Wednesday 17th April 2024
Title Unknown
Hi everyone, hope all is going well. Not really too much to update on this end but thought I would anyway.
After getting the news of the timeframe I seemed to be in a much better mood and a bit more content with things. For things that I’ve actually done or tried to do it’s been very minimal. I don’t particularly want to go out anywhere or do much apart from doing the usual stuff in the house like watching tv, films, reading and a bit of gaming too which I’ve been increasing this year from what I had been doing.
The games I have been focusing on had been the Metal Gear Solid series and completed 1 and 2 mostly getting the bonus items and the extras and then I moved on to Tomb Raider and have got most of the trophies for the first one and have been working through the 2nd one. I did stop playing for a while as I just wasn’t feeling up for it.
This was similar for the reading, I just hadn’t been in the right frame of mind to read, being tired and drained and distracted. It was just too hard to focus on it and I didn’t bother, then I started back on the audiobooks and now I’m back to actual reading again over the last couple of days. I just need to find somewhere nice I can sit and enjoy a good book without being interrupted or being anywhere too noisy.
I’ve been watching quite a lot of films and some really good ones, others have been pretty poor, again it’s pretty annoying when you’re really getting into a film and then people come in and just start having a conversation and then you can’t hear a thing. With my tinnitus I am not good in noisy environments and I can’t distinguish individual sounds from each other and so it ends up it’s just noise. As nice as it is that people want to spend time in the same room, it’s not nice that it interrupts what you’re doing.
I was doing quite well at tolerating other people until that happened and it really put me in a mood for a few days, I’m just not used to people being there all the time. I never had liked it and growing up any chance I got to spend time by myself I did but now rather than people doing what they normally do in another room they decide that they want to sit in the same room as me. And even that can be annoying, like at home if there was football or sport on I would sit and read with it on in the background but if someone else comes in and sits just watching what I’ve got on you feel obliged to actually have to watch what’s on instead of that just being on and then me doing what I want to do.
If I am watching tv I don’t mind putting on stuff that they would want to watch as well as there is a bit of an overlap in interests. Petty but I find it really annoying.
During the appointment with the surgeon he asked me if I’d been walking without the brace on which at the time I had only been doing a little bit, more to check how the leg was doing than actually walking around without it. After that I decided well maybe I should be walking around the house without it, and so I did and have been since. The first few days my knee was getting very sore as it seemed to be bending backwards too much but as time has gone the muscle seems to be in more control and not pulling it back as much or the knee has got used to it.
Now I feel fairly confident walking around the house with the brace or crutches. Going outside I would always put it on as something as simple as a breeze or a dog banging the wrong part of my leg would make it collapse and I’d be on the ground.
Last week I had an appointment with the physio, I wasn’t expecting much from it as the physio in the Cancer Centre had given me a load of really good exercises to do and they were helping. It was mostly filling in forms and going over history, unsurprisingly. I did have a laugh as of all the checkboxes, maybe about 20 like “heart problems”, “chest problems”, the majority of them were ticked and then after they gave 2 lines for If you’ve checked any give more details… would need 2 pages rather than 2 lines. Then medication too. But I just give the details of stuff that actually matters and very brief as they just skim over it anyway.
After going over the history we went over the sheet that the physio in the cancer centre had given me, a few minor tweaks but no real changes. Helpful to be going over it with someone to make sure I was doing it right and the variations might target certain muscles a bit better but nothing much different from what I was already doing.
Of course after people were thinking well maybe that’ll start getting the nerve to work… Which is incredibly annoying as that is not the point of the physio, the physio is to help the muscles around from deteriorating and wasting away, there’s nothing they can do to make the nerve work apart from giving it time and the “why don’t you do *this* it might help”… cause I can’t do that because the nerve doesn’t work… It might kick start it, it won’t though cause it doesn’t work… until the nerve starts working there’s no point, once it starts working THEN I can start doing that exercise… *pulls remains hairs out*
I don’t think much will change with the physio until the nerve starts to work, I’ll be doing the same exercises and they don’t take long to do so I’m not sure what else the physio will be able to do. They did give me a smaller brace to help stop the knee hyperextending backwards but it was uncomfortable and after doing a bit of walking and straightening the leg, checking it it didn’t actually lock so to me it didn’t appear to actually be doing anything so I haven’t been bothering with it and with the knee not being sore either is quite helpful.
I have been trying to get some advice for a mortgage, only from the one place but they haven’t got back to me so I’ll try somewhere else and hopefully they’ll be able to help a little better. It’s strange I’m happy where I am but there are issues that make so I’m less independent and have to rely on others which I’m not overly keen on.
I don’t mind asking for help but every time I have lately, they haven’t listened to and decided to do things that they think would be helpful rather than what I asked. And I can’t really complain because they’re doing a favour.
It would be nice to get home again, just to my own space. I have physio again tomorrow and then next week and then I may see about getting back home again then as hopefully there will be at least a week before any other appointments when I would need a lift, I could always try and get the bus but it’s very awkward and I would much prefer to avoid people and the risk of getting infections and then getting supplies in I would either need a lift to the shop or get someone to go to the shop every few days… see above.
Not being able to drive is a real pain!
And the car insurance needs renewed next month which at the moment is a complete waste but needs done.
The leg itself seems nicer(?) it’s not as sore around the knee and can put weight, while lying down, on my hip so it’s much more comfortable at night, the sensation though I don’t think has changed much, I can feel inside ok but when I touch the surface I can’t feel it and the areas all seem the same but I’m experiencing it day to day whereas other would see the changes over a week/month etc and there would be a bigger change in that period, but would they remember correctly as to what it was?
All in all things are reasonably good all considering, I’m getting used to what I can and can’t do and am happy enough, whether there’s actual progress or not I’m not so sure but it’s being able to cope with how things are and then when things improve, great.
Until next time.Saturday 6th April 2024
Step Forward
So as it turned out it wasn’t me or the infection that put my mum in hospital but still not great she is feeling a lot better and home and seems to be more a scare than anything else. Apart from some new meds I hope things will settle down for her.
For me things finally started to improve, I was feeling better and there’s always a stage when I know I’m ok and I change gear and start to be more active and show that I am able to get home ok. It turned out that it was parainfluenza that I had, a cold. So all the antibiotics didn’t really do anything and it cleared up on it’s own as it was a virus.
One of the last days after the antibiotics was finished and they were waiting on word from respiratory I was out with the physio and I felt more motivated to show I could go home, I was able to walk down to the gym do all the exercises and would have walked back but she brought me back to the room in a wheelchair. Then more exercises in the room, which the doctor came in to watch and seemed quite impressed what I was able to do.
The next day I was allowed to get home which was a relief, not that things are much different from being in hospital, sitting around not doing much, but at least at home I can have a bit more freedom and the food is much nicer, although not as nice as home home.
Things continued on for a couple of weeks, I was doing the exercises which the physio in the cancer centre game me which were much better than the ones in Musgrave gave me, they gave me 3 to do and one I wasn’t able to because of the muscle not working. The Cancer centre physio gave me 3 pages with about 6 on each, one page for standing, one lying and one for sitting down. So so so much better.
I wasn’t pushing myself too much though, I knew I was more able than what I was doing, but I wasn’t taking any chances and being cautious. The last week or so I’ve started doing more without the brace on my leg, but there are times still when I do have it on I can feel the knee go, not loads but it just needs to happen once when I’m not wearing it and I’ll be on my ass.
The leg is still numb and the muscle to straighten the leg still doesn’t work but the exercises have been helping keep the other muscles in check. With what isn’t working I don’t believe there has been any change in that, but I went to see the surgeon on Thursday and he thought there was an improvement, I’m not so convinced.
With the “improvement” it’s a very good sign according to the surgeon and he was pleased with that. I had a CT done while I was in hospital but at the time they were checking for an infection so the surgeon was getting someone to have a look at it in regards to the nerve itself.
Later that day he called back to say that the nerve was all good, there was no damage to it and nothing interfering it. Which would mean that it should make a full recovery he was asking his colleagues about patients with similar issues, people all made a full recovery and were able to walk without any aids and were able to manage without the brace but there were some with a lasting weakness there and that recovery was slow.
I asked how slow was slow and he replied months and gave a couple of examples, the first was a year and the second was two years, which seems a more realistic timeframe than the four weeks that had passed two weeks ago with no progress.
At least now knowing a timeframe it is more possible to plan something than just waiting. The main issue is driving, I can’t drive and if I want to, I would have to get an automatic, which is incredibly annoying as I got a new car less than a year ago. Where I live, I would need a car to get to and from hospital and I can’t get deliveries to the house so would need a car for shopping. Taxiing would be very expensive, and unreliable.
Another option is to move, which could finally give me the push to get my own place rather than renting. It’s all just a bit of a mess atm, I had a quick look the other day to give me an idea but apart from that I’m just giving myself time to let the emotions of the whole thing subside before making any decisions.
I’m not annoyed or anything about it, if anything happy that I know more and can plan things rather than just waiting. I am lucky that I have options though and may actually end up being a good thing in the end.
We’ll see how things go though so interesting times ahead. Would be nice if the leg started working but then I wouldn’t have to change anything. Watch this space I suppose.