Stay sick, and you’re not trying hard enough.
Make any improvement, and you were faking all along.
Share your reality, and you’re negative and seeking attention.
Keep the struggle to yourself, and you obviously aren’t that sick.
My friends made me confront the idea of using a mobility aid for my chronic leg/ankle pain when I need to walk places today. I don’t know how I feel about this or why the idea of a cane (or similar) makes me balk. I know young people that use them and I know there isn’t anything wrong with being seen as disabled-that’s why I run this blog and I’m an advocate for disabilities but..I guess I’m used to my own disabilities being invisible?
I’ve had to confront the fact that this isn’t reality anymore for me and it’s getting worse (which is why I’m finally trying to figure out what is causing it…better late than never?) which might also mean I might benefit from something like this.
I advocate for others to be confident but I have a harder time for myself, I guess.
Can anyone tell me what tipped the point for them to start using their mobility aid? What made it easier to come to terms with it? What are some things I should keep in mind? Just..anything. I know I need to seriously start thinking about this.
My order of operations was a little unusual because I started with a walker chair and only recently got a cane. I got the chair first because my POTS makes me get lightheaded if I stand around for long periods, so going on extended shopping trips would have me sitting on the floor at various points. I felt a little more comfortable admitting to myself that I needed that because I'd seen fellow spoonies talking about them on tumblr and POTS is one of the conditions I actually have a diagnosis for, so I felt like I could hold my ground there if challenged.
I have chronic pain from a few conditions, but mostly joint pain from Ehlers-Danlos Syndrome. I've known the walker helped with my pain as well as the lightheadedness the whole time I've had it, but I always thought of it as a way to manage existing pain rather than a way to prevent it. The last couple months the pain in my foot and leg has followed any regular use and I've taken to using my walker whenever I go out. The change dramatically helped my pain, and that was enough to push me over the edge to find a cane. I can't use my walker to get around my apartment except on days when I can barely move, because otherwise it's just too bulky to be convenient.
It's taken some getting used to, but I've now successfully used it on a couple trips out of the house and I'm working on using it more consistently indoors.
Tips: 1: experiment with the height to make sure you have it the way that's comfortable for you. Sometimes the height that puts the handle exactly where it ought to be for your hand is in between the two closest available height settings. 2: as someone else replied before, the derby handles seem to be designed to have the long end facing forward so that you lean down through your wrist onto the part of the handle directly above the stick. 3: mittens and gloves are now year round friends if it rains where you live. Keep them by the door, in your car or bag, somewhere you can get them without having to think about it. 4: it's worthwhile to look up stretches to relieve cramping in hands and wrists specifically, and it's all the more important to do regular neck and posture stretches now that your body is adjusting to new weight distribution while it moves. 5: find a lotion you like for your hands since it's hard work for them to becoming weight bearing.
Good for you for recognizing your needs and making sure they're met! It's hard and I'm proud of you!
this book is worth more than a dozen restaurants that grow their own microgreens on the roof
It costs around $16 (US), and has some good reviews! Some web links:
Forced prioritization: I will only have the energy to shower once today. Do I just wash my face and do my best to freshen up now so that I can shower when I get home from running errands, or do I shower now to minimize the risk of being smelly around strangers, which will mean staying covered in sweat and sunscreen for the rest of my night at home? There are no right answers and I'm frustrated and tired just having to choose from these options. It's a choice I have to make all the time, and it's exceptionally tedious.
Me: I get sick when I get exercise/go places/stand up/eat.
Doctor: hmm… Don’t do those things then :)
Me: …
Doctor: Also you would feel better if you got out more.
Me: ???
Doctor: And get more exercise.
I had to use my walker chair all day today, indoors and out (usually I can handle the short stretches of standing and walking in my apartment), and I'm so glad I have it. Between my walker and help from my wife, I was able to eat, bathe, prepare myself a meal, go for a short walk, and water my patio garden.
So hooray for mobility aids! I still have moments where I feel weirdly guilty, like I'm faking it because I don't need it all the time, but I'm so glad to have it for days like today.
I think “Congratulations on finally getting your diagnosis” cakes need to be a thing.
I bet you all thought I was joking…
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I never joke about cake.
My OP is suddenly getting a shit-ton of reblogs and I’ve been sitting here all day thinking “you guise are all missing the best part!”
Like, yeah. Diagnosis cakes should be a thing. So goddamnit I made it a thing for myself. You can too.
You deserve a cake.
When my neurologist figures out wtf is going on up there I'm definitely getting a cake.
Idk which chronic problem is making my body suffer today, but I'd like it to stop please.
Hey if there's anyone out there who has seizures or other neurological disorders and has time to talk to me sometime I'd really appreciate it.
My neurologist said my as yet idiopathic condition isn't seizures, but carbamazepine (an anticonvulsant) keeps it in check. That would have been basically the end of it, but I just found out that buspirone (the only anxiety medication that helps me without serious side effects) renders carbamazepine pretty much useless.
My disorder originally manifested as tingling and weakness, sort of a pins and needles feeling, that was focused in my right arm. The duration varied but it usually lasted less than a minute. These episodes were often foreshadowed by sudden loss of coordination, like dropping things. Since then the sensation has become less prickly but more widespread, often affecting my entire right side, sometimes my left arm, and on a few occasions my whole body. When it happens it usually comes in multiple waves in one day, and it's preceded, followed by, or bookended by a headache and feeling of confusion. Today the confusion came with intense jamais vu, scattered thoughts, and a loss of vocabulary. Sometimes, as today, I have more chronic pain than on an average day when these episodes are happening. Today I also had a spell of intense crying seemingly without a cause; I have depression and being sick is frustrating, but the crying out of the blue felt weird.
This has been going on for a little over 10 years now. I've also been diagnosed with POTS dysautonomia (I've had symptoms for about 15 years), and I'm three years out from cancer treatment (T2 squamous cell carcinoma on the side of my tongue; surgery, radiation, and chemo). I have PTSD and chronic pain due to cancer treatment, and joint pain that I've had since before my cancer has worsened.
I don't know if all or any of this is relevant, but if it sounds familiar and you have an idea of what a likely diagnosis is or if you're willing to commiserate about how much neurological problems suck I'd appreciate hearing from you. Thank you!
no more spoons, only knives left 🌌🐢
Having more and more days like this one!
A shirt for today (and every day)…
Gentle reminder that the best kind of witchcraft is the type that keeps you as healthy as possible and doesn’t require all of your energy.
Shamelessly sitting on the floor wherever you go bc fuck finding seating
someone: you forgot to eat? how?? aren’t you starving?
me: I don’t know I can’t feel anything
Some eaiser variations of push ups to help you build the strength to do a traditional one!
I don’t generally reblog ‘fitness’ stuff but gaddamn could I use some more arm strength.
Push-ups are my worst nightmare. I can only do 44 before I pass out on the floor.
“I can only do 44” hahaha omg I can’t even do one.
yes good
I was always frustrated how my P.E. teachers wanted all of us to go “all-or-none” and basically hurt ourselves without letting us build up from square-one like in the first gif. Then they’d fuckin yell at us for not doing it right >:|
Knee-pushups is not square-one.
When I got my first personal trainer, she had me doing push ups almost standing upright in the weight lifting bars so that I could do 15 reps and 3 sets of them. It’s more about the technique of the push up, and if you’re pushing too much weight, you can’t exersize the correct muscles within their tolerances. This post is pretty important tto know cause of that.
