I know I’ve blogged about fatigue before but it’s apparent there is still misunderstanding about it

There’s a scale: regular people tiredness, fatigue, chronic illness fatigue, chronic illness exhaustion.

So when I say “I’m tired” it generally means I have chronic illness fatigue.

The problem is fatigue affects my balance, coordination and gives me night sweats which mean I don’t sleep as well and walking about becomes harder taking more effort to do things.

I generally only can manage to do one thing a day due to lack of energy and if something big is coming up I’ll have a “do nothing day” before it.

It has become apparent over the last 5 months that some people don’t understand this with the response on a “do nothing” day of saying several times “so you really don’t want to do anything today?” Along with not believing or accepting I can only do one thing a day and pressuring me to do more.

This week my parents moved house so I had their dogs for three nights and four days. It has utterly exhausted me even if I did love having them. I can’t risk walking about because I’m so tired my balance has gone and my physio had the joy of seeing the effect on me from Wednesday to Friday.

Today she kept telling me to lower my shoulders but understood they were high from being tense and tired so I may not have been able to lower them.

When the dogs were collected I admitted how exhausted I was by them and the response “were tired too”.

There’s a difference between your tired and my exhaustion. Mine leaves me emotionally drained and ready to cry at anything

For my Crohn’s Disease and Arthritis I have Infliximab every six weeks. Most people are on it 18 months, I’ve been on it over ten years.

It’s desired effect has reduced so in the last few years so the amount has been doubled and the time between infusions shortened.

Clinical guidelines say a level of 8 is okay but above 12 has shown to have the best results and unfortunately as expected my levels have dropped from 13 over time so we’ve put a plan in place for when Infliximab stops working.

I have previously tried a drug called Ustekinemab but unfortunately it didn’t help my arthritis pain so that’s a no go so we have a plan in place for a different drug (can never remember it’s name) for when Infliximab stops working and I see my consultant in 6 weeks so we’ll discuss it further.

25 years ago I had a stoma after a subtotal colectomy. I had a stoma 18 months or so before insisting on an ileo rectal anastomosis because pooing into a bag age 12/13 whilst at boarding school with bitchy girls was horrendous.

My journey to my first big op was interesting. Symptoms of diarrhea and weight loss started age 7. I distinctly remember going for a colonoscopy and the nurse telling me “you’re very young to be here”.

And so began 5/6 years of medication, hospital appointments with a Gastroenterologist, phone calls with the gastro nurse and several blood transfusions to replace the blood I lost through diarrhea.

None of it worked and in the summer of 2000 the consultant recommended that the best next step was a colectomy which after years of feeling like crap I was vaguely all for but adamant the stoma would be temporary.

I was sent for a second opinion at GOSH and I have to say my experience and memories are not great.

They placed a nasal gastric tube for several days and no one believed when I said I felt sick. I wretched and the tube that started down my nose looped out of my mouth before continuing down my gullet. They just fed it back down and didn’t even give me anti nausea meds.

They did a colonoscopy and took biopsies which then made me bleed non stop and didn’t heal.

I was too tall for the bed they gave me.

I was desperate to be out of there so lied to them that I was fine so I could go home (that was not a fun journey).

A short while later I was admitted to Oxford John Radcliffe hospital and had an emergency collectomy.

Due to being so ill when I was admitted it took 3 weeks to be well enough for discharge with my new stoma bag and head home.

18 months later I headed back to hospital for an ileorectal anastomosis. Due to being well when I went in for surgery I was sitting up in a chair 24 hours after surgery.

Subtotal Colectomy

A subtotal colectomy is surgery to remove most of the large bowel (colon) while leaving the rectum intact, typically for inflammatory bowel diseases (Crohn’s, ulcerative colitis).

Ileorectal anastomosis

Ileorectal anastomosis (IRA) is a major surgery where surgeons remove the colon (colectomy) and then connect the end of the small intestine (ileum) directly to the rectum, 

It’s been a long time but I’m back and ready to do some sharing!

Today Boris announced the scrapping of the self isolation law leading to me sending an email to No10 for the first time ever

“Following on from the prime minister announcing today the scrapping of self isolation rules for those who test positive to Covid-19, do I assume correctly that all those of us who have made no antibody response at all like myself and others with primary immunodeficiencies and other conditions will be able to receive the antibody therapies prophylactically to prevent serious illness when those testing positive are allowed to walk around shops with no mask infecting anyone they come into contact with.

If not then the feeling amongst antibody deficiency patients that we are seen as second rate citizens and an inconvenience during this pandemic is true and highly disappointing.”

I have 3 covid vaccines and made no antibody or T-cell response to any of them. I have not sacrificed two years of my life staying inside for the government to decide I really do not matter. The scrapping of self isolation rules without giving those of us who are immune deficient the antibody therapy needed to keep us safe is an appalling thought.

Even those who have responded to the vaccine do not want those testing positive wandering about being able to infect anyone and everyone and I really do not want the risk of hospitalization or death from being infected myself.

So I would urge everyone to contact the cabinet office about this decision and what it means for the most vulnerable in society.