Hi everyone I know I haven’t shared anything since August but I have still been writing and posting stuff. The reason I hadn’t shared it was because it wasn’t very “fun” and quite repetitive as I’ve not really been able to do anything too exciting since October. But then again it has been in dramatic few months.
One of my previous posts a summary I was going to share but the server was down at the time and wasn’t able to upload it. And so I’ll do a quick synopsis of the last few months up to the previous posts and then on from there.
At the end of October I started on new tablets which reduced my blood pressure and was getting light headed and dizzy, I also feel there is a connection with them and my leg getting more painful. Due to all this I had to take it easy and not push myself or really do anything. I lost quite a bit of confidence going outside and only went out when I had to with a lot of persuasion.
Gradually I built up a bit of confidence, or more, I didn’t want to let people down and be a complete recluse but I felt quite vulnerable, from the risks of being dizzy and sore, there was also the increased risk of catching infections this time of year.
Which in the end was a massive downfall, after Christmas I came down with a really bad cough and some ferocious fevers and a few hours after midnight on New Year’s had one of the worst I remember and going into a coughing fit. I waited a couple of days before phoning the hospital and they brought me in. I ended up staying there for over two weeks and you can read about it Here and Here. It was an experience and a lot worse than I care to admit. Anyway, I pulled through it and got to a level where the doctors and me were happy that I could go to my parents for a while before heading home home.
It was nice being at my parents but it just wasn’t home, I’m too used to being on my own and I wasn’t doing much to increase my abilities, apart from using the stairs to go up to the loo or to bed I didn’t really improve. The day after getting out I did have to go home though to get a few things and with the limited amount that I did do I had noticed that I was still very weak and not able to keep my breath. I was able to manage though so long as I took my time and took plenty of breaks. When I do anything it’s like I hold my breath and there only so long I can do that before I need to stop to get the saturation levels back to normal again.
After a few days back with my parents I decided that I would be better going home, I would be doing a bit more around the house and hopefully improving on the breathing and fitness. This started off ok, I would get out of breath very easily and have to stop and get my breath back. When I do anything my saturation levels were dropping to about 80-82% but after a couple of minutes the levels would return to about 94% (my normal) and then I could go again.
It was knowing your limits and knowing when to stop and recover, I didn’t notice much of an improvement the first couple of weeks but I didn’t mind that with something the doctors had said when I was up at hospital after getting out.
I was initially a bit disappointed that I hadn’t improved much if at all, but I knew I was really bad in hospital and I’m a little older each time so I was putting it down to the combination and I would soon turn a corner and be up and about again. The doctors though told me that they had only ever seen one other patient with this infection and they also had a transplant but their lungs were in much better condition that mine, not having had any surgery or lymphoma and it took them a long time to recover and get back to any normality.
This made me feel better that I hadn’t improved more and that it will be a slow journey back, although I doubt that I’ll ever be back to even what I was before in September never mind four years ago. At least I’m being fed the reality of things rather than a fairy tale and false hope, and I can properly adapt to how things will be.
While I was in hospital with not doing much moving around my leg got a lot better and wasn’t as sore, then I started getting up walking and it was starting to play up again and the more I moved the worse it got and now it’s VERY bad, worse than it has been. I had a bone density scan in December and the Osteoporosis doc told me the spine is marginally stronger, which is good, less likely for more fractures in that, but the hip is worse which is where the pain seems to be originating, and the knee. He also told me about a possibility of a atypical femoral fracture which can be caused by one of the drugs I’m on and is getting the Radiographer to take a closer look at an MRI I got done to see if there are any signs of that.
The MRI just happened to be the Tuesday after I got out of hospital and showed that there was Avascular Necrosis in my knees and hip and I am getting referred to more doctors in Orthopaedics about that. I’m not sure what they can do that the Osteoporosis docs haven’t already done, may as well go and find out.
I’ve also been getting a lot of help, an occupational therapist came out to the house to assess things to see if there was anything I could do with to help me around the house and advised to get a few things and with living close to the depot they arrived in a couple of days, still some stuff to arrive but that’s not from the centre and need things signed off.
And they have helped loads so far already, I am very pleased with them. Also started back on the counselling which has been nice, it’s just mostly been a chat about things, despite everything that has gone on, I’m not overly bothered by it and also starting to see a physio which will be sore but hopefully will help give me a bit of strength in my leg so I can do a step with each leg rather than using the one on each step.
I did order a couple of nice walking sticks though rather than the hospital ones, obviously the hospital ones are much sturdier but the others look and feel nicer so I’ll keep one in the car to use out and about. A few days ago I started getting a dodgy tummy and having to run to the toilet, not being sick, but it has been incredibly irritating and don’t know what has triggered it as I’ve not been anywhere for a week nor ate anything different than I would normally and everything well within date.
Yesterday though I was scratching my back as it was a bit itchy, nothing unusual but it was really nice and later I started scratching my chest which is unusual and I took a look and had broke out in a rash all over my chest and back which is very unusual. Initially thought it was just a reaction to something but didn’t look like any of the rashes from that.
I am prone to getting shingles so I thought with having the dodgy tummy I was just run down and gave the shingles the opportunity to take hold again but normally it’s on my head and blistery. I thought I would be best getting a bit of advice and went to the chemist who said it looked like a viral infection, so it could be shingles, but probably another one. And that brings me up to now again, I have to try and get through to the GP in the morning to try and get an appointment made with them and hopefully be put on something that will help ease it and the tummy too. I just hope I get through and don’t have to phone hospital as I really don’t want to end up in there again.