#chronic illness life
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“well it’s good your tests came back normal!”
no. it’s not.
a normal test result doesn’t mean i don’t have symptoms anymore. it just means we’re no closer to an explanation.
i’m still struggling. my symptoms are still getting worse. we just don’t know why, also meaning they don’t take me seriously.
a normal test result is not a a happy thing when disabled.
#disability#disabled#disability struggles#disabled life#physically disabled#actually disabled#disability life#chronic illlness#chronically ill#chronic pain#chronic illness life#tw medical#chronic pain struggles#chronic pain life
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#chronic illness#spoonie#but you dont look sick#spoonie life#chronic illness life#fibromyalgia#fibro tag#fibrowarrior#mecfs#cfsme#myalgic encephalomyelitis#chronic fatigue syndrome#ehlers danlos awareness#ehlers danlos syndrome
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#spoonie meme#spoonie#spoonie stuff#chronic illness memes#chronic illness life#chronically ill#chronic pain#chronic pain meme#chronic fatigue#chronic fatigue meme#just ibs things#ibs meme#ehlers danlos life#hypermobile ehlers danlos#ehlers danlos syndrome#irritable bowel syndrome
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Listen, I know it’s just a meme, a joke, but the whole «you’re literally *age*, go get a job» type of replies that are all over Twitter makes me want to shrivel up and die.
I already feel like a waste of space because I can’t contrubute to society in a «normal» way.
Seeing those tweets makes me feel like I’m not worthy of having opinions or exist in fandom spaces because I’m too sick for a conventional job.
#and I’m tired of acting like it isn’t ableist af#irl tag#personal#chronic illness tag#cw ableism#ableism#neurodivergency#neurodivergent#adhd#autism awareness#adhd things#cfs#chronic illness life#chronic illness
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Three years ago this week, I had a hysterectomy as part of a surgery to remove stage IV endometriosis that had taken over my body. The endo was so bad, my uterus, ovaries, and bowel were all adhered together in one large mass. My surgeon removed a large number of endo adhesions, cysts, and fibroids as well as removing my uterus, tubes, cervix, and one ovary.
It was unreal how even the immediate post-surgical pain was noticeably less than what my pain levels were beforehand. There's no cure for endometriosis, but the hysterectomy at least meant I would no longer have periods that caused me to black out from pain.
That alone was a huge bump to my quality of life. Unfortunately, endo is a relentless disease and within nine months of surgery, I started experiencing that well-known pain again.
I ignored it for as long as I could, not wanting to admit that it was back already, not wanting to go back to the non-stop appointments and scans, where my body belonged to the medical system.
Subconsciously, it was like if I didn't say it out loud, if I didn't seek treatment, it meant it wasn't real. I played wilful ignorance for nearly a year, but of course, while I was ignoring the endo, it was busy spreading.
The thing about endometriosis is, the only way to fully identify how bad it is, is to have surgery. Ultrasounds and MRIs can give an idea of what's going on, but surgery is the only way to medically dx it with certainty.
Surgeons can remove the adhesions, but that causes scar tissue and unfortunately, the more scare tissue you have, the more endo grows back. Even the most skilled surgeons can't remove every cell of endo in a patient.
How long it takes to come back varies by person, so I guess I just drew the short straw with only getting nine months of relief.
Luckily, there are some ways to manage the pain. I've been doing a chemical menopause treatment for about 18 months now. I get a monthly implant that stops my one ovary from producing hormones (which can make endo worse). And it's been LIFE CHANGING, to say the least.
This treatment has been SO effective on the pain, I mostly forget that I have endo at all. I rarely feel the pain, usually it's in the week leading up to my next injection when my implant is wearing off -- I feel it and the pain stops me in my tracks.
Lately, that pain comes earlier and earlier each month, and every month, the pain is worsening. I am terrified about what this all means. Usually, the treatment I'm on is only used for 6-9 months at a time. I'm already at 18 months, which I am grateful for. But even this isn't a long-term solution.
I'm so scared. I'm so scared of going back to the life I had before surgery. The life where I was in debilitating pain every day, the life where I was bed bound for weeks and months at a time, the life where my body belonged to the medical system, the life where I was always being poked, prodded, and scanned. The life where I made such regular visits to the emergency department, we had to keep a hospital go-bag at the ready.
I don't know what comes next. I don't see my gynae again until April and I desperately hope she says I can keep doing this treatment, because at least it manages the pain 80% of the time. But if I can't, if the long-term risks are too high and I have to come off this treatment, I don't know what I'm going to do.
I guess I'm posting about this to not only get this off my chest, but also so other people with endo might see it and know that you're not alone. This disease destroys lives and is a constant battle, but you're never alone. I see you. I'm so proud of you. All we can do is keep fighting. <3
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I never understood why other lactose intolerant people or people with ibs were so willing to endure the pain of eating food their body hated.
Girl, even my safe foods aren't safe sometimes, you really think I'm going to be eating full fat ice cream? No ma'am.
#ibs#relatable#hot girls with stomach problems#chronic pain#chronic illness#chronic illness life#lactose intolerance#food#lol#safe food#relationship with food#anxiety#spoonie#invisible disability#i have a tummy ache
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I took way too long of a walk yesterday & I can hardly move today. My bones are creaking... I think they want revenge.
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I woke up
Everything hurts
Why
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My fatigue is so high and I am having a nightmare of a time getting myself up to shower. But I also feel so icky that I really want to.
I wish my brain and body could cooperate with me sometimes.
#i am telling myself i will hop in after my seltzer and fic have been enjoyed#maybe if I designate a Time it will be easier#veritasrose rambles#chronic illness life
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there are worse things than waking up with a migraine… but when it happens, it’s hard to remember what they are. it’s not even noon yet and i’ve already had A Hell Of A Day
#migraine#migraine with nausea#yay fun#spoonie life#chronic illness#chronic illness life#venting#losty is tired y’all
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I want to send some love to all my chronically ill people who are just barely making it through, who feel like shit today, whose families downplay their illnesses today, who are blessed enough to have a good day and enjoy it, who didn’t travel because people are acting like the pandemic is over, and everything in between. Stay hydrated. I’m grateful for whatever joys, small or big, you get today.
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#self care#self care reminder#positive reminder#spoonie life#spoonie#chronic illness blog#chronic illness life#myalgic encephalomyelitis#fibromyalgia#fibrolife
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#ibs life#fuck ibs#chronic pain memes#chronically ill meme#spoonie meme#spoonie tag#spoonie#ibs#irritable bowel disease#irritable bowel syndrome#ibs meme#chronic illness#chronic pain meme#chronic illness life#spoonie stuff#chronically ill#ibs flare up#chronic pain
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Nobody tells you how physically exhausting it is to heal a bone.
I accidentally walked just over six miles yesterday to visit a waterfall and quarry with a friend and I am STILL exhausted this morning. (it was worth it though)
I know myself pretty well and six miles is the upper limit of what I can handle in a day, but normally I'm fine by the next morning...
Not now. I am tired to the very bottom of my being.
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One week since I tested positive and I still feel like shit. Thankfully, a lot of the cold-like symptoms seem to be over, but I am still SO run down and in SO much pain. (For whatever reason, covid makes my internal scar tissue hurt like a son of a bitch!! Like the surgery scar tissue just feels so inflamed and tender and constantly ouch)
Currently on a course of prednisone to get my asthma under control and that's just making all my systems go a bit haywire. I couldn't sleep last night due to pain and that classic wired but tired feeling.
In good news, Doom Them was able to return to work today (two weeks after they started feeling ill). They're still struggling with fatigue and pain too, covid fucks up both of our chronic pain stuff. But at least they were able to start easing back in to work.
At least I'm used to being bedbound for long stretches of time, so I've been fine as far as mental health. Playing lots of Zelda (TOTK), watching tons of stuff on Dropout, texting lots of people. All I can do is wait this out.
#about me 2k24#life in the time of covid#not looking forward to this making my CFS/me permanently worse like the first covid infection did 🫠#actually disabled#chronic illness life
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I love my nebulizer because it saves my life or whatever but, and I cannot stress this enough, I feel like the biggest fucking dweeb every time I use it 😂
In the words of Lord of the Flies, "Sucks to your assmar!"
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