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

Tuesday, 11 January 2022

Portsmouth Cathederal

On Sunday, the rain took a short break and we had another reason to go to Portsmouth, so while there, we took a look around the area of the Anglican Cathedral of St Thomas of Canterbury, known simply as Portsmouth Cathedral, where one of my relatives had been christened in 1909. While we were there, we met a couple. The man clearly knew a lot about Portsmouth's history and it's attractions and it was so interesting to listen to what he could tell us. 

Wasn't expecting to be 'escaping' this early in 2022. Oh the excitement! 

Sadly, just standing for that short time has left me with miserable pain in my back and legs, although, it's not as bad as usual from outings and certainly not as bad as it has been over the last few years. However, I can feel the headache and sore throat that are the first signs of post-exertional malaise (PEM) developing today, two days later, so clearly I'm not going to be let off that easily!

Friday, 31 December 2021

2021 a year in review

Hythe on a dull and miserable Christmas Day

The first time I left the house in 2021 was to Escape to Hythe on 25 Apr. A lot of the reason for that was feeling so ill after my first Covid Vaccination in February - from which I have never fully recovered back to my usual baseline. Imagine how bad actual COVID could be! It makes me even more concerned about making sure I don't catch it - vaccinated or not and I have now had both does and booster - and ever more angry at the complete lack of protection being afforded us.

The next time I went anywhere was to Hamble on 30 May and the consequences of that 1¾ hour outing were really too much to make it worthwhile.

We tried to go out on 14 Aug, but I twisted my ankle and had to abort that.

North Devon 2021

We did have a holiday in north Devon in Sep and I really should be grateful for that (and am for the walk along Saunton Sands, although the consequences of that simple thing were a bit much), except the preparations running up to the holiday were fraught with stress and difficulties, the accommodation really wasn't great; food shortages had an impact; there was so much I was unable to do because it was inaccessible due to being so busy; where I could not stand to queue and, to be honest, I came home wanting to cry, feeling like I needed a holiday.

Didn't go out again until 19 Dec to Bournemouth Christmas Tree Wonderland. 'Paid' for that with Post-exertional malaise (PEM), but for once, it was worth it.

And about 10-15 minutes in Hythe on Christmas Day.

Otherwise, this Christmas has been as dull as the weather. There has been far too much making do, although compared to most people we really haven't had many excesses and still the richer food than normal hasn't agreed with either of us.

As for 2022, my expectations are low and I think they need to be to be able to cope, otherwise the disappointments would be devastating. COVID isn't going away any time soon. If we can manage to get away to somewhere where no other human wants to go, but is still nice, that would be a bloody miracle. 

Sunday, 26 December 2021

Christmas 2021

'Upcycled' containers and home made crackers 

Myles trying to open his own pressie

Unwrapping the Class A Catnip

Noah looking dapper in his new bow tie

Christmas 'socks' in Hythe, Hampshire

Guerrilla crocheters have attacked in Hythe!

Christmas Day walk along the shoreline of Southampton Water at Hythe, Hampshire

Monday, 20 December 2021

It's beginning to feel a bit like Christmas

Crowds at the big tree in the Bournemouth Christmas Tree Wonderland

Last year, I'd wanted to at least see some Christmas lights, but it never happened. This year, I wasn't going to put up with being disappointed: I needed to feel some Christmas atmosphere and have some pleasure. So, knowing I'd get one chance, I decided to research the Christmas offerings in the area and decide which one would bring me the most Christmas spirit for the least energy expended. 

The things people with energy limiting conditions have to think of would boggle your mind if it doesn't affect you. Youtube, in this, is a life - or at least energy - saver, even as I watched Christmas lights and markets all over the world. 

Winchester Christmas Market didn't really have the appeal I was looking for and I wasn't convinced of the proximity of lights; Southampton always seems to make the annual Christmas Tat Sheds look like it's full of bored people, just queueing for junk food; I've got to admit that Gunwharf Quays Christmas Village in Portsmouth, which is new this year, would probably have been my first choice, but parking and access is always a problem - train would be perfect, but not during the plague - and thus, Bournemouth Christmas Tree Wonderland came out favourite.

So yesterday, late afternoon, we drove over to Bournemouth. Plus point: we got a disabled parking space very close. Negative: am I imagining COVID, coz it doesn't look like anyone else has even got the memo! OK, a minority of people were wearing masks, even outdoors, but the majority are not and are bunching up with strangers in crowds like it's 2019. We could keep moving and some distance around the Christmas Market area, but when we tried to enter the Lower Gardens, there was quickly a bottleneck of people and I will admit that I turned around and ran out of there, coming this close -><- to having a full-blown panic attack.

However, we regained composure and followed the almost abandoned and empty roads and paths around the side of the gardens and dipped in from side entrances, stopping before getting near the crowds of sheeple crushed into the middle. 

Hence my photos are crap, because they were taken with zoom, on a phone, from a distance, but hey, I got out and saw something other than my one room!

Today, of course, EVERYTHING hurts and I have a sore throat, I'm sneezing and I feel like I'm coming down with flu - typical post-exertional malaise symptoms - as ever, the required "payback" after any outing. I'll be resting until Christmas.

Bournemouth Christmas Tree Wonderland

Monday, 27 September 2021

An excursion to the dining room

Not my cat

It's been two weeks since we got back from holiday and I've been resting ever since. Last week I had a short-sharp-shock course of Aciclovir - to try to bring my super-susceptibility to recurrent cold sores under some control - and on Thursday, a nurse came to the house to give me my flu jab (to which, I've had no reaction, not even a sore arm). As on previous occasions that I've had courses of the antiviral, I began to feel a bit more clear-headed and compos mentis.

Yes, an improvement after antivirals. Probably not psychological then!

On Friday, I'd had a long chat on the phone to BF in Australia, so for someone with myalgic encephalomyelitis, these were a couple of "busy days". Otherwise, I'd mostly laid in bed and done relatively little either mentally or physically. 

So, on Saturday, I was daft enough to think I could "eat out". By "eat out", I don't infer getting all togged up in my finery and hitting a Michelin star eatery, I mean, leaving the bedroom and going downstairs to eat at the dining table with him indoors, having had the quickest and most cursory shower first.

Ate my meal (all freshly cooked, from non-processed ingredients) and a fruit-only desert, when suddenly, with no warning, I began to overheat (I'm WAY beyond menopause, so it's not that) began to feel unwell and to grey out (Pre-syncope). At first I couldn't move, but felt like I was going to faint and fall off my chair. As soon as I could, I slid myself down and laid on the cool floor. When it passed sufficiently, I crawled back upstairs to bed on hands and knees.

It left me exhausted and feeling like I was shaking all over from extreme exertion, but with no external sign of shaking. I had a terrible night, sleeping lightly, waking up constantly from vivid dreams, feeling like my brain was shaking inside my head and with a pain in my stomach that was like it'd been kicked.

It's like my system is so fatigued that it can't manage sitting up and digesting simultaneously, possibly exacerbated because I'd had carbs (potato) at both lunch and dinner. I already suffer lactose intolerance and I'm wondering if this is some sort of increased carbohydrate intolerance. Funnily enough, many years ago I'd adjusted my diet to not have carbs more than once a day. It's not always easy to achieve, but I wonder if it may help to be more strict on that. 

All day Sunday, I had no alternative but to stay in bed and was even unable to sit up. I couldn't increase my angle of recline beyond two pillows, because it would increase the pain in my stomach to feel like I was constantly doing sit-ups and would bring on horrendous feverish headaches with nausea. It's no better today. As "being confined to wheelchair for much of the day" infers an ability to sit up, we have to conclude that I'm worse than 80% on this scale. That now puts me into 90% and severe. It's very frightening, because, after consistent worsening over 48 years, there really is only one place left to go and, with no care and no treatments, only one way to prevent going there: avoid everything.