Hi everyone, hope you’re all still doing well, the last week has been quite nice for me despite not really doing too much. With the nicer weather I’ve been able to sit out in the garden and get some fresh air, covered in sunscreen, long sleeves and sitting in the shade but fresh air! I got into a nice routine of going out first thing, about 8 or 9 and having breakfast, at about 12 I needed to get the parasol out as the sun would be high enough to start getting me over the house. I’d then have lunch, by about 2 I start to get really tired and need a sleep, so I either struggle on for a couple of hours with the head drooping or go inside to lie down. The latest I would stay out would be 4 at that stage the sun has moved round enough to get me past the parasol and it also just gets that bit too warm.
Now the sun is away again and there is the potential of rain, it isn’t as pleasing as before, sitting in the rain and it being a bit cooler doesn’t quite have the same appeal. While outside I would pretty much do the same as what I would normally do. The WiFi doesn’t reach out there well so I just use my phone to tether, which is great on 4G but I have 5G in the garden so very few to no issues.
The mornings I would focus on catch up TV, after lunch would be streaming tv shows and the evenings would be films, not always like that but pretty much something similar. I’d also do some reading and playing on the Switch and done a bit of work on one of my websites, Insyplex although I think I mentioned it before that no one goes on to it and it’s mostly for my own reference anyway and even I barely go onto it except to check I haven’t broke it.
A couple of things that have changed this week is the start of The Hundred, it’s pretty much T20 cricket but with a bowl less each over so it’s a bit faster and generally more likely to be closer scores towards the end making it a bit more exciting. It’s very much aimed towards people who don’t know much about cricket and makes things a little easier to understand.
BBC were doing tutorials during it which explained different things that were happening and why. Although I prefer the Sky commentary, Kevin Pietersen is very knowledgeable about the sport and is incredibly enthusiastic which certainly adds to the enjoyment of it and you always get a good laugh.
The other thing is the Olympics, to be honest I thought I would have been watching this more but I’ve only been scrolling the highlights in the mornings and watching the odd thing. So far I’ve been watching Street Skating, Archery and Cross Country Cycling.
In regards to the aches and pains they have been gradually improving as the week has gone on, I’m not taking as many pain killers but it certainly helps when I do take them and makes movements so much easier and helps to loosen up. I’m starting to find it much easier to get up the stairs than what it was like and getting better techniques for getting up out of seats and from lying down. With using the muscles a bit more they have got sore but certainly not as bad as what the back was like. I still get sore when leaning certain ways, there are a couple of spots on my back where the bone sticks out and they are quite sensitive and when sitting or lying down the pressure on those spots builds up and it gets quite sore.
I’d also absolutely love a back rub, any time I’m getting changed taking off my shirt just does enough of a scratch on different spots and I start to reach round and scratch and that’s me standing there for 10 mins scratching my own back. I have the numb patch right around the bottom of my ribs and I think, and hope that it's maybe the feeling coming back and getting tingly.
I am still getting a lot of fluid retention so have been taking diuretics to try and release some of that, the amount that gathers around my ankles has decreased and rather than being about 6 inches up my leg it's maybe only 3 inches, it’s really strange that you can actually move it around and push it up your leg. I’m really not sure how that works, it's almost as if the fluid is in between things like the skin and… whatever is below the skin.
Last Tuesday at the hospital the mycophenolate was reduced from 250mg twice a day to 250mg just in the morning. I feel this has made a big difference, I generally just feel much better and muscles seem to be building up again. I feel it’s almost the start of things finally coming together. I’ll be on this dosage for at least a month and all going well off it at which point I hope I’ll notice more improvements.
It was mentioned a few weeks ago about not having to come up on a Friday as at the moment it’s just more for reassurance more than anything now as the counts are mostly stable and so now I no longer have to go to hospital then, still up on the Tuesdays though to get the anti-fungal and next week will be extra long getting the IVIG too, apparently its some newer one and takes longer than the normal one that people get. They also changed one of my drugs again from the co-trimoxazole to the yellow-paint-stripper-expensive-fluid thing. I looked up the cost of it and it's roughly £350 a bottle, that’s £7 a spoonful!!
Over the next few weeks I plan to get out walking a bit more again and build up the energy levels. I'll start to get back on the treadmill and spend some time on that, obviously not overdoing it and pushing things back. It will be nice to get to the point where I can manage by myself again, which I don’t think I’m too far off, the pain levels are just a bit too much at the moment but I’m needing less and less assistance each day and mentally I could do with being in my own place again. Soon enough...
Positive steps this week anyway despite nothing much being done, it’s certainly going the right way. Hope you all have a nice week and speak to you later.