Coronavirus Disease 2019 (COVID-19)

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I’m new here!

Hi, my name is isamae13. I have been dealing with chronic illness since I got mono in 2014. I have had three active mono infections over the last three years. Several surgeries and deal with chronic pain and chronic fatigue. I have been making improvements in the last 3 years since COVID helped me to slow down but also as I entered the professional world and got married I am realizing that my bad days are harder when I do have them. I’m needing extra support of people who get it.

#MightyTogether #ADHD #Fibromyalgia #chronicfatigue #pots #Migraine

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2.5 crap months, and at least another 3 to come... don't you love medication brand switches for no reason 😬

My rheumatology department switched me from Imraldi to Yuflyma at the end of January. They're both adalimumab but as they're proteins the structure isn't exactly the same. Having said that they *should* work the same as the active site should be the same. Basically yuflyma is cheaper so it costs the NHS less. I was willing to give it a go as its the same medication, although I knew there was a risk it wouldn't work, and well it hasn't... rant incoming!

The last 2.5 months have been sh*t. I had a flare in January before I switched brands- I was getting about 2 flares a year and this one was expected. It was treated with oral steroids. Tbh this flare wasn't too bad as the Imraldi was still working in the background.

Then I switched to Yulfyma. 5 weeks after the last flare (and last Imraldi dose), bam another flare. Again treated with oral steroids which took a lot longer to work than usual, probably because the Imraldi was very low in my system by this point. Rheumatology agreed I might need to switch back, or it could just be an effect of switching brands, so we'll revisit it at 12 weeks of the new brand (it takes 12 weeks to build up in your system to get the full effects).

Well, now 5 weeks after the last flare I'm in another one 🤦‍♀️ I'll contact rheumatology on Monday, get more steroids and switch back to Imraldi. But that also means facing another 3 months of this flare cycle once I get Imraldi back and that could take a little while.

So I'm facing a minimum of 3 more sh*t months and I'm fed up already. There's also no guarantee Imraldi will still work 😫

That 3 months of known crap health overlaps with the spring qualification series for English and British trampoline gymnastics where I compete in the disability category. How utter *insert string of expletives here*. I've been working so hard for 6 months to prep and build up to the season and make improvements to my routines and now it feels like that's all gone out of the window. I had a crap season in 2019 before the pandemic put a halt on everything, and last year was my first season back that was also marred by an injury and then covid. Can I not just catch a break and have a good season for once? 😡

Oh and did I mention that I've got a 3hr drive tomorrow to work from a different office next week? Why do flares always happen at the worst possible time. 😮‍💨 Next week is going to be hell but at least I'm closer to my rheumatology department.

So yeah 2am, I'm utterly broken, fed up, anxious, low, and at my wits end. I don't know what I can do right now to feel better as I've already tried everything. Oh and did I mention I want sleep? Chronic pain sucks.

Somebody just please make AS piss off now and leave me alone for once 😢

#ChronicIllness #ChronicPain #axialSpondyloarthritis #AnkylosingSpondylitis #Arthritis

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I'm new here!

Hi, my name is Bbuzzb. I'm here because I have had fibromyalgia for 30 years, depression most of my life and Long Covid for 4 years. Since suffering from long covid I have also experienced a form of grief for my previous life. About four and a half years ago I decided to go vegan and the effect it had on me was amazing. I realised that I really had been suffering with fibromyalgia for all those years (I had doubted myself sometimes). I had so much energy. Then I got long Covid and am back to chronic fatigue etc again.

#MightyTogether #Fibromyalgia #Depression #PTSD

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I’m new here!

Hi, I’m CRound3.
I have Long Covid and it has neurocognitive impacts— making my anxiety and OCD worse than it was before. Just here to share and to learn from others.
#MightyTogether #OCD #Anxiety #Depression

3 reactions 4 comments
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Failure

I’m feeling like a failure. As a parent. As a person.
My son’s father as some of you know hasn’t been in my son’s life and his father enjoys making me feel guilty about that. I agree with the saying, “love your children more than you hate each other.” I feel he should spend his time trying to better himself instead of blaming me for his own flaws.
Then when my son was 6, his grandfather died. Those two were best friends. They had a great relationship. When that occurred, COVID also struck, school was shut down so therefore we saw what little family we have less.
My son felt like his grandfather left him along with his father. And everyone else. Hard for such a young child to comprehend.
During all of that, I found out the person I was with was living a double life. I stayed and endured years of abuse. Emotional, mental, psychological, physical. I lost myself for the next 5 years. I struggled tremendously. I have come away with many diagnoses.
That said person moved out a but over a week ago.

I feel I have failed myself and my son. I know for me I feel I can’t find someone to love me for who I am. I feel defeated with everything I attempted to accomplish. I failed myself for feeling stuck for so long.

But I feel I failed my son because his father isn’t around. His grandfather died. And now this person is also gone. My son hasn’t had a male figure who has been there consistently. I have been the only consistent person in his life. Unfortunately he saw me struggle for years but I never stopped trying for him and never stopped loving him. I did what I could. I attended everything he had going on. I would drive him to school or pick him up. I make him breakfast, lunch, and dinner, plus snacks. We have tea time together. I help him with his homework. I support him with everything he wants to do. Drama club, chorus, band, unicycling, etc.
I feel I’ve showed up in many way but feel I failed due to the lack of male influence.

But he will be okay with just me, right? He will always know I love him unconditionally no matter what. Even when his father threatens to make him hate me later in life?

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❤️‍🩹

I’ve hesitated to share this because, for awhile, it was quite emotional for me whenever I saw the drawing. (I’m able to handle it better now.) My daughter drew it for her Granddaddy when he was in the hospital with COVID and we started to realize that he wouldn’t be coming home. She also wrote a very thoughtful and loving letter that my husband somehow managed to get through reading to his father. The drawing hung in the hospital room while he was there. ~
My daughter processing those tough feelings and expressing her love this way was so impressive to me. She found a very personal (to herself and her Grandfather) way to deal with a very sudden, sad and difficult experience. The drawing and the letter helped my husband, me and our other 2 children to process and grieve too. ❤️‍🩹
~
#Grief #Relationships #artastherapy #MentalHealth

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Covid Meetups

Want to find more people still practicing Covid precautions who want to socialize and connect?! Was surprised to see how much this resource has grown:

covidmeetups.com

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