Hi everyone, hope you are doing well and enjoying the odd day of sunshine and I think there’s been an ease in restrictions the last couple weeks? I’m not sure I’ve no need to pay attention to it as I’ll not be going or doing anything for a while yet.
It’s been a pretty mad and unpleasant few months but everything seems to be starting to make a bit more sense and I'm understanding what is doing what and what's causing this, that and the other. To start off again reiterating the last blog, a couple of months ago I had a graft vs host (GVH) reaction which caused me to be in hospital for a while and had to get a biopsy and scan done to confirm. Due to this being positive they stuck me on a really high dose of steroids. After a while of getting little/no sleep it started to take its effect and needed to be submitted to hospital again and after a good sleep, rest and plenty of fluids I was feeling much better.
After this visit I started to get a fair bit weaker although the steroids were being reduced. They were still having quite an effect on my muscles, wasting them away and having to start to use a walking stick. My cough had returned also. I've had one since the surgery on my chest in Dec 19, but this was incredibly strange and one night I was lying there and just felt as if I was drowning with the amount of fluid that kept building up and returning minutes later after being cleared, it just wasn’t right. At this point I realised it was some sort of reaction I was having.
Over the course of the last 3 weeks or so we've been trying to work out exactly what it is or what’s causing it, hayfever was a thought but after spending a day out in the garden it was ruled out. When I was in bed it was really bad, wearing some clothes, certain locations, possible times of the day, when the washing machine was on. It was hard to piece together but I think we have finally got down to it being a reaction to certain chemicals, more so fragranced and cleaning chemicals. I discovered THIS (TILT) which seems to be incredibly similar to the things I’m reacting to although I seem to react with my lungs filling up with fluid rather than the tiredness etc.
I’ve had to get all new clothes, everything I had has Lenor fabric conditioner through it which I react to and no matter how many times we've washed things I still react to them. Thankfully I only need a few sets of clothes atm as I’m in the house all the time but at least when I get back to my normal weight again I’ll be able to get a new wardrobe then. I’ve had to get new masks too, a couple of which had been covered in a fragrance which I was reacting to so they were passed on to others and I’m allergic to Dettol and cleaning products.
I was at the hospital getting an infusion in a side room one weekend and was grand until they mopped the corridor and I kicked off. This week I noticed that each time the nurses came near me I started coughing a bit more, and for a while after they left and I think I may be reacting to the hand sanitizer they use and in the waiting room I just cough and cough, but as soon as I step into the side room with the doc it all settles. Which in a way was good as the doc got to see exactly what was happening. I will have to start using the industrial mask to test it out and see how well it works cause I can’t think of anything else that could possibly work. Certainly normal masks don’t and don’t have the ability to filter out what I’m reacting to, but the proper mask can be tough to breathe in as it does take more effort and dunno if my lungs are strong enough for that just yet. But I'll need to find a way, there’s no way I can keep coughing and reacting as much as I am.
Still, over the last few weeks I’m still getting weaker and weaker and have progressed on to having to use a walker which has a seat, I can’t walk much of a distance but by far the worst is stairs and steps, I really struggle getting up them. I wouldn’t be able to get up them without pulling myself up using the side rails, even crawling is a struggle. Everything is incredibly heavy, as if there are weights attached to me. The docs have said this is because of the steroids but with the reduction there will be a point where the muscle wastage will stop and I’ll be able to build it back up again.
Pretty much since getting the GVH and the increase in steroids things really went downhill, the reaction to the chemicals certainly didn’t help with things and the pain in my chest and muscles with coughing so much was just the icing on the cake despite all the pain relief. It’s been a very unpleasant few months and a real setback on the recovery.
But
Now the steroids have got to my maintenance level things seem to have shifted, I feel more able, I feel a little sharper. It’s only been a few days but I think I’ve hit the trough and starting to stabilize and hopefully start to pick up a bit and be able to build up a little and those stairs won’t be as daunting.
Also add body sprays to the list of things I react to, although I already expected that and perfumes, another reason why I probably react badly in the waiting room. Well that will do me for now, Euros have started this weekend so I’ll pretty much always have something to watch. Hope you all enjoy the rest of your weekend and the week ahead.