I can’t tell you whether you’re physically disabled or if you “qualify” for cripple punk, but lots of people with chronic illnesses consider themselves physically disabled! I’m one of those people, and I’m all about cripple punk.
OK, what was major for ME to realise was that disability isn’t an all-in thing. It’s not “you’re either disabled or you aren’t”. With chronic illnesses like SEID and fibro, your level of ability is going to fluctuate. So some days you can’t reach high to get a thing down from the shelf, you need a cane for stability, you can’t walk 100m, those days you are disabled. Other days you might be a lot more physically able. I realised that the whole “No, you’re disabled or you’re not! You can’t have off days!” refrain my mind kept repeating was an aspect of internalised ableism.
I get a lot of asks about from undiagnosed chronically ill people about how to get a diagnosis and how to talk to their doctor. These are some articles/resources I’ve found, and I’ll be adding more as I find them. Feel free to add your own! ♥
it’s sort of ironic that the original article on spoon theory costs so many spoons to read, so i decided to write a brief summary for people who need it
spoon theory is an analogy
in it, spoons = energy
you get [x] number of spoons a day ([x] amount of energy), & doing things costs [x] number of spoons ([x] amount of energy)
for example, you get 10 spoons today; getting up costs 1, making food costs 2, making a phone call costs 2, watching a tv episode costs 2, etc
the purpose of spoon theory is to explain to abled/healthy people what being disabled/chronically ill is like, in a way they might find easier to understand
it highlights how little energy disabled/chronically ill people have when compared to abled healthy people, how much more energy things can cost, & how careful they have to be in prioritising what they spend that energy on
disabled/chronically ill people also use it as a way of talking about their energy levels
if you say “i’m low on spoons”, you’re not just saying you’re low on energy; you’re saying you’re low on energy because you’re disabled/chronically ill
for this reason, abled healthy people don’t get to say “i’m low on spoons”
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I think that really depends on 3 things – 1) if you have a fenced back yard, 2) how much exercise your dog needs, and 3) how much well-trained / well-behaved the dog is.
Personally, I have a small, non-shedding dog who is low-energy / doesn’t need much exercise, and he isn’t hard for me to care for unless I’m having a pretty severe pain day. He wasn’t house-trained when I adopted him, and house-training a dog takes a lot of energy (at least it does for a person with already really limited energy).
People won’t always let you do this, but you meet a pup & fall in love it’s worth asking if you can take it home with you on a trial basis to see how the dog meshes with your home / schedule / etc.
My original plan was to train him to fetch things for me if I didn’t have the energy to get them myself. That hasn’t worked so well. He’s clever, though, so I have hope.
He does need to be walked every day but he doesn’t mind if I can only manage a short walk. It keeps me active and gets me out of the house and these are, most days, good things. His bags of food are heavy, so I need help with that often. If I’m not feeling well he lies with me and makes me feel better.
It’s basically a breed thing. A larger dog will be stronger, but giant breeds need less exercise. Little dogs can be energizer bunnies. Older dogs might be spoonies themselves, so if you’re looking at a shelter that’s a factor. Short walks for them, but still get them out often because they need the change of scenery. (Balance that with the fact that they will cost more at the vet and will die sooner.)
Puppies will take all your energy. They have to be trained, and their energy doesn’t dissipate for a couple of years. You’re better off with an adult dog who has calmed down a bit and knows all the basics. Puppies are cute and all but they don’t understand “no” and you’ll be running after them saving things from their chewing for a while.
It’s very important that they’re well-behaved on a lead. They’ll pull you off your feet otherwise and hurt your arms. If you can get an adult dog who is already well-behaved on a lead, great; if you’re getting a puppy, really focus early on on this so when he’s bigger he won’t be a pain.
I have wanted to do this for a long time, so now as this thing called fibromyalgia is keeping me awake, it’s a good time. Yep, let’s do this.
It’s something I don’t talk that much about, actually. Not because I’m ashamed or anything, it’s just like… It can be so much. The picture above pretty much shows how my body feels at times, but I wish there could be added something that look like deep knife cuts too, then it would be perfect. Unfortunately I don’t know who has made the picture. One day I want to be the model for a body art where my pains are painted on my body, maybe people would understand me then.
Most likely I’ve had fibromyalgia since I was about 21. At that point in my life, I came to a point where I was fed up with every thing and I went through a tough period of depression and a burn-out. I had no energy left and I felt numb, in both body and mind when I not felt the urge to just lay down and cry. The years before could be summed up like this; deaths in close family, a few episodes of sexual abuse from a so-called friend, bullying through the entire elementary school (don’t under-estimate the effects of late trauma), and giving everything for those I really cared about, only for getting my throat filled with shit. It’s a miracle I didn’t drop out from college, I have my boyfriend, closest friends, parents and brother to thank for that.
Eventually I got through this period, but there was something else slowly starting to appear, despite the fact that I was active and training in order to avoid what forced my mother into a passive life; fibromyalgia. I started to notice numb, aching pains wandering around my body. I got problems with concentrating. My need for sleep just grew, and often I felt tired during the day. I had some episodes of almost falling asleep while driving and it terrified me; I who love driving, and love driving to destinations far away and could do so for entire nights?? I got problems keeping a steady rhythm of day because of my messed up sleep pattern. And every morning, my body felt like it had been frozen during the night and I could use 15 minutes just to sit up in the bed. And the pains in my body just grew, they were everywhere; in muscles, joints and there was no pattern. I have a history of back problems since I’m a master in hurting myself in stupid ways (falling off horses, rugby, tripping etc) and I know what pains that can be located to different points in my back. I can go to my chiropractor and point “exactly there” when there’s a locking I can’t fix myself. But no, these pains were different.
I have no idea for how long I denied these pains. I tried to find other excuses, I refused to have the same condition as my mother. She wasn’t taken seriously by doctors in 1994, and she fought for years to find out what it was and was treated for a long list of conditions without effect, and when they finally figured out what it was, she was so badly affected that there was no way back and she hasn’t been working since 2001. I remember those days so well, it was horrible and I remember the frustration knowing there was nothing I could do for her – I was just 12, what could I do? My mother isn’t of the kind who is comforted by hugs. Instead it was better to send knowing looks and do my best to help her with the house chores when my father was at the sea.
Eventually my pains reached a level where I was desperate to find out what it was and my boyfriend and mother confronted me with the fact. This was just how it started for her, and I went to the doctor. Fortunately, he was wise enough to just send me directly to the rheumatologist, and after a painful consult, it was clear. 16 out of 18 triggerpoints, and especially my legs were bad. But here’s the good thing.
My rheumatologist was positive, and she established contact between my doctor, chiropractor and physiotherapist.
I’m not the worst case. It’s bad enough, but it could be worse. I had discovered this early and I had been taken seriously when I came to the point that I asked for help. I got stronger pain meds than I already had (1g pracetamol and 1g ibuprofen) and they help me take the worst peaks away on bad days. I have adjusted to the moderate pains, and I’ve started to do medical yoga and it helps a lot. To me, it has been all about taking the control I felt like I was losing. Sometimes my body is trembling for no reason, but I have learned to handle it through yoga. My chiropractor and physiotherapist have experience with my diagnosis and they have a “prescription” that works pretty well. Every fourth week I to them and get my spine “un-locked” to avoid more severe stuff and a carefull massage to make my shoulders relax again, since they get very stiff in bad periods because of how I tense my body.
I’m also trying something new now; LDN – low dose naltrexen. It’s originally a medicine for treating addiction, but in low doses it works as pain relieving. Long story short; it tricks your brain to produce more endorfine, a natural pain killer. Already on my fourth day now, I can feel an improvement. I take 3mg every night 23.00, so I’m really excited to see how it goes. If anybody wishes me to do so, I can update about how this goes on.
Also, being careful with what I eat. No more beefs or lamb on me, and preferably little swine. Mostly chicken, turkey and venison, plus fish, and LOTS of vegetables. It has made my stomach calm down and the bad periods are shorter.
Call me a believer, but another thing that has given me much comfort, is to grow a strong relation to Eir, the norse godess for health and healing. Some of you might know that I’m an asatruar. Yes, I worship the norse gods and powers – to me they are pictures and personifications of nature and ourselves, what happens outside and inside us. The two last years I have searched for strength and hope in Eir, and to me – it has worked. It’s not like I’m telling people to convert, but finding something you hope and believe in, might help. We all need something to hang on to in dark times, whether it is a god or a pet. Pets has also brought me much comfort, I should be fair to them too lol. to be correct, my parents’ pets. Until recently I lived in an apartment where I couldn’t have pets, and that wasn’t ideal to me, a girl with close bonds to animals and nature.health
For the first time since I got the diagnosis 06.12.13, I’m optimistic. Like, I actually believe I’ll be able to work for as long as I want. I dream of working till I’m at least 62, and about 80%. I have a job I handle pretty well. I go on walks and enjoy the outdoor life. I’ve got a silencer for my hunting rifle so my shoulder won’t ache for a week after. I’ve moved back to my childhood home. I have fandoms. I have the medicines I need. I have my concert bands. I have friends, family and the most wonderful boyfriend in the world – where would I have been without him? Not here. Somewhere bad, most likely. He has saved me in so many ways.
I don’t know where I want to go with this, really. I just felt like sharing my story. Both so people might understand what fibromyalgia is, and so that others with this diagnosis might see that there is hope. YES, sometimes it SUCKS to have this rushing through my body and I have days where I isolate myself. I have days where my body isn’t working and I have to cancel all plans. Sometimes I’m crying because my body hurts so much without reason. But maybe, with LDN, this can get better. And I have a team that does everything they can to help me, and so far they have done good. I’m way better now than what I was a year ago just after I got the diagnosis. Every day is a struggle, but then it feels the better when I win the battle and can do the things I want. My thoughts are to let this become something I can grow on, not to drag me down.
I think this rant is over for now. Who knows, I might write about this again. Let’s see.
Holding the Bowl 