NORTH EAST UK Me/cfs/pots

30/07/2026

Eee well I've had a proper 💩 few weeks!

I did think my conditions were the cause of my recent extended GI issues.

But I had a FIT test which came back POSITIVE and was put on the urgent 2 wk pathway for a colonoscopy.

My procedure was on Monday, but regardless of eating very little over the last few months because of constant nausea, the bowel prep had failed, scoring a ZERO and they couldn't complete it. So have to have another with extended prep.

I was also urgently referred for an abdominal CT scan. Got a call yesterday to go to the hospital today.

Really hope they can give me some answers today, even just a little to settle my mind! 🙏

20/07/2026

07/07/2026

🎉 Yeyyyyy!! Low Dose Naltrexone arrived yesterday!

So excited to trial this to help manage my symptoms and not just

"Learn To Live With It"
or
"Talk About My Pain"

as suggested by the NHS! 🤨

Praying I see some good results 🙏

16/06/2026

I've finally booked my online consultation for Low-Dose Naltrexone with Dickson Chemist.

After my MSK appointment Thursday gone I was also diagnosed with Fibromyalgia to add to ME/CFS, PoTS & endometriosis and the only thing the NHS could offer is group therapy to talk about my pain!! 🤯😡

I'm also still seriously considering paying the £250 consultation fee to see Dr. Gupta at Yorkcardiology because I honestly feel the NHS are a waste of space when it comes to treating all of us that suffer with these types of chronic conditions.

It's truly appalling!

11/06/2026

So I recently took part in a study to Evaluate the Role of T-Cell Dysfunction in Patients Who Present Symptoms Associated With Long COVID, Lyme Disease and Myalic Encephalomyelitis / Chronic Fatigue Syndrome headed by Dr Nigel McCracken.

The results are quite interesting as it seem that my immune system when challenged may not be functioning as efficiently as it should be.

If your clueless like me - think of your T-cells as soldiers.

☠️ When a virus enters your body
⤵️
👀 The soldiers see the enemy
⤵️
🔪🚫 They attack it.
⤵️
🤓 Then some soldiers become memory soldiers so they remember that virus in future.

However, my baseline levels are already high at 60 (should be between 27-44) & seemed to be already switched on ready for war!

Yet, when they are challenged via virus their levels are disproportionate at 1945, they should be between 2370-3126 🤔

ME Advocates Ireland - MEAI Action for ME ME Association

11/06/2026

Invest in ME/CFS research and care

05/06/2026

05/06/2026

Finally a bit of good news!
I've been awarded Enhanced rate daily living & mobility.

Just ordered myself some new wheels to help with the leg struggles, pacing & also the anxiety of how getting to A to B will have a knock on effect.

Though being in a chair is a whole new worry, hopefully now I can have a little bit of a life.

So if you happen to see me DON'T JUDGE......Not all disabilities are Visible!

18/05/2026

The cheek of it!!

I queried this because I've pushed for pregabalin and never been prescribed it, got a phone call today from gp surgery, apparently gp says he wrote I cant be prescribed pregabalin!!! 🤣

If that wasnt bad enough he goes on to say "medications caused significant brain fog & fatigue"

No Love!! That was there long before any of the meds that i actually have taken!

I even gave the man a thank you card prior to this for feeling like he actually listened and cared!! 😢

No the fu***ng wonder I cant get any meaningful health care with my chronic conditions.

M.E. Support

06/04/2026

So today, I've let my hair down, fought tooth & nail through the pain 💪 and ended up being 'OUT-OUT' first time in many of years!

And I've loved it, felt like my old (younger/healthy) self and I've had so much fun dancing the night away!

Yes - I know I'm going to pay for this [BIG STYLE] But, the way I look at it is.... I'm not going to get to my death bed and think, I wish I stayed in & limited my life more 🤷‍♀️

No matter what s**t, life throws at you and blah blah (mind has gone blank, cant remember the end of the saying lol!)