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Advice needed

Any advice when you have to be in the office but you're immunocompromised?
My coworker has been hacking and coughing on the other side of our partition all week; I caved on Tuesday and started masking again because otherwise I was too anxious to focus on work.
Help? #Advice #RheumatoidArthritis #immunosuppressed #Immunocompromised


Well the Hydroxychloraquin isn't doing much for the arthritis, but it sure made the plantar warts on my feet come back 😮‍💨 #RheumatoidArthritis #immunosuppressed


I wish people would take my weakened immune system seriously…

All my life, I’ve caught bugs, colds and flus very very easily. But in the last ten years or so, it’s been much worse. Because of this, I have every vaccination available to me. The flu one, the pneumonia one, the meningitis one, the hepatitis ones, and five COVID vaccines. I avoid sick people like they literally have the plague.

But then I get my sister and nephew that come over, and the gremlin will crawl all over me. Which I don’t mind. But then just as she leaves she tells me that he’d been throwing up ALL NIGHT.

I run and wash my hands again (I do this repeatedly when he’s here cus my nephew likes to slobber). But, right on schedule… 3am this morning I wake up and had to sprint into the bathroom and even then, I didn’t make it to the toilet to be sick. I projectile-vomited all over the sink. I then spent nearly an hour curled up on the bathroom floor, shivering and being sick. My stomach muscles are so sore. My head hurts.

She KNOWS I’m immuno-compromised. Yet she repeatedly pulls this crap when she feels lonely and wants to spend time with someone.

I’m just really fricking frustrated and sore. 😞

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #NAFLD #LiverDisease #Diabetes #InterstitialCystitis #Migraines #ImmuneSystem #immunosuppressed #StomachBug #stomachflu

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Does anyone else get really emotional when they're unwell?

I know that a lot of us feel unwell most of the time. That probably wasn't a very well phrased title. But what I mean is... Do you get easily upset when you have a cold/flu/infection?

As an example, back in May I picked up a very nasty stomach bug (that my baby nephew ever-so-lovingly decided to share)... And for the entire day, I just kept breaking down into tears. For pretty much no reason. I don't know if it was frustration or if I'd just had enough... But I've noticed it happens every time I'm unwell.

I've had a cold for about a week now (several COVID tests have come back negative, despite me being certain this isn't an ordinary cold), and I just keep breaking down at the drop of a hat. My sister brought me a slice of my favourite cake from my favourite bakery and I burst into tears. The level of emotion is crazy. I don't like crying even when I'm feeling okay, so when I suddenly start sobbing, I get angry at myself and then usually end up crying more... I keep wondering if it's simply exhaustion? I'm immuno-compromised, so what other people would call a mild illness, is usually something that knocks me off my feet.

I'd just like to know if there's anyone else out there that's like this? And if you know of a way I could maybe minimise the tears? I feel so silly.

#chronicillnesswarrior #ChronicPain #POTS #EDS #NAFLD #LiverDisease #Diabetes #InterstitialCystitis #cold #Flu #BPD #Migraines #IBS #exhaustion #tired #emotional #unwell #immunosuppressed


Getting a little frustrated

Sometimes it feels like people just don't get it. I'm on immunosuppressive medicine, my immunosuppressive isn't too severe but still,, I am at a high risk. I went to Thanksgiving dinner with my extended family last night. At the end of the night my grandma says, "oh, will I would hug you, but one of my coworkers has covid". I'm glad we were leaving cause I probably would have blown up at her. At the end of the night! That's when she decides to drop the bomb! she knows I'm immunosuppressed, and still. Obviously we weren't wearing masks cause it was a small family gathering. People don't seem to get that by being around me and possibly being a carrier of any disease (not just covid) they are putting me at risk. I can't tell you how many times people have had a cold or flu and not told me and been near me while sick. #immunosuppressed #ChronicIlless #Lupus


Feeling lonely and forgotten about

It seems people's lives are back to normal and the pandemic is forgotten about. Meaning those of us who are still staying at home to avoid getting ourselves or loved ones ill are also forgotten about.

My work have been organising social events, none of which have felt safe enough for me to go to. Inside, lots of people, no (or limited use of) masks. And now my team are organising a team event and a lot of suggestions were inside. Well miss party pooper over here had to Vito all of those. I will not go to anything inside. Only outside and socially distanced, and to me that still feels like a push.

I feel forgotten about. Sidelined. And don't even ask when I last properly spoke to "friends", because I can't remember. I moved mid-pandemic and can't go out and meet new people. Those I moved away from seem to have moved on and forgotten about me. I feel so isolated and alone 😔

#ChronicIllness #ChronicPain #ChronicFatigue #Arthritis #AnkylosingSpondylitis #axialspondyloarthritis #IrritableBowelSyndromeIBS #immunosuppressed #lonely


(Context: i am currently fighting a cold which has always triggered my asthma. Also my nightmares are more like hallucinations thanks to narcolepsy)

Woke up after a string of vivid nightmares about my cat dying, crawled out of bed to have medicine, coughing all the way. I feel like I've had maybe 3 hours sleep but this should fix that, right?
On getting back to bed I rubbed my nose the wrong way and broke a scab so my nose started bleeding. While I was still coughing. At 2:35am.
#sotired #immunosuppressed #fml


I hate being immunosuppressed

I had a cold three weeks ago; last week was the first time I felt almost back to normal. Then a toddler sneezed on me at work a few days ago and now I've woken up coughing and my throat feels weird.

For the parents its "cute" when their toddler sneezes. They just coo at it.
For me it means five days in bed, cancelled classes, missed work and three weeks recovery. And potentially putting other immunosuppressed family at risk.
#RheumatoidArthritis #ChronicIllness #immunosuppressed #Fuckthis #InvisibleIllness


Tough 10 months

#PsoriaticArthritis #immunosuppressed #Psoriasis #InflammatoryBowelDiseaseIBD
The past 10 months have been beyond anything I have ever experienced! The last time I left the house to be in the world, in a store or amongst people was March 9, 2020. Since then I have existed only within the four walls of my house with my two kiddos and my partner because of my severe PsA and being immunocompromised because of the meds for it.
Some days I’m mad, others I’m sad or frustrated. Some days I’m so beyond grateful and happy I’m brought to tears. Other days I’m in so much pain because my body has used up all my meds I can’t get out of bed.
The last 10 months have shown me that some things change dramatically while other things stay exactly the same! I try to be grateful everyday but it’s really hard because some days I just want to scream!
The cold weather is coming so sitting outside is damn near impossible!
I know I should just keep thinking that I’ve made it this far I can keep going but I don’t know how much more I can do!
And what does the future look like for someone like me? Am I ever going to sit in a restaurant again and not wonder if I’m risking my life? Am I ever going to be able to go shopping and not wonder if that is the day that I get the most sick I have ever been in my life and not recover?
What does the future look like for my family? Am I ever going to be able to go on vacation again? And yes I’m grateful to be alive but what if can’t live either??
It’s been a tough 10 months... how many more to go...

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I am looking for a new mask. I broke my big mask and they are closed right now no masks available. Any suggestions???? #mask #immunosuppressed