#uctd

[sleepycatmama]

I hate hate hate feeling the arthritic pain in my right shoulder, trying to keep sewing but feeling the pain making it harder and harder. I want to craft! I feel like I'm losing myself when I can't.

[forever-food-and-fandoms]

Hi internet friends. I just want to say chronic illness sucks. It’s summer I want to have fun. But I’m in a giant flair that I thought might be over, but no. Good thing it’s Friday!

[christinziogrimmace]

Well I know there’s gotta be some people in the disability community on here, just wondering how many that are active that have a rheumatic disease (UCTD, Lupus, Rheumatoid Arthritis, Sjörgen, etc)

Hi I have Undifferentiated Connective Tissue Disease (UCTD) I found out just before the panini hit, I’m on hydroxycholorquine which helps me manage my symptoms *most* of the time but with the weather getting cold I’ve been experiencing a lot of pain in my leg joints especially my left knee. It sucks. I can only handle doing stuff on my feet for so long before I need to sit or lay down at this point.

[mybendyplaces]

hello everyone! i’m ness!

i’ve been dealing with chronic pain for 4 years now and only recently have doctors started taking me seriously. i wanted to make this blog to be a part of the spoonie community to have support and people also going through problems with doctors.

I’m 19, INFP-T, Hufflepuff, and a junior college student! I have some mental health problems as well as physical health, and i definitely don’t mind answering questions or making friends!

My blog will be as accessible as possible, but please note that i’m one person and i may fall through. be kind if you want to request i change something to be accessible!

i’ll work on a proper dni soon. ciao!

[makkasbuns]

“why do you go to bed so early?” “why are you always tired?” it’s the autoimmune disease

[twitterbeefwithneiljosten]

One thing nobody tells you about chronic illness is how much energy it takes to do basic hygiene. I’m sitting here trying to decide if I have enough spoons to shower or if that one simple task will ruin my day tomorrow.

[xerospaced]

It's not infrequently that I have days where my "lesser" but constant symptoms are on crack and threatening to drive me to madness.

I keep hearing the repetitions of well-wishes, "get better", and all that malarkey.

I used to go to the lengths to explain that I will in fact not be getting better, as is the nature of the chronic of the illness.

After my most recent plethora of tests I was told that they found nothing abnormal - and given zero explanation as to why my entire body seems to be subtly but incessantly fighting a losing battle -but would be put on a treatment plan. Of course, I missed my appointment.

Queue letter informing me of telephone consultation scheduled for eight months from now and... a bunch of terms I had not been introduced to plus a full diagnosis of a thing no one had bothered to confirm with me and blah blah blah in my blood results.

I am increasingly uncomfortable, exhausted, and struggling to muster the energy I would like to meet my days with.

I just experienced one of the best weeks of my life but I would be lying if I said that the overwhelming fatigue didn't trigger some real deep-seated concerns that I'd been burying for a hot minute.

The past week has taught me that daily excursions, no matter how gentle, deplete my resources to an extent I could never have anticipated. And this now actual diagnosis has demanded that I consider the relation of other elements I had been hoping would just... right themselves, I guess.

In being honest with myself I acknowledge that, since the initial noticeable onset in 2018, I have been putting things out of mind and simply plodding on through the daily ordeal in the naive hope that my health will somehow improve. It has not.

It has only declined.

My lack of faith in my loose diagnosis is waning and I have recently realised that, even with an actual diagnosis now, the damage has been done. I have spent the past few years clueless and desperate for some clear term of some thing that I have so I can tackle it.

I finally have a singular focus and it feels like a lazy decision - some kind of "we can't explain half of what you're experiencing but this test result now aligns with this thing so we can give it this label" - and I'm sat here wondering how they can leave me with these life sentences built of unexplained and poorly investigated terms.

I don't feel myself anymore. Which may be a bit of an exaggerated statement but...

The person I've always been, quick to get up and go and on it til the last person drops.

Gone.

Now just me struggling to leave the house because sorting breakfast and doing the dishes left me so depleted I'm desperate for a nap.

Now so drained by any venture outside of the house that I am denied the choice to rest, my body demands it and takes what it wants.

But the worst part of it all, the constant aches, fatigue and subtle discomforts which aren't enough to render me immobile but insistent enough to set my every waking moment on edge.

I'm tired. But I guess I gotta get used to that.

[sleepycatmama]

I don't know if it's the Fibromyalgia or the UCTD, but man, I hate the night sweats. They are really bad.