Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦

My Story…… I wasn’t diagnosed by our county’s head of ME/CFS services despite seeing him privately in 2012. He said I had fibromyalgia which I agreed but I knew that my fatigue began after an infection along with several viruses inc Epstein Barr.

Excellent article!! open.substack.com/pub/brittanija…

@katkatski Just wish we felt as bright as the flowers 😂 xxxx😚

@ME_Bev7 Beautiful! 🤗 Happy Thursday 🧡💛🧡

To all my ME buddies, here’s a photo my husband has just sent me of our wonderful orange eschscholzia and red poppies! Happy Thursday 🧡💛🧡

@Monica55dzrh Well I’d love it!

Question: if you are invited to someone’s house for dinner would you consider garden flowers in a jam jar like this an acceptable small gift? My host says don’t bring wine or food, I don’t like shop flowers, I can’t bear being empty handed…

@ABrokenBattery @davidtuller1 @DrOscarDuke 400,000???? 🤦‍♀️

BBC Morning Live covered the new £4.75m UK government funded #MEcfs DNA study yesterday, which will sequence 6,000 samples as part of the wider DecodeME project. Unfortunately @DrOscarDuke said Chronic Fatigue Syndrome is “probably the best way to describe” the illness.

@DiaryofaSickGrl 4/ Yet people talk of depression to explain physical symptoms which actually minimizes the illness of depression! As time has gone on the idiotic comments dong hurt as much but rather peoples lack of empathy does. Thats why I’m so grateful for the ME community 💛

@DiaryofaSickGrl 3/ but why don’t people educate themselves on the word chronic? I do have sympathy for people to a certain extent but why not inform themselves on ME & xyz before throwing the depressed card into the mix. I do get depressed but it’s because of the physical illness. 3/

When I was first struggling with chronic illness but didn’t have diagnoses yet a friend sent me an article about how depression could cause physical symptoms and didn’t understand why I didn’t find that helpful at all. One time she also asked what my husband “thought about all this” and didn’t understand why I was confused by that question. Like what do you mean what does he think of all this? He’s sad I’m ill and is supporting me as best as he can…

@subversivepsych My daughter was a vegan but after she went into remission following chemo for Hodgkin’s lymphoma in Jan ‘21 she just wasn’t getting her energy back. After doing her research she made the decision to eat meat etc again. She is now in her 6th of remission and full of energy!

Very sad outcome of B12 deficiency dailymail.com/news/article-1…

@Naomi_D_Harvey Dr T diagnosed me with LC last year. I’ve made no progress from back to back covid infections 2022 & 2023– just 3 months apart. Had covid twice since then too. But is LC a diagnosis for life? For me, it’s lowered my ME baseline and I’m still deteriorating. LC is just more ME 🤷‍♀️

Long Covid is not lung damage Long Covid is not diabetes Long Covid is not pericarditis Long Covid is not POTS Long Covid is not MCAS Long Covid is not tinnitus Long Covid is not ME Long Covid can be any, or all, of them.

Please add your name to an important open letter from Long COVID Advocacy, addressed to the @rcpsych #Done ✅ #FightForME #FightForLC

@I_need_a_razor @LongCovidss2022 2/ It’s not the same, I know. Learning to adapt to this new way of life is incredibly challenging 💯 There will be bad & sad days, but it’s taught me to find joy in the smallest things. Thinking of you 🙂

@I_need_a_razor @LongCovidss2022 You’re right, there’s nothing positive about this disease. I’ve had ME for 17 years, plus Long Covid & hEDS. One thing that’s helped a little is finding a hobby I can do while bed bound. I know it feels like Groundhog Day, but trying to vary the days slightly can help mentally 1/

Still can’t comprehend this is my life. Just trying to survive thru the day so I can do the same thing tmm. Never could imagine a disease like this existed even tho it was right in front of my face for decades. I often wonder if I’ll get to experience life in full capacity again

@DiaryofaSickGrl I’ve thought about it as I’ve gained 3 stone in the past 3 years due to eating too many calories for someone whose bed bound! But I’m afraid it’ll make me more ill. I also have a very slow gut. Boarderline gastroparesis. I’ve severe constipation. I was 8 stone 11 now 12 stone 8

I’ve lost 11 lbs. I’m moving more, eating better, in less pain, and feeling less inflamed. My mast cells seem more stable. Not perfect by any means, but better than they were. Food noise is much less noticeable…

@KhanSaba1278 Stunning! Resembles a stain glass window. Tell her she’s very talented 💛

My grandma is 68 and finished this quilt yesterday. My always rude grandpa said it looks like “a mess of colors”, now she's upset but i said i would post it here and she would know how amazing her work is...."

@kirstler31 Snap! We moved here 10 years ago. Sadly the move followed by visiting universities made me wheelchair & house bound, and a year later bed bound. I’ve had periods where I could do more, but never for long. I’ve never really gelled with this house. I’m more of a spectator ☹️

I miss waking up in the morning, going downstairs, opening the blinds, making myself a coffee and chilling on the settee. Never been able to do that in this house or in years. It’s the small things.

@JulesAHouston @KSchnickelfritz @TraceyABurgess Hugs to you too my friend 🫂💛 xxx

@ME_Bev7 @KSchnickelfritz @TraceyABurgess 🫂💙

In the back of my mind there is a small part of me that thinks this isn’t real and I will get all the time back that I missed. My 20s and 30s. My late 40s and early 50s. That I will get to make those choices again and choose a different path and visit other places. #ME

@hopefullizzy It’s amazing what we actually crave for when everything is stripped away. I want to bake & ice a cake, sit outside in the sun without PEM, host a big meal for ALL of my family, walk my dogs, just go out in my wheelchair. All simple everyday things. Beautiful words Lizzy 💛

Writings from my heart. #writing #poetry #mecfs #MEawarenessweek #millionsmissing

@amiandlife My GP prescribes Famotidine but she did receive a clinic letter from the prescriber.

How do private prescriptions work? For example, I’ve been paying private for Famotidine, but really want to try and get it on the NHS because we can’t afford all of my meds. But will they prescribe me it? Ugh this is all so confusing. #mecfs #mcas