taxis sitting there. The problem will be getting the wheels on and off quickly. I need to practice that, right now I have to do it at an angle or I can’t do it at all.
If you’re not going up a hill, these things are amazing. I wondered multiple times if I had accidentally bought the cruise control option. They just keep on rollin’. And if there’s any hint of a downhill gradient, even one you can’t see, they’ll just roll forever. That takes so much strain off of you, letting you save yourself for those steeper hills I mentioned.
The fact that they can’t go up very steep inclines is a serious problem though. It’s a problem that’s detailed openly in their manual and I believe in their brochure, but it’s an issue and if you have anything past their limits around you, you should be aware of that.
Don’t get me wrong, I’ll keep trying to find their limits. Technically if I could push up something manually I see no reason why I shouldn’t be able to go up it with the wheels. But I think the motor is trying to help, failing, and rolling back instead, which is counteracting any attempts I’m making to do the hill myself.
The cushion is great. I have sensory sensitivities that cause me a lot of pain on the wrong surface, and I went for the Xtreme Active with large fluid pad and it has worked out really well. It’s comfortable and there’s no pain. The backrest is a standard fabric backrest and I sometimes get back pain, but I’m hoping I adapt to it as I don’t really want to add the weight of a Jay back.
I’ve had to order a new calf strap because the standard one heavily abrades my leggings. Something to be aware of if you wear those. I’ve got reflective stickers on the front back and sides, but they’re black in daylight which is awesome.
I’ve also got a huge underneath bag, and a small hanging back bag, from this store. They’re not cheap but they’re super well made, like they look and feel professional and very sturdy. They have a bunch of sizes, and if they don’t do what you need they have a custom size option. The underneath bag (the XL option I think) is technically capable of fitting four Magic the Gathering double sleeved commander decks in cases, a box of sleeves, a bag of dice, three extra small card containers, a bike pump, and room to spare, plus the front pocket. But I don’t like to weigh it down that much just in case, so no more than three decks go in at a time.
Feel free to ask me any questions! I did not go through WCS for this chair though so I can’t help with that unfortunately.
Me: I don't really want to take opiates because they can mess with your digestion and I have IBS already
My GP: It's only a baby dose you'll be fine.
My body: Hold my beer.
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So I have joint hypermobility/hypermobility spectrum disorder/ehlers danlos syndrome/something (Dx’d hypermobile and in pain but the waiting list is loooong for the actual conditions). I am also autistic and have ADHD.
I’ve just bought a weighted blanket and oh my God it feels good. It feels so good.
Except that I like to get to sleep lying on my side, and when I do that plus blanket, the extra weight seems to do something to aggravate my bad hip, which is my lower hip when I’m lying on that side.
I already have a nice new bed and mattress. It’s still being paid off as a matter of fact. It’s medium firm I think, with like a gazillion springs, and an “iGel” topper as part of the mattress. I’ve loved it so far, until like, right now.
Any recommendations on how to win this battle? I was hoping the blanket would really help me with the sleep issues I have. I’m a very light sleeper, which is a pain in the butt, particularly when my partner visits. I’m loathe to just dump it as an idea, but I guess I could? Or I could chug painkillers before bed and hope they get me through the worst of the night (getting to sleep)? Or is there a mattress anyone with hip pain really swears by? Or anything else?
I have my suspicions that the blanket is pushing my hip through the topper and onto the springs, where the resistance is causing pain. If so that's going to be an expensive problem to resolve :/ Happy to take mattress recommendations (or any other recommendations) anyway.
In the US, a person’s wheelchair is viewed legally as an extension of their body.
1. If you touch someone’s wheelchair without their consent, that is Assault. In some states, this is automatically Aggravated Assault because the assault has been committed against a disabled person.
2. If you start pushing a person’s wheelchair without their explicit consent, that is Abduction.
3. If you grab a someone’s moving wheelchair to stop it, lean on their wheelchair making it jolt or tilt, climb over their wheelchair to get past it, or move their wheelchair because you think it’s in your way, you are risking injury to an obviously medically fragile person and that is Reckless Endangerment.
4. If you grab or hold onto a wheelchair, preventing the person from leaving, that is Unlawful Detention or Unlawful Restraint.
This is not a moral philosophy or an opinion. These are legal definitions. If you do any of these things, you are committing a crime for which you can be prosecuted and do jail time, and you will have a criminal record which will follow you for the rest of your life.
These same laws are applied in the same way to any mobility device including canes, walkers, and scooters. If you kick someone’s cane, grab their walker, pull on the handlebars of their scooter or in any other way touch of manhandle someone’s mobility device you are committing a crime for which you can be prosecuted and go to jail.
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CW: TMI/non-detailed discussion of unsanitary/defecation
There have been a few “if you don’t have a [large] mobility aid you need to not use the disability stall, EVER!” posts in the disability tags recently and it’s getting me down. Not only do they not include people with other physical disabilities, some of them have explicitly stated that people with other physical disabilities are excluded.
I have IBS and more than once using a disabled toilet has stopped me quite literally having an accident in the street. I use regular stalls whenever I can, but there are times when a disabled stall or bathroom has really saved the day.
These types of posts say to me that these people would rather I shit myself than make someone using a wheelchair or walker wait a minute or two for the bathroom.
As if abled people don’t cause us enough stress, we have to have this infighting as well. It’s super great.
I made a discord server for those with EDS, Marfans, or Joint Hypermobility Syndrome because while I’m part of a few very good online disability communities - I wanted something for us specifically.
There are a few rules:
• You do not need a concrete diagnosis to join this server, suspecting you have one of these is enough
• Adults (18+) only. While this is a SFW server, I do not like modding minors
• No bigotry of any kind
Just click the title to join. When you join you’ll only see the “Start Here” category but make an intro and an admin will accept you into the rest of the server!
My shoulder: -pops out repeatedly-
Their hands: -pop repeatedly-
Them: Wait, was that you or me that popped this time?
Me: The couple that subluxes together, stays together!
Chronic fatigue is awful, its sleeping for hours and hours and never feeling well rested, its eating and drinking all the water in the world and still having no energy its literally trying to function when your human battery is always at 0%
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When you get a like on a dating site and your partner asks you their name because they’ve been chatting to someone similar on that site and they go “wait” and you go “wait” and at the same time you show your devices to each other.
