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Community Voices

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

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Community Voices

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

5 people are talking about this
Community Voices

(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

2 people are talking about this
Community Voices

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

6 people are talking about this
Community Voices

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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Community Voices

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

<p>I am looking for a new mask. I broke my big mask and they are closed right now no masks available. Any suggestions???? <a class="tm-topic-link ugc-topic" title="mask" href="/topic/mask/" data-id="5c3b46087a369600c991c7ea" data-name="mask" aria-label="hashtag mask">#mask</a> <a class="tm-topic-link ugc-topic" title="immunosuppressed" href="/topic/immunosuppressed/" data-id="5e6fe776bfb44500d6f94dc2" data-name="immunosuppressed" aria-label="hashtag immunosuppressed">#immunosuppressed</a></p>
4 people are talking about this
Community Voices

I have to take out a lot of recycling that I have been shredding since the safe distancing started. I am pretty much in panic right now that somehow I will catch this virus this time outside. The people in my building just don't get the whole social distancing, clean your hands, don't cough right into the air and just not being aware or caring that you are probably making us all sick. I kind of wonder if this is going to be a really long lasting panic even after the ban for going out is lifted.. The fear is real. I could get really sick. This is just so hard.

Community Voices
7 people are talking about this
Community Voices
Community Voices

#COVID19 can I go to "senior hour" at the grocery store?

Okay, so I'm not a senior or #immunosuppressed . But I have #Narcolepsy and #PanicDisorder , and between the two messing with my body I usually get a bad case of the flu once a year, and im sick A LOT. (Or, does that have something to do with my #elhersdanlossyndrome ? also have a history of pneumonia, bronchitis, and childhood asthma. So I'm not exactly a healthy 26 year old ready to fight off #COVID19 like it's the common cold.
What do you all think? Can I go to the shopping times for people at risk? Or am I putting people more at risk than myself in danger if I go?