(Source: https://www.youtube.com/)
Tag: chronic pain
Help, My Friend Won’t Stop Having Fibromyalgia At Me!
Carolyn Hax, 10 Feb 2010:
Dear Carolyn: One of my friends has had fibromyalgia for the past year. It makes me sad, and so I like to find alternative treatments and cures and tell her about them. She’s gotten really annoyed with me for doing this, but I am only trying to help and I think she should be more willing to listen to what I’ve found. She has a doctor she sees regularly and takes medication, but I don’t know why she brushes it off when I give her my advice. I feel really unappreciated and am starting to wonder if she even wants to feel better. – California
Dear California,
Your friend has put you in a terrible situation, without apparent regard for the degree of injury here. Sure, she lives with a painful, chronic medical condition that affects her ability to participate in the world and yadda yadda yadda, but you feel sad and unappreciated. Where, I ask you, is justice?
Just because your friend manages her condition with the assistance of medication and a trusted medical professional of her choosing doesn’t mean she’s getting the best care available to her, which is to say, the care recommended to her by a person who can use Google.
The bare fact is that your friend’s fibromyalgia is, fundamentally, about you. On the surface, that may seem counterintuitive–it may seem like your friend’s medical condition is solely her business, and that the management thereof is something she alone is entitled to, but that completely erases you, a person who read a thing about gluten one time, from the equation. And that isn’t fair–indeed, it’s even less fair than having fibromyalgia, which your friend could easily not have if she only read those 45 articles you just forwarded her from WebMD.
Why would your friend brush off advice–advice you heard from not one, but probably TWO yoga teachers–about managing her medical care just because she feels more comfortable treating her condition in the manner of her own personal choosing? It’s logically because she does not want to feel better, which is a direct attack on you, personally, the individual in this situation with the heaviest possible burden to bear.
If you stopped advising your friend about the miracle cures available according to pamphlets you picked up outside Whole Foods, who knows what might happen? She might continue to make the decisions that she feels are best for her own health, and you’ll be left with no one’s medical care to aggressively manage without their consent, an unimaginable travesty.
But the sorry truth is that we cannot fix everyone, can we?
I think one of the worst parts of having a chronic disease is how it sometimes just breaks you.
You can have several bad days in a row and handle it fine; then one day you lose it because you’ve gone so long taking it that you eventually get to a point where you just can’t do it anymore.
You’ll try to open the dryer door and can’t.
You’ll be cold and won’t be able to get warm. The kind of cold where you can’t get warm so you want to put your blanket in the dryer for half hour but you can’t open the damn door.
You feel grateful for any help you have, but you wish you didn’t need it in the first place.
No one tells you when you get sick that you will have days that don’t just test your pain levels or your patience, they will literally test your very will to get through the day.
from the amazing heyatleastitsnotcancer.tumblr.com
[picture of a Siamese cat’s head against a triangle-sectioned background with many shades of blue. Top line of text reads: What I’m worried about: Being in agony the rest of my life || Bottom line of text reads: What I’m not worried about: Getting addicted to prescription pain meds]
Honestly? This. I’ll take the chance to escape having NO quality of life whatsoever.
I wish more people understood this.
here is what i don’t understand:
if an average healthy person is in a lot of pain and this pain is temporary but excruciating, their doctors, ER or otherwise, will give them strong medication, usually narcotics, whose strength will match the pain felt.
but when someone with chronic pain experiences pain above and beyond their normal everyday pain and this extra pain is temporary and excruciating, their doctors will give them weak medication, rarely narcotics, that the patient takes on a regular basis for less excruciating circumstances.
now if the chronic pain patient asks the doctors for something stronger, the doctors discourage them. they say things like ‘it’s dangerous to get used to narcotics.’ or ‘you can’t rely on narcotics for chronic pain.’
we chronic pain patients are forced to deal with more pain than the average healthy person everyday. but why does that disqualify me from receiving adequate treatment when my pain level goes above my extremely high tolerance?
the doctors need to respect us. we have more experience dealing with our pain than they do.
This is from the American Chronic Pain Association Quality of Life Scale.
The pdf is here: http://theacpa.org/uploads/documents/Quality_of_Life_Scale.pdf
It’d be beneficial for someone in the community who is both time rich and spoon rich to create a text copy of this for copy/paste and printing purposes.
This is great
Think for a second
Imagine with me.
You’re an athlete. You’re gearing up to run the next 5k in your town.
You get there, and your number’s on your chest just like everyone else. You’re at the starting line, just like everyone else.
Bam, off goes the start signal.
Suddenly, you feel a little funny. Everyone else around you is gaining a lead they shouldn’t otherwise gain. Even the little old lady who does this for fun is now almost 50 feet in front of you.
But you keep pushing, right? You’re bound to catch back up, you’re an ATHLETE.
You pump as much of your strength as you can into your legs. You’re using what feels like every ounce of effort you have in you to just get your legs moving. All the while, that lead that everyone has on you is getting bigger and bigger…
People are suddenly farther and farther away…
You keep going You have no choice. You’ve GOT to finish. And you do.
But that’s when you collapse from exhaustion. Everyone around you is looking at you now, very concerned, wondering what could possibly have gone wrong, you were fine yesterday. You looked fine even the whole time you were running! What could POSSIBLY have happened?!
You can fill in the blanks with any invisible malady you like: heart problems, asthma, fibromyalgia, sciatica, what have you. But it’s SOMETHING that nobody can see. It’s something even YOU didn’t see.
Welcome to mental illness.
EVERY DAY is that 5k. Waking up in the morning is the start signal going off, and no matter how much energy we could put into something as simple as making breakfast, suddenly everyone else around us has their day’s tasks half way done and we’re still standing in the kitchen choosing eggs or bacon as though our lives depended on it. And sometimes, it does.
Eating is a chore. Standing up is basically like asking us to climb a mountain. Taking care of ourselves is tiring. Let alone taking care of someone else, if we need to.
That collapse at the finish line of the day could be a panic attack, it could be a fit of tears, it could be the mounting and exploding feeling that you’re a failure, you’re worthless, why do you even bother. It could even be an angry and persistent suggestion that you should just kill yourself so you’re not wasting space.
And let’s not forget, we didn’t do this to ourselves. We couldn’t have predicted this, we aren’t just sitting there asking for people to pamper us, in fact sometimes that makes us feel WORSE.
And at the end of the day, quite possibly the best thing you could do is hold us, tell us it’ll be okay, and just listen.
Most often, there’s no rhyme or reason to our thoughts. I was a straight A student for a long time and if I got less than 80% on ONE test, I flipped out and resigned myself to failure. But anyone else would’ve been like ‘Sweet, I passed!’ People tell me I’m doing well at work, and I’ll just focus on that one mistake I made two weeks ago and oh well, I’ll get fired tomorrow.
We DO NOT DO THIS ON PURPOSE. And it’s not as easy as saying ‘Oh just stop being so hard on yourself.’ That’d be like asking your athlete self to just grow some new lungs/muscles/heart valves and you’ll be fine.
We know you want to help. ❤ And most of us appreciate it SO MUCH, OMG THANK YOU. But sometimes, cuddles, blanket forts and movie binges are enough to keep us going. We don’t need to talk or reason things out all the time.
19 Things People With Chronic Pain Want You To Know
are chronic illnesses physical disabilities? if I have chronic fatigue (aka ME, CFIDS, SEID etc), am I physically disabled (and thus can take part in things like cpunk) or no?
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.
Holding the Bowl 