Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Monday, 1 March 2021

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. 

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 genuinely 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 a tad 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 pretty 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 ... 

And what's 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 around mid-May, but I'm reading that the side effects of the second one may be worse. Still has to be done.

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. 😁 

Thursday, 31 December 2020

2020 a year in review

The Historic Teignmouth to Shaldon Ferry

On Saturday 4 January we went to Teignmouth and walked around the village and green at Shaldon, surrounded by some of the most charming Georgian houses. Wouldn't want to live there as it must seem choked by tourists in summer. It wasn't easy to park, even in the depths of winter, although the streets were fairly quiet, except the man going round collecting used real Christmas trees to recycle. 

Baklawa Selection at Comptoir Libanais (Exeter)

Saturday 18 JanuaryExeter: Went to Guildhall Shopping Centre for lunch at Comptoir Libanais before going to IKEA Exeter and Currys PC World. This will be because my laptop battery had stopped taking charge and I had to buy a new one. Laptop, not battery, as the laptop was one that you can’t take out and change battery. So is the new one. Now I understand the right to repair movement

Salisbury Cathedral

Saturday 22 AugustTook a walk around Salisbury, carefully avoiding people, not touching anything, not going inside any shops, not even joining any outdoor queues for ice cream and even waiting until I got home to use the loo.

Cromer beach where even the seagulls are social distancing

From 5-12 September we went to Lincolnshire, Norfolk and Essex. Staying in Long Sutton, we visited places in and around Sutton Bridge, NorwichDerehamCromer and Great Dunmow. We'd chosen to stay in an out-of-the-way converted barn, which meant we didn't come into contact with any humans. Had the groceries delivered and ate at home as much as possible and mostly outside when we couldn't. On the handful of occasions I had to go inside anywhere, I wore a mask, avoided touching anything and kept my distance from humans entirely. 

A beach in Keyhaven looking across to Hurst Castle and the Isle of Wight

Friday 25 December – A walk on the beach. Was meant to be Benalmádena, which we'd booked for Christmas, but had to cancel. So, instead it was Keyhaven. Walked about 50 yards and that was enough. Spoke to a dog out on its walk.

The extent of my travels in 2020

Google Timeline confirmed that these are my only five outings this year, not counting moving house (didn't get out of the car, except at each end); two other times, one in May and one in October, again, when I didn't even get out of the car. Oh how things have changed since then. Still better than being dead. Just.

Friday, 25 December 2020

Christmas 2020

Of course Noah knew which parcel was his and his brother's!

Spent Christmas morning watching Garfield.

Fa la la la llama tree

Christmas Day walk on a beach at Keyhaven

Monday, 7 September 2020

Sutton Bridge

Lime Street, Sutton Bridge, Lincolnshire

Lime Street, Sutton Bridge, Lincolnshire

Lime Street, Sutton Bridge, Lincolnshire

Old Custom House on West Bank, Sutton Bridge

Custom House Street, Sutton Bridge

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