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

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