#chronic fatigue
I recently applied to the Department for Working Pensions (DWP) for Personal Independence Paymetns (PIP) and quite honestly regret the whole thing!
I haven’t yet been told the decision on whether or not I will in fact be awarded these payments, but my gut feeling is that I won’t. As my assessor left she said: “I hope things stay as well as they are now for you”. To me, this indicates she thinks I’m fine…?
The whole process has been taxing and has meant that I feel as though I’m a lazy, unhelpful person that lets my mother do everything for me. I don’t actually believe this, but I’ve been made to feel this way several times. Having to relive my slow loss of personal dignity and every embarrassing moment has been horrible too! You’re also made to feel like you’re lying, even though you know you aren’t; I would much rather be able to work full time and support myself, but that doesn’t matter to them.
Don’t even get me started on the form filling out, there were so many pages and they ask you the exact same things in the meeting anyway…
Anyway, cross your fingers for me!
Going back to work has been…um…interesting. Everyone has been so supportive and helpful, but I am just sooo shattered all of the time. I have just finished 3 days with a shift on each and I feel ready to sleep for a week. I’ve got work tomorrow, but then 3 days off thank goodness!
I suffered from fatigue before Lemtrada, but it does seem to have become worse. I was pretty sure this was going to happen, but I was hoping I’d break the rule.
I am managing to work the shifts with little to no issue and am not making any mistakes that I’m aware of, however after the shifts is another matter: I become pretty useless physically and have cognitive issues too (remembering words, concentrating, understanding the simplest of things, etc.).
All of this is expected, but I’m hoping it will improve in the not too distant future!
Thursday just gone was my first day back at work. It was only a 4.5 hours shift and a very quiet one at that, but once I was home my back and legs decided they’d had enough. So I ended up spending the rest of the day in bed, in discomfort. The shift itself was fine though; I was a little more tired than I have been recently, but I was expecting that.
My second day back (a 4 hour shit) was a little more interesting: I spent the last hour or so with a full body tremor. It was only low level, so no one really noticed, but it wasn’t all that fun. I also had to use the inhaler that my neuro team gave me at the start of my treatment a few times as my chest was feeling really tight. I also felt more drained than my first day back, but then that makes sense seeing as how I’d worked the day before too. The first half hour after work I was fine, although the tremor continued, but after that my left leg became oddly painful (possibly the bone pain I was warned about?). That continued until I took some paracetamol and had a rest (not sure which helped more to be honest).
All in all it wasn’t as bad as I’d expected but I did come away from work smelling of anti-bac!
(I work as a sales assistant by the way.)
I’ve been to the hospital many times, and I’ve had bad nurses and doctors and good nurses and doctors. My recent overnight stint had pretty decent doctors and nurses. As patients we will certainly remember the more unpleasant experiences and be rightly angry about them.
However it’s important to remember that not all nurses are the bully from school. Many are genuinely nice and caring people, like my aunt who was a maternity ward nurse for many years. Many of these people are put under pressure of a for-profit medical system that forces more patients on less nurses. We should be outraged at genuinely cruel medical professionals, but if we want to be acknowledged as human too, we should do the same for them and advocate for better working conditions for nurses.
Yeah they’re supposed to be professional and not be rude but is anyone truly perfect at the end of a double shift with double the work? And some nurses are disabled too. I’m not against venting against terrible nurses but when we act like the problem is just the wrong people going into nursing we ignore a large problem about the state of nursing jobs and overworked underpaid caregivers that ultimately hurts and potentially kills us. I personally don’t want to do that.
I had some GREAT nurses when I was in for my colonoscopy. After, in recovery, my nurse went so far as to spend 10 minutes using alcohol wipes to gently remove my IV bandage, because I told her it rips my skin because of my fragile EDS skin. Did she have to do that? No. Did she have other stuff to do? Yes. Did I really appreciate it? SO MUCH YES
If you would like to hear my diagnosis story, please watch my video, but allow me to give you a brief explanation as to why I am trying to raise money. I have been diagnosed with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, chronic migraines, sleep apnea, Raynaud’s, chronic fatigue, and chronic pain, along with a yet to be fully diagnosed GI problem (basically I can’t eat anything without severe pain, bloating, and running to the bathroom every 10 minutes.)
My mom has been doing everything she can to take care of me, but the unpaid bills are piling up, and I am now needing a power assisted wheelchair, a new set of ring splints, and I am trying to get a service dog for mobility assistance and medical alert. Being that we are already in debt from medical bills, our only option is to try crowdfunding.
I would greatly appreciate it if you would share my story. I am trying my hardest to keep fighting this condition, but I need some help to get some very important aids that will greatly improve my quality of life, and my ability to participate in life again.
What the literal fuck is this nonsense? Who let this bitch practice medicine? Did anyone think to suggest putting some fucking medical evidence in this piece?
Thoughts on power chairs vs. manual chairs with power assist devices? I’m debating between them, but most of the sites don’t seem to have customer reviews which doesn’t help.
It’s 4am and I’m up because my stomach is not happy. I don’t know how I’m supposed to wait until December for my colonoscopy when every time I eat I get cramping and diarrhea. My health is still going downhill very quickly, and my meds don’t seem to be helping much. I’m going to email my EDS doctor and let him know what’s going on, because at this point. I feel like we need to re-evaluate what we’re doing to treat my condition.
imagine if shoes cost $2,000 a pair for ones that do not actively hurt you and are designed to be walked on for more than just a few steps. $2,000 at minimum for the luxury of being able to move around without being injured. that is what wheelchair pricing is like
While 2k is the average, I found a $200 one. Not that I’ve spent that on sneakers, and I used to go for nice Nikes too. And this doesn’t add in shipping and customization. But maybe your physical therapist could do the customization adjustments for you.
The problem I have here is that, yes, manual wheelchairs can be found relatively inexpensively. However, powered, or power assisted chairs are INSANELY expensive. I have Ehlers Danlos Syndrome, and as a result, both of my shoulders sit pretty permanently out of socket. I can’t safely use a manual wheelchair without causing myself more irreparable damage, but insurance won’t cover a power chair because I can walk, although it is painful and I cannot walk for very long.
Medical equipment should be affordable! It doesn’t cost $3000+ to manufacture a power chair, and no one can convince me of that. And while we’re at it, give ambulatory people power chairs! A wheelchair would help me so much, I would be able to go out and actually enjoy going places instead of turning down friends because of the inevitable pain I’ll be in if I say yes. I’m so tired of saying no to my sisters when they have plays, concerts, etc, because I can’t spend 4 days recovering.
Ahem. Sorry. Rant over.
Sup zebras, I’m starting an EDS YouTube channel. It’s called Braced For Impact (because this bitch is buying new braces ever other week it seems). No videos yet, but I just got my new phone, so let the filming commence!!!
My mom is suddenly mad about “having” to go to my GI appointment tomorrow? She always wants to come to my appointments, plus it’s better to have someone with you, especially being a young woman. And this is the first time ever going to this doctor/ practice.
Also, she wants to make me take an uber to the doctor so she can go out with her boyfriend. How fucking childish.
Calling all fellow Zebras…
Yesterday I was diagnosed with EDS type 3, and during that appointment my doctor said that it is likely I will develop further complications within 10 years. Currently I have chronic pain (joint and nerve), sublux/dislocations, migraines, sleep apnea, heat intolerance, intermitant gastric upset, and soft delicate skin, but no POTS or Gastroparesis, ect. Try as I may, I have found nothing on the progression of this condition, and I was hoping the vast spoonie community might have some insights.
This condition has already taken my independence, my college degree, and my active, pain free life from me, and I want to have a heads up if I’m going to lose more. The hope is obviously that I will not get worse, and that meds will help my pain so I can ditch my cane and get back to a semi normal life, but I’m a little too cynical for that right now.
Bringing this back, since I’ve been diagnosed with POTS, am looking for a GI because of worsening digestive problems and weight issues, and am getting a cervical and thoracic MRI tomorrow to look for structural issues that may be causing worsening migraines, skull pressure, and drooping during migraines. My tremors are also worse, and I may have periarticular osteoporosis (whatever the fuck that is, can someone enlighten me? My shit ass rheumatologist lied to me, told me I was fine, and then a year later I found out that she had lied and discharged me)
In last 21hrs, I’ve slept 15hrs. Had a chaotic, exhausting but ultimately v nice weekend but damn, apparently I needed rest. Feeling pretty good now.
As a disabled person, I’m telling you right now:
Act disabled.
Stop telling yourself you’re acting more disabled than you are.
Crawl to clean your room, use a wheelchair when you’re “only” at level 3 pain, wear all the wraps and ice packs
Allow yourself to act disabled and you’ll see that it helps you a whole lot when you allow yourself to use any and all tools
Clean in a way that makes you feel the comfort of dirty.
When you live in constant mess, it can actually feel bad or stressful to live without mess. So try to clean in a way that makes you feel comfortable.
Examples:
- setting out lots of decoration that can be easily moved anywhere
- take off the door to your closet, or the cupboard doors so you can see the dishes
- have your clothes where you can see them
- don’t hide your trash can
- have piles or boxes to hold things rather than hiding them in the furthest corner from your mind and body
Feel free to add more
