Thursday 11th June 2025
Times
Hi everyone, it’s been a few months, I’ve not been updating much on the blog itself but I have updated a few books. I guess a lot of nothings have changed over the last four months. One of the first things was getting all my passes for the forests and days out; one for Castlewellan, Delamont, Kilbroney, another for the forests Tollymore, Glenarrif and this year I also went for the National Trust pass for Castle Ward, Mount Stewart, Giant’s Causeway etc.
It has been nice to be able to get to these places again, but very different from the way things used to be. Before it was always running around with lots of walking and taking pictures, which I really enjoyed at the time, it was fun exploring all these places. Now on the other hand it’s very much using the knowledge that I have of the places to go directly to places that are really nice and go there and soak in the surroundings.
In a way it could be seen as a bit of a meditative or spiritual thing although that’s not what it is, I’m just going to nice places to sit and read or look around me, it’s very blissful and when you think of different books, they remind you of the different locations you’ve just sat and read.
The legs have had a big improvement; I am no longer constantly in agony but due to this and being a bit more able other issues that were masked are now popping up. The back and chest are still incredibly sore and really uncomfortable most of the time, it’s hard to find seats that I can fully relax in, but the big thing is the timing of the pain meds, there a nice 2-3 hrs each day when everything is just peachy and then that tips and I’m just really tired.
The ongoing issues with the lungs with the infections over the last couple of years has probably been the main limiting factor. Back and forth with different tests with the lung functions down and the last was testing the diaphragm to see if it was working but they couldn’t find it but because the organs were moving, they assumed it was working ok. Damp days they are a lot more productive which is also quite telling if I do anything, even just walking up the stairs is a lot harder on rainy days than on sunny dry days.
The heart issues are still ongoing but there’s nothing really to be done with that, keep on the meds as the doc was saying that things are good but if I was to come off them the likelihood of flare ups is pretty much guaranteed.
It is hard to focus though, even writing to here, I’ve been distracted a few times and gone off to do other things and lose my train of thought coming back and just stopping to think, of nothing specific, just that the mind wanders.
A lot of work has been done in the house; all repainted, a nice shelving and cabinet and designed the way I like it and outside also where I spend a decent amount of time. Some good raised bedding for veg and other plants and the bin planter where the recycling bins are in with the planter above it; people seem to like that, even though it’s not perfectly made it’s more than adequate for the job. Have a corner still to get sorted in the front but need to move a load of stones and fill with soil which, so far, I could not be bothered doing, but soon.
Have a few other things I’m waiting on finalising people to come and do, shutters, attic, windows. Will hopefully hear today or tomorrow about them and then have them all done by the end of the month, but let’s see.
Three months ago I said to the docs at hospital about reducing the steroids or at least trying to, I was floating the idea out there and the next month I was with the main doc who firstly was talking about spreading out the appointments, so rather than every four weeks, seeing them every 6 months, which is pretty incredible. For nearly 30 years I’ve been going every week or two and only the last couple of years has it been spread out to four weeks, so going to six months is quite daunting.
The good thing about it is I’m actually still up every four weeks for treatment so if there are any issues I can highlight them and see a doctor. It just makes sense as when I go in to see the doc it’s very much just going over everything that had occurred rather than what is occurring.
The other thing was about reducing tablets, I know I’ll not get off them but I would like to get to as low a dose as I can, but 10mg is a dose that is ‘safe’ anything lower than that issues always seem to crop up. The doctor is aware that I am very much the one person who knows how I feel and what is working for me and so has left it completely in my control to try and reduce them, sensibly and so the next day I did…
Pretty much straight away I noticed a difference, it so incredible how one mg of something can change so much. The lungs were a lot more productive, hay fever seemed to come back a little and even a little bit of eczema as well. After a couple of days my sleep really changed, I was tired but just not able to sleep, only getting a few hours here and there. During the day trying anything I was drained and everything was such a chore and impossible to do, arms feeling heavy and being even more drowsy than normal.
I went along with all this; I was expecting it so I wasn’t overly bothered and hoped it would gradually settle, which some of it did after a short while.
My main concern was the heart issues and despite a little bit in the mornings before taking the tablets I was happy enough, and now just over the last week (week six) it has got worse. Monday I was barely able to sleep and gave up at about 3am and got up the heart was really uncomfortable and even after taking my tablets later in the morning when it would normally settle, it didn’t and so for the full day, I had what I imagine angina feels like, tight chest and discomfort around heart and just very laboured.
This continued the full day and into the next. I took Tuesday’s tablets waited a couple of hours and it didn’t settle and so I made the decision to take an extra 1mg and it settled. And so change of tactic, over the weekend I’m going to change to taking five mg in the morning and five in the evening, get used to that and then reduce the evening by one mg. This is in the hope that the mornings will not be as bad.
It's the hope…
It hasn’t killed me yet though.
Anyway, so much more despite everything not being perfect and issues, things are so much better than they were even a year ago, an incredible transformation in so many aspects of life which I’m incredibly grateful for. With the increase in the tablets again I am feeling a lot more enthusiastic about doing things and so today I may go out for a while despite the threat of downpours and enjoy a bit of outsideness and maybe the cinema later.
Until the next one at some stage!