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

Friday, 3 September 2021

Going on Holiday with ME

The park I nearly saw on our last aborted outing.

Now, I'm trying very hard not to be one of those first world people who feels "entitled" to a holiday, but, by god, we NEED the respite and a change of scenery. For the last 18 months, except for the one week we "escaped" to Lincolnshire last year, I've only left home for an hour or so on four occasions and even those times have come with consequences. Even leaving the bedroom and going downstairs now leaves me with chest pain and exhaustion, so I rarely do that either.

This is no life, but preparing to go somewhere for a week has been fraught with enough difficulties that threaten to outweigh any potential benefits. 

We - well, by we, I mean I - do not feel that it is yet safe enough, certainly not with my laundry list of chronic illnesses, despite being double-vaxxed, to travel by any shared form of transport like train, or plane (and I don't have the energy to deal with all the bureaucracy of forms, tests, etc.), so a holiday in the UK, by car, to a self-contained accommodation (like we did last year) it shall be.

Even pre-COVID, every time I went to a public place like a hospital, an airport or on a plane, once just to a local shop where someone sneezed, I would catch a cold or flu and it would then hit me severely. (Once managed to acquire Norovirus just from a quick visit to a hospital for pre-op screening - needless to say, I didn't go back for the op!) Most times I would be so ill that I'd have to remain flat, in bed, for anything from 4 to 6 months to recover. And if that's just from a cold or flu, WTF is COVID likely to be like for me? So I refuse to risk finding out. 

We just don't know what causes ME, but there is convincing evidence that in at least a subset of patients ME/CFS has an autoimmune etiology. In my case, I would describe my immune system as 'disrupted'. It seems like it doesn't want to work at the gate, letting me catch anything that's going, easily, then works all too well (overreacts), causing severe and longer lasting symptoms. By the same token, we have no idea if this same anomaly will disrupt the effectiveness of the vaccines. Will I have antibodies, or too many that cause a storm? In the UK antibody tests are only available to NHS workers. My GP advised against a commercial one.

So, with no effective COVID protections in place now and mutations running riot, I have no intention of taking any risk whatsoever. I will be wearing a mask often and I won't be remaining inside anywhere at all where there are other humans. Some will say I'm being "anxious", but based on past experience and the way my body works, I feel this is justified. It's my life and nobody else will protect it. 

Not knowing which way the wind would blow, we left it as late as we dared to book holiday accommodation. By then it was Hobson's Choice, in Ilfracombe

Seriously, I specified the whole of England at Booking.com then whittled it down, eliminating any that didn't fit the rest of our criteria and ended up with just one available option. At least I haven't been to Ilfracombe before and there are places nearby that I have been to and am more than happy to visit again.

We did, however, decide well in advance on the dates, so we could get everything else organised. So way back in June, we booked the cattery for the cats' 'glamping holiday' while we would be away. The cattery, rightly (their licence depends on it) insist that the cats are vaccinated, so, at the same time, I also booked the cats vaccinations - which are due in Aug anyway - for the exactly right date. 

Then, just days before our appointment, our vet announced that they had people off with COVID and were cancelling non-urgent and regular appointments. At the same time, they posted that even the local emergency vet service had no capacity left as they also had people off with COVID. So there was no realistic expectation that an alternative vet would be able to do the vaccinations either. 

We then had five very anxious days, wondering, not knowing if ours would be among those cancelled - because no cat vaccines, no cattery: no cattery, no holiday - trying to not sound "entitled", but at the same time, trying to impress upon the vet how important this is for us and that our holiday depended on it. 

Among the list of things that travel insurance would likely cover, I don't suppose for one moment that "can't go because the cats didn't get vaccinations and the cattery (rightly) won't risk their licence without them", is on there.

Over those days I was frantically emailing backwards and forwards with every cat sitter I could find in the city - all of whom said either they don't cover our area, were fully booked because of the short notice, or didn't respond at all - to see if there would be an alternative for the cats that made the vaccines less vital.

The vaccinations were done in the end, but it was five days of mentally exhausting anxiety I didn't need. And they were only done the day before we had to either pay the final balance or cancel the holiday. That timetable was way too stressful. 

That timetable, leading up to a holiday for someone with ME ... we'll it's threatening it nearly as much as the vaccinations themselves were.

Stress is exhausting. Stress for someone with myalgic encephalomyelitis is liable to cause a 'crash' or relapse, worsening of symptoms and post-exertional malaise (PEM). Just what I CAN'T risk happening just before a holiday and a car journey for which I need to rest in advance to be able to cope.

We've booked self-contained accommodation with kitchen facilities so we don't need to go too near humans for anything. As last year, I ordered groceries for the week. Last year I was able to have them delivered direct to where we were staying, but this year we'll have to take them with us and we can't easily transport all the fresh ingredients we would normally eat and, my husband could do with a break from cooking anyway. Last year, I spent days and days reading every last ingredient in every ready-prepared meal and came up with a list of items that I could risk, that I felt I could tolerate as a temporary measure. It wasn't a long list. This year, of course, loads of those items weren't available and the delivery has arrived with items short, so we'll have to risk going into somewhere locally, and risk another lot of ingredients that my system may not tolerate.

We had tried to go out to an open air event in a local park in mid-August. We got there. We parked. I was walking across the grass on the way there and turned my ankle badly when I found a hidden rut in the grass (probably old pitch marking). So, with a holiday ahead, even though it was then still three weeks away, I didn't dare exacerbate it by walking any further or spending any more time out. So we gave up on that outing, came home, immediately applied cold compress. 

Day before the holiday and it still hurts like F*CK. I just don't heal.

We're not there yet. I NEED this holiday, but I'm also scared stiff. 

Most of these problems were avoidable: COVID difficulties would be a lot less if we didn't have idiots in charge and sheep following them and some proper protections in place instead. Brexit-induced food shortages ditto really. The point is, these additional difficulties are bad enough for healthy people, but are amplified exponentially for those of us who are chronically ill and vulnerable and means it is going to be a very long time yet before we can do anything 'normal'. /Rant

Monday, 31 May 2021

Hamble

Southampton Water from Hamble Common Beach

The gravel and mud beach at Hamble Common

And just in case of attack, an anti-aircraft gun.

Left the house yesterday for only the 2nd time this year, going to the beach at Hamble, because I'd never been to the east side of Southampton Water. Take my advice: stay on the west, unless all you want is a view of Fawley Refinery

The view from Hythe is much nicer. Well, from anywhere is nicer!

Double-checked my Google Timeline today and we'd travelled no more than 9 miles from home and were out for a total of 1¾ hours, four minutes of which were stopped at the car park. Therefore, I cannot have walked far in that time. 

Today, I am in so much pain, most of the day I've been unable to function in any meaningful way. I didn't sleep well (partly because of next door's cat serenading for hours), but mostly because it was impossible to get to sleep while lying on either side because of the extreme pain, but I can't easily fall asleep on my back either. My neck and back are utterly screaming with pain, mostly from the jolting from the poor condition of the road surfaces - over just that short journey. 

My hips and knees are beyond painful from 'walking'. I doubt it was even 50 yards. 

Every muscle and joint hurts and I feel like I've been hit by a truck. I took Diclofenac earlier - which I only do in emergencies - and it merely dulled the pain slightly for about an hour, if that gives you an idea of the level of it.

This afternoon, I'm starting to get the sore throat and feverish headache that are the classic signs of the onset of Post-exertional malaise. Chances of being even at my usual baseline - no more than reclining in bed with visits to the loo being my only activity: I don't even go downstairs - for the next few days is doubtful.  

It's laughable really: If going 9 miles, being out for 1¾ hours and walking a few steps does this, what chance, other than becoming a vegetable (and I'm almost there already) do I ever have of staying within my “energy envelope”?

As I say, this is only the second time I've left the house this year. I can bear this level of lockdown - mine started way back in 1995 - better than most people seem able to do, but it is not good for the mental health to be stuck in one place all the time, however, it's also really not easy to see the benefits of going out anywhere either if these are the consequences. I often hesitate to write about this, because I know it can sound like I'm just whining, but I'm starting to realise that I need to do so, because I need people to understand my reality and the reality of so many other isolated and neglected people with Myalgic encephalomyelitis (ME).

Monday, 3 May 2021

World's Smallest Kitten

The very spot where we found the three tiny kittens 20 years ago

On May 3, 2001, at 7 p.m., the dog and I were walking up the road, no more than 50 yards from the house, when we both heard a faint little squeak. Often lizards make this sound, so we didn't think too much of it at first and carried on walking. But on hearing the second squeak, Holly dog cocked her head and we must have both thought the same thing at the same time, "That ain't no lizard!

We turned to see what we thought was the World's Smallest Kitten crawl out from the undergrowth to the side of a clump of canes, close to the water trough and onto the side of the road. It was the ball of fluff, later named Balu because at that time he was just a light brown with no black markings or stripes, resembling a little teddy bear. He quickly dashed back up into the undergrowth, where he huddled with two better qualified entrants for the smallest kitten record. 

Holly was down the ditch and up the bank in a shot to "rescue" them, unprompted. Needing three more cats like I needed a hole in the head, but being unable to leave them there alone to get eaten by wild dogs or squished by passing cars, I went home and got a box then rounded them up with very little resistance. All three of them fitted in a shoe box with two-thirds of the space spare.

Noting the difference in size between these kittens - Balu was the largest and measured 4½ inches from nose to bum (he fitted in the palm of my hand) and my vet estimated them to be between two and three weeks old - and the 50 lb. mutt, I first put the box on the table, out of her reach. That was not the right answer, because she paced and howled and yowled and cried. So I put the box on the floor and supervised closely as Holly stuck her snout into this clawing mass, fished out little Balu, laid him on the floor and began to wash his underparts. 

For the next three nights and days, the dog never left the side of the box and continued watching her new "adopted children". 

Three kittens in a basket and this was when they were already half grown!

While I fed baby milk in one end every couple of hours for the next few weeks, Holly took charge of cleaning the other ends, in a production line system. 

Balu was "the baby who would not be put down" and screamed his little head off if I tried to do so, so mostly I didn't. Thus, he spent most of his first few weeks sleeping in a makeshift hammock inside my t-shirt as I worked, took the dog for walks, etc. And, as soon as he was big enough to crawl up, he would crawl up the front of me, plonk a paw either side of my neck and reach up to "kiss" me on the lips. And he still did this almost every day of the 15 years of his life. 

As the kittens began to grow up, I could open the front door, in full knowledge that this big dog would carefully pick up stragglers and carry them back indoors again. Six years later and both Balu and his sister, Kitty (sadly, we lost the other brother, Khan, in November 2006), still came in to hide whenever "mummy" barked. And as soon as they were old enough, they would come for walks with the dog and I, like a line of little ducklings and it was so funny, when they started trying to bury "mummy's" poo pile that was almost as big as themselves! 

The day after we found the kittens, I learned that my friend Natalia (whose cats may have been their ancestors), had died at precisely 7 p.m. on May 3rd, 2001.

Nothing to see here, just a dog and her "adopted offspring" out on a walk.

Sunday, 25 April 2021

Escape to Hythe

Hythe Pier and Southampton Water from Prospect Place Park

High Street, Hythe and they put the bunting out for us. (OK, the bunting is always there.)

First time leaving the house (not counting once to the post box on the corner) since Christmas Day. Hard to believe this is Britain with blue skies like these, it was less peoply than I expected and even sunny enough for an ice cream.

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 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. 😁 

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

Wednesday, 9 September 2020

River Nene

Sir Peter Scott Lighthouse

Looking across the River Nene to the West Lighthouse

Looking out towards The Wash

Looking inland along the River Nene

Sir Peter Scott East Lighthouse
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