#crps warrior
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Honoring Lord Hephaestus this disability pride month by being gentle with myself and using my mobility aids when I need them during this horrific pain flare instead of putting it all off and acting like I’m okay like I usually do. Does it feel like a setback? Yes. It always does. Never mind the fact my condition is incurable and that I’m always in an awful amount of pain. But I know He wouldn’t want me to make it worse for no reason.
#hellenic polytheism#helpol#hellenic pagan#hellenic pantheon#hellenic paganism#hephaestus deity#hephaestus worship#disability pride month#crps/rsd#crps warrior
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Chronic pain problems •
#crps#fibromyalgia#chronicpain#spoonie#ptsd#living with pain#crpsproblems#chronic illness#crps warrior#crps fighter#complex regional pain syndrome#mental illness#mental health#bipolar#anxiety#depression#PTSD life#ptsd awareness#Crps stress#Crps strong#crps/rsd
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Being chronically ill in a heatwave is torture. I'm so grateful I bought an a/c 4 years ago, otherwise I wouldn't survive with my dysautonomia. I can't regulate my own temperature. Already have a fever due to a throat infection. And my heart rate is consistency around 100 even though I am lying on my bed doing absolutely jack shit.
And then there's the shoots of agonizing pain that are going through my limbs.
Yeah I'm doing great.
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Today is #GivingTuesday!
As most of you know I am fundraising to receive life saving ketamine infusions at a clinic in Florida to treat my Complex Regional Pain Syndrome. I cannot tell you how blessed and grateful I am to have this opportunity. There is so little research on CRPS that for years I had no hope of any treatment or symptom management. This disease ate up my life, a life which I now have the chance to get back.
To celebrate Giving Tuesday I want to share 5 things I'm excited to do after treatment:
5. Make more art - This is something that I already do, but with great difficulty. Sculpting and painting are my two favourite forms of visual art but are especially exhausting. I want to pursue my inspiration uninhibited and be able to fully express my creative vision!
4. Interact with nature - Nature has been a huge part of my mental, physical and spiritual healing. I feel most myself when I am deep in nature, but this is difficult for me because forests aren’t very wheelchair accessible. I dream of hiking, swimming, climbing, gardening, exploring this beautiful earth in every way I can.
3. Go back to school - I had to drop out of school in grade 12 because I was too sick to keep up, even with alternate education. I loved school and I love to learn. I want to finish high school and go to university to study film, visual art and writing.
2. Make movies - I am a filmmaker and have been since I first watched a movie. My love for film is my most consistent passion and driving force. I am an artist and a storyteller and I have so much to share with the world!
1. Be myself! - I want to figure out who I am and be that person with my whole heart. I got sick so young that I never had the opportunity to explore myself as an individual human being. I’ve learned so much about myself over the last year and I know there is so much of me left to discover once I am given the chance.
By supporting my fundraiser, whether through donation or sharing, you are helping me live the life I have only dreamed of. For that I am endlessly thankful.
#givingtuesday#crowdfunding#gofundme#fundraiser#signal boost#disability#chronic illness#crps#complex regional pain syndrome#crps awareness#disability support#community action#medical fundraiser#direct action#crowdfund#opheliarambles#crps warrior#please reblog
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Celebrating disability pride month by practicing unsafe mobility aid practices. Like sitting on my walker without putting the brakes on. Not because I think I’m cool or anything it just never occurs to me to do that until I fall 🤷
#mars speaks#don’t recommend doing this#again I’m just forgetful#disability pride month#crps/rsd#crps warrior
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When I make jokes about my chronic illnesses, my healthy friends are always like "404 Error, response not found" and I'm left there feeling awful.
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"Fuck ableism" says the sticker on my wheelchair. My children and I attended national night out in our town last night. I had used up all my spoons for the day, doing laundry, so my kids encouraged me to use my wheel chair. I was hesitant, because most people in my town know me without one. Most don't even have a clue that there's anything wrong with me. I did it anyway, because it's time my disability became visible, no matter the perceived cost to my mental health. It's time I stopped ignoring my needs because I'm attempting to make my existence more palatable for everyone else.
I ran into a large group of people from my previous employer who have done nothing but throw shade at my chronic pain. They had never seen me use a wheelchair. One in this group, I keep mistakenly thinking is my friend. I wheel up to him to say hi. My son points out to him, the sticker. His response, and I quote "fuck people who use the word ableism". I froze in that moment with fear. This was, after all, what I was afraid of, and I manifested it. I'm NOT operating from a place of fear anymore, when it comes to my right to take up space in this beautiful broken body i was blessed with. I will no longer cower, simply because this broken body takes up a space that makes others uncomfortable.
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A little goes a long way, an ant makes a kingdom where ever you are today you are sure to receive wisdom - learningtobeme365
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My introduction to Tumblr, I have absolutely no idea how to use this properly but I’m eager to learn 😊
#disabled artist#abstract#abstract art#abstract geometric#geometric#geometric abstract#geometric abstraction#crps warrior#CRPS#constructivism#kandinsky#lászló moholy nagy#laszlo moholy nagy#art therapy#art heals#geometric drawing#rotring#abstract drawing
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My birthday’s coming up and I still need help
It’s been almost a year since I woke up in a never-ending living nightmare, the pain continues to worsen and spread and I’m losing mobility in my right (dominant) arm as well. I have an appointment to see a specialist in November, a whole 14 months since the pain started, but insurance won’t cover any experimental treatment. There isn’t enough research on CRPS so the only treatment offered is experimental, I’m scared and in pain and losing hope to regain some quality of life. Please consider donating, it’s my only wish for my 20th birthday.
https://gofund.me/de4f4268
#CRPS#crps warrior#chronic pain#chronicpain#disability#invisible disability#crowdsourcing#ebegging#fundrasier#lgbtq
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3 years ago today, I broke my arm.
3 years ago today, it broke my life.
What seemed like a harmless slip down a hill has become a point often at the edge of a cliff.
Lots of medical jargon, little talk, no talk or talking down to me.
Suggestions. Well wishes. Condescension. Annoyance. Grief.
I have lost my temper. Lost my shit. Lost my patience. Been completely over it.
And I can’t say the journey is over. Because this breakage, will never fully heal.
From a badly damaged arm, has grown a badly damaged life.
I keep being told how incurable it is. Untreatable. Something that should just be managed. Something that will never go away.
Pain they told me. At levels that seem unfair. Often when you least expect it. Forcing you to stop. Try to silence the world.
Something you can’t soothe over with a tablet. No medicine can touch it. It will change with the seasons. It will change with every emotion you feel.
There will never be a way around it. You might win for one day, then lose 12 more to a flare.
Non acceptance only feeds its fuel. Pity stokes its fires even more.
Rest too much, and you’ll over do it. Don’t stop often enough, and it will slam you to the floor.
There’s no point of braveness that will be enough. There’s no shining knight, no armour, no prize or medal at the end.
Instead there’s lessons. Constant learning. Over and over, so you don’t dare forget.
And moments of fear, that it might become worse. Could change at any time. That maybe I’m an imposter. That maybe it’s too much.
I can’t always see beyond this point. I can’t see how it can change.
I also can’t see how much damage it has done. Often closing my eyes, wishing it would go away.
I’m stuck. Like my arm in that moment of time. Not sure who to turn to. How to bandage it. How to make it new.
And I want so desperately for some form of control again. More hope. More want. More grace. More calm.
3 years ago, I was on the eve of something different.
I saw the layout of the land. My plans. My hopes. My goals.
Today I feel not all that much wiser. Still unsure how I’ll be able to move beyond this point to anywhere else. Or how soon.
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• For I have a warrior heart •
Waking up, it’s not easy
Feeling the chronic pain within. It burns like the flames of death.
3 years ago I had an incident which led me to fracture my ankle. I begged doctors; something is wrong. “It’s all in your head” they snarled.
I am now living with chronic Complex Regional Pain Syndrome. Despite treatments and medications, professional opinions - they can’t fix me
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Chronic pain problems •
#crps#fibromyalgia#chronicpain#spoonie#ptsd#living with pain#crpsproblems#chronic illness#crps warrior#crps fighter#complex regional pain syndrome#mental illness#mental exhaustion#mental health#bipolar#anxiety#depression#pain
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So wish me luck, but I am talking to the municipality tomorrow about getting a permanent wheelchair. Since the test at the amusement park went really well and it made a world of difference. I can also see this being an ideal solution at conventions, long (accessible) walks, day trips, holidays/vacations, etc.
Right now I am borrowing a standard model which is clunky and heavy (17-20 kg 37-44 lbs). And that works okay, it does its job.
But for a permanent solution I need something lighter so self propelling is much easier. I did find one, it's not too pricey (about 360 euros with the options I want all included), but it's not cheap either.
And there might be a chance the municipality (wmo) will cover it. I have a no already, it won't hurt to ask, and the only way is up. Either they cover it, or I can save up for one.
It's gonna be this one:
It weighs 12 kg max (26 lbs) is collapsible, has anti-tip wheels, adjustable arm rests, collapsable back, adjustable push handles, a belt, leg rests, and i want a cane holder.
So that's what's up. That's what I've been doing.
Oh and the trip with my sister went great, we had so much fun, and the wheelchair was like magic. I had SO LITTLE pain the days after! Like I still had pain, but compared to comic con when I came back with a solid 8-9 and a 10 on the fatigue scale, and now I came back with a 3-4 on the pain scale and a 6-8 on the fatigue scale.
HUGE DIFFERENCE!!!
#ambulatory wheelchair user#hypermobile spectrum disorder#fibromyalgia#crps warrior#chronic pain#chronic fatigue#actually disabled#chronic illness#ben says stuff#ben's wheelchair chronicles
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One year ago, on this day, I was admitted to hospice. I have come so far since then, but this journey is not over. I am fundraising for lifesaving treatment so that this time next year I can be not just surviving, but thriving.
Please donate if you are able, it’s cliche but every little bit does help. Sharing (social media, email, word of mouth, carrier pidgeon) helps just as much.
#you can read more about my journey in the campaign updates :)#please reblog - likes don't help#fundraiser#signal boost#disability#chronic illness#disability support#healthcare#medical fundraiser#crps warrior#crps#community action#direct action#crowdfund#crowdfunding#opheliarambles#gofundme
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Today has been a rough day. My feet have been so tender. My ankles are so stiff and every time I move them the pain sears through me. I just want to curl up in a ball and die. The worst part is no one seems to understand how bad it is, how much this is truly affecting me. Is it because I don't cry all the time? Because I make jokes and fun of my condition? Is it because I still laugh and smile? I don't think they realize that I am just trying to hide the pain, the worry, the fear, the stress behind a mask. I hate seeing the pity. I hate the intrusive questions. I hate the judgement. I feel like everyone sees me as a problem, a leech, or just straight up pathetic everytime I talk about my condition and my struggle to do things...even simple day to day tasks like laundry, dishes, cooking. Hell, I struggle to shower and handle my hygiene sometimes. I hate it. I hate myself.
Why? I just want to be the way I used to be. I want to move without pain, without limitations.
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