Hi everyone, hope you are all doing well. Jumping back straight away to the end of the last blog when I was having the issues with what was possibly the heart. There were a few signs that gave me the impression it wasn’t pericarditis as the day went on, such as it eased when I lay down and when I leant forward. I finally discovered where the actual pain was coming from, which turned out to be my back, I think, but it eased and was quite relieved.
Monday came and went and was still having the pains around the diaphragm, no meds seem to be able to ease it, be it paracetamol or morphine, I just need to bear it till it goes away. The only thing I can do that eases it is lying down but then if I do that I’m not using any muscles and will get weaker which I'm not too willing to do as I'm a) weak enough and b) it’s been a struggle to get to where I am.
Tuesday again at the hospital, this week after seeing the doc I was getting the extra infusion, Zometa along with the usual antifungal, AmBisome, which I get each Tuesday. In regards to the BMT everything is going great, the counts have stabilized and the immunosuppressants are being reduced. I’m on my usual 15mg of steroids which I was on long term and on 250mg twice a day of mycophenolate which will be the next thing that will start being reduced. There are also a lot of other drugs that I’m on antibiotics, calcium, magnesium and the newest one B12, I think in the morning there are about 14 tablets to take and slightly less in the evenings.
I had a conversation about cameras and it got me interested in my own ones again, having a look at them as I haven’t used them in a couple of years. At that stage I was starting to sway more to using the mobile and 360 camera rather than the DSLR or mirrorless cameras.
I’m a Canon man mostly because I initially got an EOS M and EF lenses and got a 2nd hand 7D and built up a full range of EF lenses from 8-400mm, I’ve also got a G9X as a point and click camera. Couple years after that I decided rather than using the above that a phone with a good camera would be better for convenience of not having to carry the cameras, lenses and tripod when out walking, and cut out the need to transfer over to the computer, put on a watermark and any editing, reduce the file size, then most of the time on to the phone. The phone can do most of this stuff anyway. Initially I had a P20 Pro and now P40 Pro, actually upgraded to be able to use 5G, both 2nd hand and dirt cheap especially the P40 Pro as people can’t seem to cope without the Play store and I plan to use the P20 Pro as a GPS tracker while walking or on the bike as it’ll save battery on my actual phone if I need to use it.
Most of my pictures are just going onto social media as well where the quality is greatly reduced (~70dpi), there is no need for anything quite as good quality as any of the cameras take and only would be needed in printing which is 300+dpi, I don’t use it too often but I have my own high quality A3 (surprisingly) Canon printer for any prints I need, or more would like. I need to use up the ink in the machine actually, in case it dries out, although I have been meaning to do this for over a year now.
Anyway, as you can tell I'm interested in cameras and pictures. The next day I woke up and my back was agony the same as when I pulled my back out lifting the spare wheel incorrectly into the boot of the car last year. I’ve had it a few times since then, that was when I really weakened it. I can only think that it was lifting the camera equipment that triggered it and during the night muscles tightened up. The one good thing is that the diaphragm pains have settled, or the back pain is so bad that I don’t notice the other pains, that’ll be another pain for a week or so, it’s really just one thing after another.
Friday was hospital day again. I was expecting this to be a nice quick one as it was only to see the doc. Thankfully the doc I was seeing turned up pretty early, about 10, rather than after 11 at the earliest. Counts were all good but the results of the scan last week of the spine weren't back and told him about pulling the muscle also and he had a look and few other checks of it.
Then he said about getting IVIG, it was four weeks since the last one that I got, I hadn't realised it had been that long and I now get that every four weeks. At least this time it would start at the higher rate and not take quite as long but still be a couple of hours for the infusion alone. I wasn't expecting this, I should have been, so it was a bit of a "damn" moment, mostly at myself and also at the thought of sitting there for probably 3 hours with the way my back is.
The back wasn't too bad, the chair I was on was comfortable enough and gave enough support so it was grand. All done and dusted and home, I was quite tired so ended up going to bed fairly early that night.
Sunday had the football which was the thing of note and went to bed shortly after it was over. The next day was lovely, I started to react to something in the house so I went to sit outside and pretty much stayed there until it was too warm and I was too tired and went in to lie down, watch a film and fall asleep.
Back at hospital again and pretty much the same as usual, the doc said to take paracetamol and codeine to help ease the back. I'm normally not one to take pain killers but on doctors orders I will. He also booked me an x-ray just to be on the safe side as the new pains started after the MRI, of which the report is still not back for. I had my AmBisome and then down to get the x-ray, I'd been particularly sore that day and really struggled with much movement and the worst part was I had to take my trousers off and lie down, two of the hardest movements to do at the moment but not as bad as putting on socks.
I got down on the bed ok and got into position, onto my side, then the getting up when it was done... I thought it would be a better idea to ask them for help getting sat up as it can be a real struggle and so they did, rather forcefully and painfully but I was up and able to get off the bed, they brought in my stuff so I didn't have to walk to the dressing room.
All done and home, that's when I found a lump on my chest where one of the nurses helped me up, I was expecting to look in the mirror and see a big purple bruise but thankfully there wasn't, I only noticed it because of a pain that was developing across my chest. This pain gradually increased but the lump decreased. I started taking the pain killers which seemed to help with the back a bit but not the chest.
And on to today, the back doesn't seem to be quite as bad nor the chest despite it being more widespread across the chest, I'm sure all the pain killers are helping with this. I've been sitting out in the sun for the last couple of hours reading and then doing this, starting to get a bit too warm though strangely at half five it feels warmer than it did at 3.
The back has been incredibly frustrating as I'm not able to get out for my walks with it. I really have a longing to get home-home. Things will be much more simple when I get there but I don't see it happening any time soon as I'm so weak, I am improving though... slowly.