Covid Vaccination and ME/CFS

On Thursday last (25 Feb 2021), I got my first dose of the Covid vaccination. My age put me in Group 7. My local GP had refused to place me in Group 6, despite sending them information based on the template letters from the ME Association, however, in the end I didn't press them on that after they'd revealed that, "Your Husband is recorded as being your Carer and so he will receive a Covid vaccination when we visit you." 

They were doing home visits earlier for housebound patients: I have previously informed them that I am mostly housebound and would have needed wheelchair and PA assistance otherwise to get to any appointment. So far, so good.

Background: Among a veritable Smörgåsbord of invisible illnesses, I developed ME/CFS after having Glandular Fever in 1973. Thought everyone was as knackered as me - until, after a number of other illnesses and events - I became very unwell in 1995, was rushed to hospital and never got better, settling usually at Moderate to Severe, on average at 80% impaired, on this Myalgic Encephalomyelitis Disability Scale. These days, I spend at least 23 hours a day lying or reclining in bed. Even sitting up is too tiring and causes my symptoms to exacerbate. Mostly, only travel as far as the bathroom. Going downstairs is like an excursion!

Anyway, I got a phone call on Wednesday that I initially ignored as it came from a Private Number (NHS what do you think you need to hide?), but thankfully they left a message so I called back. They said they could come the next day. 

So I've decided to also share my experience, not to discourage anyone - on the contrary, NONE of us is safe, until ALL of us are safe - so you can be prepared. 

Nurse came about 10 am on Thursday morning and I didn't even feel the jab. She warned that my arm might be sore in the area and made a point of asking which arm I wanted it in. About an hour afterwards my whole left side felt like it had been in the freezer, which was weird, but not terribly unpleasant. It was fine once I put on a second hoodie and had my lunch. I felt a bit sicky, slightly spaced out (more than normal) and had a fleeting headache, but those were soon gone. I was warned that I might feel fatigued, but I wasn't sure I'd notice. 

Before I went to bed that night I took a cold and flu relief oral solution - it's the only way I can partially tolerate Paracetamol. It still completely constipated me for two days, which did nothing to help! But I did sleep (unusually).

Friday morning I woke up unsure whether I was alive or dead. OK, hurting: must be alive. With Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) I'm used to my body overreacting to medications, but this was extreme.

First thing on Friday morning I was so cold and my hands and feet were so cold it took 3 hours under extra covers, with two cats, two hoodies and with a heated blanket on full to even begin to warm up. Then I felt like I had a fever. 

I ache all over all the time, but this took it to the extreme like sports strains. My legs felt like they had polio and couldn't even get to the toilet without help.

And the migraine-type headache was so bad I couldn't even open my eyes to or lift my head off the pillow without feeling sick and dizzy. I couldn't even bear to watch moving pictures on TV. For 36+ hours all I could do was keep waking up to pee, drink more water, then drift back off to sleep again, rinse, repeat.

I've even had to lie flat after drinking plain water to prevent me bringing it back up again, because it made me retch, but I needed to drink because my pee was hot. Cleaning my teeth, the toothpaste made me retch. Can't even face tea. The only thing I was able to eat Friday was a bit of dry toast - I don't normally eat bread, but it was the only plain thing we had in the house that I felt I could stomach. A small, sugary treat just tasted sickly and made me nauseas and I immediately started to get a headache, like a sugar rush headache or hangover - not fun! I still can't eat and drink normal food and my stomach is in knots. 

Sunday morning had my first shower in days and had to lie down afterwards because it made me feel ill. The soreness from the jab in my arm is still off the scale and I can't lie on it even now. On Friday, I couldn't even use that arm.

Some of these are my normal symptoms of ME and the jab has just caused a huge crash. Everyone reacts differently, so hopefully none of this will apply to you, but at least you can be prepared so you can be as comfortable as possible. Gather things together in advance like extra blankets and bedsocks - apparently the cold thing is common, as are the aches and the sore arm - medication (if tolerated), bottles of water, plain foods you don't need to prepare ... 

A couple of day's roller coaster, compared to being dead from the virus? My hope is the reaction will be milder when I do this again in mid-May. (It was.)

PS: I'm still waiting for Bill Gates to get in touch and I haven't noticed any improvement in my mobile signal, so I think we can discount those. 😁