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

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.

Sunday, 12 September 2021

Coming to the end of a holiday with ME

Combe Martin : Combe Martin Beach
cc-by-sa/2.0 - © Lewis Clarke -

So our week was coming to an end as Friday was our last full day. The weather that day was horrible, hence I didn't get my own photo and am borrowing this one, but we did walk onto Combe Martin beach. For all of about 30 seconds. We'd really run out of places to go as it's a bit difficult when a) you're trying not to go indoors because of covid and b) trying not to be outdoors because of the rain. 

Whilst I can still remember childhood holidays where I know we visited places, but I never actually saw them, due to being stuck inside the car, with it's steamed up windows, eating our sandwiches, I had no wish to reexperience it.

For lunch, we were luckily able to dodge the showers and sit outside the Tides In and Out Café, in Borough Road, Combe Martin. We'd been there before. May I heartily recommend their fish finger butty: fish fingers - about half a dozen good quality ones - in a big soft bap with salad and tartare sauce. Proper treat. 

We weren't so lucky at dinner time. Remember, I mentioned that our holiday grocery order had Brexit shortages? So, we'd run out of meals. There was the usual problem that nowhere, that looked any good, ever had space; I didn't feel safe to sit inside and the weather wasn't going to let me sit outside. And after the not so great experience with the fish and chips, I didn't want to risk a dodgy takeout, so we went to Tesco and settled on a pseudo-Chinese meal-in-a-box. I didn't check the ingredients, but had survived similar. Now that I have checked them, I can't see anything listed that instantly alerts me to any potential intolerance, but once again, my system was having none of it. My gut immediately bloated, I felt sick and the pain in my stomach hit about a 9 on the Mankoski Pain Scale.

We came home on Saturday, via Tiverton, where we made a short visit to a friend (and sat outside) - this was the first time I'd socialised at all since March 2020 - and I'm pretty sure I did an Oscar-worthy performance of being relatively well.

We also stopped off for lunch at Elsie May's - which we chose, purely because of the outside seating and proximity to parking and were very impressed by their service, friendliness and food. Completely exceeded every expectation.

But a week in Devon and not once did we have a Devon cream tea. We had a takeaway scone, jam and cream in Minehead - which, of course, is in Somerset, where I can put the jam first and not risk extradition - but we had a hankering for a proper afternoon tea on tall cake stand, with sandwiches, scones, cakes, tea ... Everywhere with outside seating and looked any good was always full. 

We'd planned to stop off at the family graveyard on the way home, but new building and road closures meant it couldn't be accessed without going a long way out of our way. By that time I was too fatigued to deal with another delay or extension to the journey, so we gave it a miss, but this meant yet another disappointment in a long line of disappointments. There's a f*cking limit.

To be honest though, I just want to cry. It doesn't feel like I've had a holiday, because I wasn't able to enjoy much of it, firstly because of the stress leading up to it and not being able to rest (not helped that I've never got back to my baseline since getting the first covid vaccine in February); I could only manage to be out for a couple of hours or so a day - I didn't feel well at all with daily headaches, sore throat, Post-exertional malaise (PEM), then I had back / neck / shoulder / hip pain on top (and my ankle still hurts), and had I been at home, I would definitely have stayed in bed, but a) the concentration camp wasn't pleasant enough to want to spend all day in, b) the bed wasn't comfortable enough (nor was the sofa) and c) I really had to 'show willing' so him indoors had some break or at least change of scenery. The result is that I spent most of the time in those odd hours basically in a fog or trance, wanting it over, not really 'being present' (I can barely remember half of it and none of conversations), only just about holding it together. 

The fact that I was 'below par' (even below my usual baseline) made everything so much more difficult, like being more susceptible to recurrent cold sores; faster and more violent reactions to food intolerances; I cannot stand for more than seconds at any time, but the fact that 'Devon was full', so there was a severe lack of space in restaurants, on park benches, etc., didn't make that any easier to cope with. (We've tried time and time again with wheelchairs, but I can't tolerate them outdoors with all the pain-inducing agitation of uneven surfaces.) It's another layer of difficulty having to try to avoid covid (especially when nobody else is) and once the weather changed, that became even harder still. In the end, I gave up.

We picked the cats up from the cattery on Sunday morning. This time, I remembered to take puppy training pads. One of the cats pooped again, almost the moment the car started, entirely missing the puppy pad, of course. One of them managed to projectile vomit, which was strained out through the mesh 'window' of their crate. When we got them home, the marmalade one was wet and covered in puke, so I washed him down in the shower. He jumped out of the bath, dived into the sh*tty litter tray and emerged covered in stuck-on litter up to his armpits. Back in the shower. Catch cat. Towel dry. Push him out the bathroom door so he couldn't get to the litter again, at which point the other furry idiot with sh*t on his paws also escaped before I could clean him, because by that point and after cleaning up the crate and all the puke in the bath, I was so fatigued I was gripped in pain to my core and collapsed on the floor, unable to move. 

F*ck, I NEED a holiday, but I don't think I could survive another one!

Friday, 10 September 2021

Lynton & Barnstaple Railway

Train on the Lynton & Barnstaple Railway at Woody Bay railway station.

On Thursday, on the way back from Lynmouth, we'd called in to Woody Bay railway station on the promise of a cream tea, but it began to p*ss down and was rather busy and peoply, so we only stayed long enough to see the train pull in.