Hi everyone, It’s been a month longer than I thought it was since the last time I posted. It’s been a pretty rocky couple of months and just one thing after another, I thought I was making good progress and probably was, but after the graft vs host reaction I was put on a high dose of steroids to help prevent it which worked. Since then though things have gone down hill and down hill pretty badly at times.
The first thing was with the high dose of steroids I wasn’t getting any sleep and any sleep I was getting wasn’t sleep, this seemed to build up and I lost all sense, I couldn’t think. I remember “waking up” and all I could think about was the sock that was hanging up, nothing else in the world mattered. Just that sock. I ended up in hospital a few days to get that tested to make sure it wasn’t anything too serious or permanent, thankfully the MRI came back clear and pretty much getting some sleep was “all” that was needed.
Got out and seemed to be doing ok for a while or at least thought I was, but the steroids have been gradually wearing me down and I’ve been gradually wasting away and losing muscle, I am quite literally just skin and bone, but a chubby face. I’ve gone from being able to walk around ok to having to use a crutch to now having to use a walker. I’m hoping I’ve got to a point where the steroids have been reduced enough and I’m doing enough to prevent it from getting any worse. I can just make it up the stairs but it is a major struggle and I try to prevent myself from having to do it too often.
A couple of weeks ago, when I was sleeping I just coughed all night. It was unnatural, just a cycle of me coughing, bringing up stuff, getting rid of it, coughing, bringing up stuff, getting rid of it…. Constantly all night. I was up at the hospital the next day and they put me on some general antibiotics and got a sample to be tested. I was also put on an antifungal infusion on a Tuesday to help prevent things.
The Friday I was up again at hospital, they had discovered in the sample I gave there was an infection, streptococcus pneumoniae. They had warned me about this that there was a chance that there are bugs inside you that you’ve had your whole life but your immune system is able to just leave them be but with the suppressed immune system they may start to play up. Thankfully we got it sharp and were able to treat it straight away with the specific antibiotic rather than the general one.
But that was only the start of things after a while, it was more than just the infection, long story short, we discovered I was allergic to the fabric conditioner then all fabric conditioners, all except Ecover pretty much. But this would explain how I got the infection, the pneumococcus must have been in my nose/sinuses and with reacting to the fabric conditioner it got into my lungs. Pretty much anything that had ever been washed or touched fresh air I seemed to react to, it’s all a bit of a nightmare and I keep discovering more things each week.
It got so bad a few times that my diaphragm completely seized up and was given pain killers to try and reduce the pain and relax to try and ease it. Thankfully I have a Dyson fan with a Hepa filter so I have a “safe space” to go to. I got some new face masks with proper filters for allergies and pollution so hopefully they will help me be able to breath when out and about on days when the pollen count or whatever it is I’m reacting to, they seem to work well so far but haven’t had a proper test yet. I also got a particle monitor which tells me the PM2.5 and PM10 counts. Pretty much anything over 2 and I'm reacting, which is realllllly low and in the normal “good”.
I had pretty much been able to come off the painkillers, that is until Monday when there was the high pollen count and I spent the day coughing. The following morning yesterday I woke up with my diaphragm completely seized up, it felt like a belt across my waist and the pain was horrendous, it’s all currently an ongoing battle and a complete nightmare.
Thankfully the steroids are being reduced and getting to a point that things will hopefully start to turn, the muscle wastage has been horrific, I can barely get up the stairs after making good progress before and able to get out to start walking. Hopefully over the next couple of weeks that will change and I’ll be able to start to get out again but as of now I’m just doing some simple exercises in the house.
It’s not been an easy couple of months and a real struggle but getting there, slowly but surely.
I’ve not been bothering with social media or any form of contact really but I hope you are all doing well.