Monday 29th August 2022
Resurgence
Hi everyone, hope you are all doing well. Things have shifted for me over the past four weeks, some good some bad. With the way things had been for the last time it had been a real low for a while but despite all the aches, pains and other issues, I thought “pfft it’s not gonna get much better” and decided rather than waiting for things to improve to just do and be more me.
I’m organising getting help with my mental health but it is a long wait for anything, so I’m glad I’m taking the steps early before it becomes an issue. What I’ve been struggling with most which surprisingly isn’t the isolation or anything that I’ve been through the last three years or at least not a major contributor. The major thing is the inability to get walking and adventuring, when I first tried back in January it was still too soon and way too sore, it wasn’t enjoyable when I done anything and felt like a complete chore.
This time round not that things were much different, I’ve just learned to manage and control things a lot better with timing meds and what I can and can’t do. The main trigger for trying again was getting out for the Perseid meteor shower, I got the proper camera out for the first time in near four years got the exposure length, focus and all that set up and used the remote trigger to just keep snapping away while I sat there looking up.
It was awful for meteors and pictures but just sitting there looking up for two hours on the sun lounger in the middle of the night felt right. From then I knew I wanted, and pretty much needed to get out properly again to take pictures and explore. I managed a few short trips and taking a few days’ rest, I’ve gradually been building it up to more and more challenging things and increasing in frequency too. I’m still at a point that where after I’m pretty damn sore but the next day things are not as bad and I’ve been able to do things again rather than having to rest a few days.
After going on an adventure, mentally I feel better and my mood is generally so much better and looking back over the pictures always makes me smile remembering different locations for different things. Some places I have been have completely changed from what they were like before some just exactly as I remember them. It’s been great though. But with the highs are the lows and they follow pretty quickly, as I said the pains are pretty bad. My leg, back and chest are all still playing up pretty bad.
When I initially start walking, I’m not in too much pain but there is a gradual build up in my back and stomach and after a while it’s too much and have to stop and stretch out. My leg is sore pretty much all the time but it starts off bad and eases but the odd time I just get seemingly random sharp pains, and there are a lot of ways I can’t move the leg because it is sore.
When I’m sitting around my legs are mostly ok but again if I get up to do anything, agony. There are times depending on the seat that it feels like the bone is being pulled out of the socket at the hip or knee. That’s definitely not pleasant and when I’m lying down if there is pressure on my thigh it feels as if the leg is bending. At rest my back is the big problem, if I’m sitting somewhere with no back I gradually slouch more and more and then my stomach gets sore and the back tightens up. If I’m leaning on something where there is pressure just in the wrong places it feels like someone is pulling at your rib and every so often this slow increasing pain comes along, it starts off as nothing and gradually builds up. This feels something along the lines of what I think a hot poker gradually moving closer and into you back.
Lying down can be a real nightmare, lying on either side the pressure on the ribs causes pains and the same on my front, on my back it’s not much better, the pains in my back stomach and legs, if it’s not one it’s the other, or the other. If I time things just right or am so tired I just pass out are always the best options to get a good sleep.
Despite the pains though the last few weeks have been pretty good, I’ve certainly been more me again which is nice, out adventuring and socializing with new and old friends and much more to come, I planned a trip four years ago but was never able to get it done, but now it’s the perfect time of the year to do it so I’m tempted…Tuesday 2nd August 2022
What to do
Tonight, would have been a nice night to talk to someone, I was at hospital today and all issues which I’ll get to. I was reacting to something in the house, the cleaner was in yesterday and despite getting cleaning products that are all plant based and no chemicals there’s something that’s triggering my cough and lungs to bung up. There was nothing worth watching on tv and so I decided to go over to the pub to see if there was anyone there I knew to chat to and get away from the house for a bit.
I opened the windows and went over and sat outside but there was no one there I knew and ended up just watching whatever was on the tv. It was too cool outside so I ended up going inside which was grand to start with but when a couple of people left the bar staff went over to clean the table and pretty much straight away I started bunging up and started to cough.
I wasn’t gonna wait around until it got too bad and pretty much the second I left I started to feel a bit better. I got in the house and despite the windows being open I started coughing again and stood outside for a while and put on my air filter. Rather than just standing out there in the cold I thought I’d be best coming inside again but again coughing straight away.
There’s just no relief from everything, if I’m not reacting to something I’m sore and if I’m not sore I’m coughing which makes things sorer. If I eat I’m sore, if I sit I’m sore, if I talk I cough, the smell of cooking makes me cough, I can’t sit out in the sun, if I’m not in the sun it’s too cool, I’m getting fevers one of two times a day, when I try to sleep I’m sore, if I find a comfortable position to lie, I wake up and the pressure on different parts of my chest or legs is sore when I wake up, that is if I don’t wake up with a night sweat or wake up coughing, If I lie on my chair on one side I feel as if my thigh bone is being bent of I lie on the other the pressure on my back a the angle is sore, if I lie on my back I bung up and cough.
My release before everything was going out walking but I can’t even do that any more because it’s too sore and causing more issues, I just don’t know what I can do and the list of things that I can’t do just keeps increasing. As I said there’s just no relief at the moment.
At hospital today it was my normal check-up, I said about the leg pains again and they booked an x-ray of my knees and thighs and have ordered an MRI so hopefully that won’t be too long, they think it’s my avascular necrosis that has spread and getting worse. I also told them about the cough, fevers and not eating, not just the reactions to chemicals or smells but there seems to be an underlying infection that just won’t clear up completely and being immune suppressed and susceptible, it just won’t clear up and keeps coming back and so they’re getting in touch with respiratory to see if there is another long term antibiotic that might help more.
I told them about the GP and trying to get help with my mental heath and they are going to get advice from someone and trying get me a psychologist to talk to about things rather than going down the medication side of things, which I’d prefer, not only with all the complications of them but also to get to the root of everything rather than plastering over them and finding some way to deal with everything much better.
I need to find some way to make some sort of bubble that I can sit and relax in without being sore or reacting to things and at the moment I think the only way I can do that is sitting outside in the cold. I may end up just sleeping outside, which I probably could do with my camping equipment, but it’s finding something that I won’t be sore and the second I move I know I will be.
I’d just like some form of relief for a while, me and the doctors just can’t seem to find any way to do this though.