#spoonieblogging

[mamas-still-doing-it-all]

Today I woke up, and when I stood I could barely put any weight on my legs... I must have overdone it yesterday. I went to work today, and had to smile when I wanted to grimace and laugh when I wanted to cry. Every step I took was excruciating but I worked my 8 hour day with no pain meds since I can’t get them any more thanks to the crazy laws ... and I got through the day. Somehow.

Mamas-still-doing-it-all

[apxlllo]

chronic pain makes you feel like this

[apxlllo]

Happy Disability Pride month y'all, just a reminder to you ableds that the questions "so what's ACTUALLY wrong with you" or "do you really need that" cost $5 each and anyone who doesn't pay up gets a cane to the face

[apxlllo]

Uh oh Lads, chronic illness rant incoming

Apparently there's a new drug being trialled to help with chronic fatigue and muscle weakness and as someone with ME/CFS [Myalgic Encephalomyelitis/Encephalopathy / Chronic Fatigue Syndrome] I should be happy about that but honestly? I'm more angry than anything

The fact this treatment is being trialled is great and I really do hope that it works and helps a lot of people. The thing I'm pissed about is the fact that it's taken so long for this drug to be made and that people with ME/CFS are being forgotten again

As far as I can tell this drug is being aimed at people with long covid - and before I go on, I wanna make it perfectly clear that I am NOT angry at people w LC nor am I blaming them for ME/CFS being ignored. My anger is 100% aimed at the medical researchers and medical professionals who've dismissed ME/CFS patients time and time again and acted as if it's not real or as if it's all psychological and not worthy of actual treatment. They're the reason there's fuck all research or treatment for this condition, people with long covid aren't the enemy here

I've had ME/CFS for 8 years now and I know people who've had it for far far longer, people who've been housebound or bedbound for fucking decades with this illness, and yet medical professionals don't give a shit! People see it as "just being tired!" People call it fucking "yuppie flu!" People (*cough cough* Ricky Gervais *cough cough*) make jokes that it's a fake illness used as an excuse to get time off work! This condition has caused me to drop out of university and I use a wheelchair from how bad my symptoms get, but people act as if this illness is a fucking joke

For the longest time the only recommended treatment was to exercise more, which was proven to make the condition worse - it's only in the past few MONTHS that GET (graded exercise therapy) has been removed as a recommended treatment, and the only other treatment that's still recommended is cognitive behavioural therapy. That's it.

So after all these years of people suffering and campaigning for better treatment and recognition, there's finally a drug that can help with our condition... and it's not even for us. Maybe in the future it might be used as a treatment for ME/CFS but I'm still angry at the fact we're an afterthought. We deserve better

Also to any healthy/able bodied people reading this: keep any clown comments to yourself, unless you're gonna be supportive I don't wanna fucking hear it

[apxlllo]

Hi! Sorry if I'm bothering you but do you have any tips for starting to use a cane? I'm likely going to get one soon but I'm not really sure how to properly use one, if that makes sense

Hey anon, you're not bothering me at all! That's great that you're getting a cane, I hope it helps!

This might end up pretty long so sorry in advance

When buying one, make sure you get one that's the right size - I'd definitely recommend an adjustable one rather than a traditional wooden walking stick, especially as an adjustable one should have a more comfortable handle. If you google the right cane size for your height you should be able to find the exact size you need but as a general rule, make sure it lines up with your wrist like in this diagram

You want it to be the right height or it's not going to be comfortable and you'll end up hurting yourself.

Personally I use a swan necked cane as I prefer them (I find them to be more stable) but you might prefer a straight one. Something really important is to look at the handle - you're gonna be holding it for an extended period of time so you wanna make sure it's comfortable. I have canes with foam and gel handles because they're comfy, but just a warning that YOUR HANDS WILL GET SWEATY when it's hot and that sweat is gonna get on the handle so be aware of that. Sweat on a gel handle is not fun lol

Here are some examples of handles! I'd recommend gel and foam bc I get chronic pain in my hands so they're the comfiest for me but lots of people use derby handles (the black bottom right) so don't think they're awful or anything, they're just harder than the others

A folding cane might be a good idea if you're only going to need it sometimes bc you can just shove it in your bag, I have one I take w me sometimes. I think they can feel a little less stable but that might just be me, they're still useful anyway

The bottom of a cane is called a ferrule and you'll need to replace them when they lose their grip, if you're ordering online then the website should have ferrules too, I'd recommend buying a few so you don't have to worry about not having one when you need it

I'd also recommend getting a strap for the handle if the cane doesn't already have one because you WILL end up dropping it otherwise, I drop mine all the damn time

When it comes to actually using one, I use one on my right side w my right hand as my left side is weaker. In general, use your cane on your stronger side! Some people differentiate between what side they use their cane on depending on their pain but this depends entirely on your condition and whatever is most helpful for the day.

To walk with one, practice at home first, it'll probably feel weird at first but you'll quickly get used to it. Put your cane out at the same time as your opposite leg - so I put my cane down w my right hand at the same time I put my left leg out, then my right leg goes out, then repeat

DR HOUSE USES HIS CANE WRONG so don't be like Dr House

You can find videos on youtube for how to walk with a cane, like this one for example! This video is really useful, definitely watch it

When you start using one, people are probably gonna stare. It sucks but most of the time it's not malicious, after a while you don't really notice it. People might also assume you're completely helpless and try to "help" by being an inconvenience (like grabbing your cane, holding the door open when you don't need them to, insisting on grabbing something you're trying to hold, that sort of thing) - don't be afraid to tell them to back off. It's frustrating as hell but hopefully it shouldn't happen too frequently.

You're also probably gonna get people asking what's wrong with you or asking if you've injured your leg or something. Again, don't be afraid to tell them it's none of their business - strangers aren't entitled to your medical history. If anyone gives you shit for it then they're an ableist fuckhead and I'm wishing them a very Die

Your wrist/elbow/arm in general might ache when you first start using it, or your hand might cramp up, so be prepared for that. I use magnesium oil if my arm is aching a lot and I take breaks too, my arm doesn't really ache as much anymore after using my cane for a few years though.

Uuuh that's all I can think of off the top of my head. Oh, decorating your cane is super fun too, stickers and washi tape are GREAT. It's your cane and you can have fun with it, make it as pretty or punk as you want.

Good luck with the cane anon!! I hope this helps - if you have any other questions feel free to ask!

[astrangeenchantedboy]

no one:

my fibro after i've managed six hours of sleep: we're gonna wake up now :)) and get out of bed :)) or else kiss working knees goodbye for the day :)))

[apxlllo]

it's real Hating Doctors Hours lads

[apxlllo]

ugh, low spoon day today lads, I had so much I wanna do but never mind I guess! I'm stuck in bed instead, that's equally fun and not at all soul crushing