#living with chronic pain

[akindplace]

My illness has no cure. It probably won’t have for the duration of my life. It won’t “get better” because the scientific community is still trying to understand it and there is not enough academic research on it, unfortunately. Many doctors haven’t heard of it, and they don’t always know how to help, how to treat it. Everything is always very experimental and there isn’t a single solution for the symptoms of my illness since every person suffering from it has very different experiences.

Yes, there is no cure, and they won’t probably find one soon. But there is something else that can be solved, there is a resolution to be found: it’s acceptance by society. Accommodation. That often involves people having to be educated, because often the worst judgments come from a place of ignorance. But I believe society can know better. I believe in advocating for the rights of disabled people. The quality of life of a disabled person like me can greatly improve when others understand that my body might work differently than theirs, that my limitations don’t always allow me to be the most productive all the time, that I am dealing with chronic pain, and chronic health problems, but I am still a person, just as anyone else.

As social creatures, we need each other. And it’s okay that different people have different needs. And needing more or less support should not define your worth or how integrated you should be into society.

[crazycatsiren]

My heart goes out to those who are struggling with opioid addictions and those who have died from overdoses.

It's not their fault that they wanted pain relief. It's not their fault that modern medicine remains lacking in pain management. It's not their fault that the American healthcare system is so messed up, and that insurance companies are nothing but greedy and awful. It's not their fault that they were given no options and could find no other ways out.

I love you. It's not your fault.

[jennyislander]

The difference a good physical therapist can make

So I have a thing. What is it? No idea. It could be two things. Diagnosing it or them requires me to not be managing the health crises of other family members at a time when I can also afford testing, so.

Anyway, I used to walk four miles pushing a stroller uphill both ways and then make dinner and do laundry. (I was fat, BTW.) I went on birdwatching hikes and camped. But starting mumbleteen years ago, slowly increasing chronic pain and joint softness and muscle spasms and my heart occasionally going like a jackrabbit in spite of obstinately normal blood pressure stole it all away. Now I have to ration my steps in order to get the absolute basics done.

In the midst of this slow fall, I had to fire my doctor. I was describing my symptoms and she interrupted me and told me to join a diet club. I had belonged to that specific club for years. Being in the club had reduced my weight, but had not prevented my pain from increasing or my mobility from decreasing. She did not want to hear it. Fat was my problem. Fat, fat, fat! So I fired her and never got a referral to anybody who might have helped. I just lived with it.

But I at last have confidence that this is going to change.

I had an acute attack of shoulder pain and immobility that got me a visit to a different doctor and a referral to a PT that I could afford. And this PT listened to me say "I am tentatively sure that I have fibro and/or some variety of bendy people disease, but I can't get a diagnosis RN" and instead of clucking at me about my ass size, she accepted that I had in fact been fat back when I spent all day outdoors and in motion, and showed me--this is the biggie--how to start again.

I had tried to "get more steps in" and "be more active" and "do cardio" and all I got was white-out pain, increased stiffness, and sometimes my legs collapsing, which is a thing they like to do. I had been following plans that assume a certain baseline that used to be my normal but is now higher than I can reach. The PT helped me map out my new baseline and then laid out a plan for getting above it.

The path is different for everybody. Some examples from my path:

To build strength, I first lay on my back and pressed a broomstick straight up. Then I did the same exercise sitting, then standing. Then I switched to 3-pound free weights. When those are easy, I'll add more reps. When those are easy, I'll go to 5-pounders. And so on. And if, at any point, stuff hurts? I can go back a step. I have an alternative to giving up.

In the same way, slopes and steps are unspeakably painful for me to walk on anymore but I miss walking. My PT helped me figure out how to just add a tiny bit more walking to my day. I park in a neighborhood that is flat, has a sidewalk, and has a lot of houses on small lots. I walked to the first driveway and back until it was easy. Then the second. I am working on getting to the third driveway. 15 more driveways after that. Take it slowly, she said. Don't push beyond your comfort zone, that's how you hurt yourself more. Don't focus on numbers of steps or calories burned or anything abstract. There's the driveway. Can you get there and back today? No? Can you do any driveways today? No? Then go back to what you could already do before you started seeing me. Just walk around the car. Practice your good posture and let yourself feel how good it feels to move within your comfort zone.

I am never going to climb mountains again; I know that. But for the first time in mumbleteen years, I have a reasonable hope that someday--I am aiming for the end of next summer--I will be able to just go for a walk. Maybe even uphill.

A PT who understands that your goal is not to recapture your youth or get skinny or something else externally validated is worth their weight in gold. She is helping me reach my true goal, being able to move my arms and legs in ways that feel good to me, regardless of what anybody else thinks of my looks. I expect my circulation will continue to improve and so will my strength and endurance. Who knows? My free weight set goes up to 35 pounds. If I keep on adding a little at a time...

If you are looking for a PT, I hope you find somebody who looks at you where you are and helps you start from there. I hope you find somebody who cares more about your joints and muscles than about your butt or belly fat.

[patchyourbrokenwings]

It doesn't matter how I feel, I have to go clean my bathroom cause no one else is gonna do it for me. I just wish people would realise more how hard it is to constantly having to fight chronic pain. It is soul crushing and so defeating. But still got to clean my bathroom. Anyways.

[ijustwannabehonest]

Living with chronic pain

(My experiences)

I wasn’t taken seriously by the doctors before the age of 18 because I was “too young” and I just wanted to skip school.

I’m not lucky because I don’t have to participate in pe class. If I do my pain gets worse and I need to use the washroom because I’m throwing up due to my pain.

I need to get a blood test every few months. Most of my blood vessels in my arms are messed up.

I have to cancel plans because I can’t move.

I need to take over the counter meds.

[spnfic85]

Wanna know my biggest secret?

The meds never work, they just soften the blows. It’s easy to fake it.

I’m scared someday I won’t be strong enough.

But… maybe just… maybe the quiet of nothingness will finally be my peace…

[fibrefox]

Passing out is always a weird experience.

It happened at the pain clinic today. One of the injections hit a nerve hard. I started to feel light headed, my ears ringing. I said "I feel like I'm going to pass out."

My partner started to say "that seems pretty lucid for someone— ope," and caught me as I started to fall forward.

When I woke up, I didn't know who I was, where I was, who I was with, or why everyone was so loud. It took a while before I felt like a human being again. Just when I started to feel like I was strong enough to leave, my period cramps cranked to 11 and had me doubled over.

Might try to avoid going to these appointments on an empty stomach.

[staceyfeitz]

My Story of living with autism and a lifetime of abuse Part 1

I was born in 1966 to an unwed, working mother. Up until I was 4-1/2 years old I remember life being happy. You see when your young, Autistic, have ADD or ADHD or, stick out in some way that is not what society calls normal you are a draw for predators, bullys, and the just plain evil people of all ages. And when someone is abused, bullied, and/or, traumatized it doesn’t end when they get out of…

[chadepitanga]

there's something so raw and soul crushing about spending your late childhood+teen years suicidal then growing up and actually wanting to live, after an ungodly effort, only to see your health deteriorate because of chronic illness.

[ancient-reverie]

a moment of silence for all us disabled ones who had to watch each of their friends move on with their lives without you and get jobs, go to school, have partners come and go, get engaged and move house etc.

shout out to my fellow struggling people who are still sitting in the same bedroom they grew up in. the ones who can't get a job, can't make new friends, can't find a partner or partners, can't move house and can't go to school.

I hope one day we can all find someone to at least sit with us in our rooms. I see you and I understand... and I'm sorry we can't be that person for each other

[personalcoachjen]

Finding my niche and good coach advice

I had a phone call with a member of this life coaching group I found on Facebook. It was such an informative call I couldn't believe it. We talked a lot about finding my niche and learning as much as I can about coaching so I can start my business in the best way possible. We talked about narrowing my focus and figuring out what is my ideal client. I discovered that my ideal client is me, and women like me. I have had a long and checkered journey with my health and chronic illness. I spend a lot of time having all these seemingly unconnected illnesses causing me pain throughout my body and I couldn't figure out where they were coming from, I knew there had to be more.

I eventually was diagnosed with fibromyalgia, which was like an aha moment because every other condition I suffer is linked to fibromyalgia/comorbid with it. Many people with fibromyalgia have migraines, IBS, asthma, GERD, ADHD, bipolar disorder, depression, PTSD, anxiety, physical injuries, past infections, and things like that. It is believed that physical and/or emotional trauma, past infections, past or recent injuries, and things like that are part of what leads to someone having fibromyalgia. When I was diagnosed with fibromyalgia and read this about it, it made perfect sense.

I have both physical and emotional trauma, past infections of bronchitis, pneumonia, a severe strep infection that spread past just being strep throat, and several past injuries and a back injury that occurred right before my fibromyalgia diagnosis. Once I learned this, I started trying to do things to help my fibromyalgia and structure my life in a way that makes it possible for me to continue to function. I had people that were there to help me through the process, helping me, guiding me, and holding me accountable.

I realize that I can be that person for others in the same situation and that this should be my niche for coaching. I can still call myself a health coach but now I can gear my messaging toward my ideal client, who are people like me with these long, checkered chronic illnesses and health journeys that need someone's help to find their way through them and get to a point of functioning and having their life working as well as it can for them with their illness(es).

[patchyourbrokenwings]

i'm 27 now which means i've been in chronic pain allthrough my body for 12 years. yet the pain i felt yesterday was completely new and terrifying. i still don't know how to live a life full of pain that never stops.

[kelliaellis]

The Spoon Theory & Chronic Pain

I shared the spoon theory in my last post here. I’m sure you noticed that the girl in the story has the medical condition Lupus. While obviously not the same medical condition a lot of what she says – No, most – No, all of what she said still applies to anyone with a chronic medical condition. With fibromyalgia and my other chronic pain conditions I also deal with the daily grind of the limits…

[fernthefanciful]

Please please please I am BEGGING y'all

When you visit someone who is chronically ill or disabled and their house is not as clean or tidy as you'd like: just don't say anything

We *know* okay.

Trust me, we know

We'd love to see it differently too. But the truth is we *can't*. And you know this, you do!

So please. Just shut up. Don't pile on more guilt and feelings of inadequacy. We have enough of our own

[cromwelll]

⚡️💥⚡️Reblog this post to give your chronic pain to the hated U.S. government official of your choice.⚡️💥⚡️