Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦

Wife, mum, Severe ME, MCAS, LC, MALS, hEDS, POTS, dogs, peace, love & forgive ❤️ #Chronicillness #takingthepip @MEWarrior1.bsky.social

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

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.

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@arianek Absolutely 💯

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@subversivepsych @AndrewMeffan Thanks. I’ll investigate 😉😂

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@subversivepsych @AndrewMeffan It is—but I make the most of what I’ve got.
When MCAS, MALS, POTS, PEM and hEDS all flare together—it becomes very challenging.
I’m desperately waiting for my MALS operation to decompress the coeliac artery as it causes immense abdominal pain and prevents you from eating.

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@KSchnickelfritz This hit me:

“When I stopped making plans, it got a lot easier. Now every day is the same, but I can manage that.”

I’ve given so many tickets away!

But as you say—life is easier when we stop making plans. It was bittersweet: freedom vs grief.

Well done, Kirsty, and thank you.

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@AndrewMeffan @subversivepsych 2/ but that’s causing constipation that is affecting my MALS which was triggered after a horrendous UTI summer ‘23
There’s not enough interest in complex chronic illness. It’s not coincidental people with LC get POTS, MCAS, vascular compressions, ME & triggers other illnesses 😔

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@AndrewMeffan @subversivepsych Dr C Taylor started me on antivirals, but after 2 tablets I had a massive MCAS reaction which lasted over a month. Bc of her situation I’ve not been able to speak with her since. It feels like the virus is still working inside my body.
My ferritin is very low so I’m on iron 1/

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@AndrewMeffan @subversivepsych 2/ now it feels cemented in! Like so many, I now have POTS & MCAS plus dx with hEDS causing unstable cervical & lumbar spine. That was triggered 2 weeks after Covid infection no.5!
I can’t stand in one spot more than a minute. Sitting up causes nausea & dizziness despite meds🤷‍♀️

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@AndrewMeffan @subversivepsych I’ve had a GP whom I respected say Covid now is no more than a cold!
2 covid infections back to back have kept me 95% bed bound for 3.5 years. I’ve had covid twice since then & in total 5 infections from March 2020- May 2025
I did already have severe ME at the lighter end but 1/

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@kris100leary @Sabrina_Poirier So sorry to hear this.
I take my husband bc lots of male doctors prefer to talk to him than me! The misogyny that still pervades healthcare is horrendous. Not all males are like it but when that God complex strikes— it hurts.
I hope your daughter is receiving care 💛

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@KSchnickelfritz Yes, my carer & I plan to start this with emphasis on my clothes which have taken up so much space!
Fat v slim clothes 🙄🤦‍♀️

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@lsthart @julia_doubleday Yes! I’m more flexible now at the age of almost 56 than in my twenties. I have to be careful stretching though due to neck and lumbar instability.

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@lsthart @julia_doubleday I suspect we’ll never fully know the extent covid has affected our health.
I feel LC has got me stuck in a deeper fatigue with no signs of improvement. It was infections 2&3 being 3 months apart that has caused me to be predominantly bed bound consistently for the past 3 years 😔

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@lsthart @julia_doubleday 2/ What other things have you noticed or other pts reported since having COVID?
Because I only got dx last summer it’s hard for me to tell. My spine is definitely the worst change plus MALS 🤰 😩

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@lsthart @julia_doubleday I’ve noticed the skin on the back of my hands is paper thin and my blue veins are very prominent. They look like I should be 90 yrs old. No tearing but I bruise easily.
My spine, in particular cervical, is extremely unstable due to ligament laxity. Hip joints & knuckles hurt 1/

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@lsthart @julia_doubleday Sounds painful.
I’m dx with LC too & it’s really affected my level of fatigue— made it more rooted within me.
I’m not sure how it’s affected my hEDS other than it may have triggered the pain from cervical & lumbar instability. Symptoms overlap.

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@Sharn3960 It’s good because I can do it lying down on my bed although sewing legs and arms on to my latest project was challenging in that position 😂

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@KSchnickelfritz @BillieHill64 Luckily I rarely get given suggestions anymore. I think everyone is tired of it & have moved on 😂
I think chronic illness in general has this type of response.
One thing I do hear a lot is, “I hope you feel better soon”🤦‍♀️

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@Sharn3960 Definitely not hated! I think she’s a cute little duck for an equally cute little girl.
I love the wings 🪽 and the colours. I think that’s why I love this one (photo) so much too. The wings really stand out. You’re so clever 💛