Saturday 27th May 2023
Hip Hop
Hi everyone, hope you are all keeping well. It’s been a couple of months since my last post, I’ve left it so long as there hasn’t been much to update on, I’ve not been able to do much even driving which I was hoping to be able to do more of.
Just after the last post I got my new forest passes for Tollymore and Castlewellan (and the other ones included) to go and spend a bit of time there, even if it is just to sit and read in the car with a change of view from normal and when I’m feeling a bit better go for short walks and a bit of fresh air, although I haven’t really been able to make the most of it yet.
Things weren’t awful or anything but a couple of weeks later, just after a hospital appointment, we decided to reduce the steroids a little to my base level. I started getting a bad cough again and was just gradually getting worse over the following weeks. It was always much worse in the mornings when I woke up and gradually started to play up in the evenings too, always when I lay down to go to sleep, I would wheeze and cough and cough until it was all cleared. It always seemed to be that my nose was just gradually seeping down into my throat thankfully never seemed to get into my lungs and although I’m still coughing it’s much better than what it was a week ago.
Any time I try to do anything I get really short on breath, especially if I’m carrying anything up the stairs, the extra weight just seems to tip things and is too much for me, I just can’t seem to get enough breath into me and have to stop for a while to recover afterwards. This has definitely been a lot worse since January when I was in hospital and I don’t see that improving much any time soon especially with not being able to get out walking or anything.
My main issue though at the moment is the pains, for a while with coughing so much my ribs and back were getting sore and it was sore to lie down and even sitting if the pressure was on the wrong places, it would get pretty sore. Even worse than that though is my legs, the groin on each leg is extremely tight and sore. For long enough I’ve been trying to stretch them out but even when I’m able to stretch them well simple movements can be incredibly sore. Bending my legs up is really sore as well, picking things up or putting on socks or trousers can near be impossible and getting in and out of the bath tub just can’t be done at certain times. Even lying down if my leg is at the wrong angle, it’s incredibly sore. When I’m sitting down and just move the legs ever so slightly it can just catch in a way and any movement is sore but as soon as I straighten my leg and put it back to where it was it seems to make it ok again.
I can’t really turn my legs so turning around is quite funny in a way that I take about 3 or 4 steps just to face the other way and can’t really shuffle to the side. I had an appointment with my osteoporosis doctor about getting my yearly infusion but needed to find out what the orthopaedic doctors had planned first before going ahead with it, it was the first time someone had mentioned surgery on my hips and on the phone call in conversation he mentioned about the MRI scan I had late last year, he said about a fracture in my left hip. I was never told about this, not that it would have made much of a difference but I may have been a bit more cautious, not that I was really doing much anyway and I can’t remember any period of when there was a sudden change of when things got worse.
On Wednesday I was sitting watching tv and got up to go to the toilet and it was agony, like so much worse than before. I couldn’t put any weight on my left leg and I didn’t even have the power to lift it more than an inch off the ground, thankfully I had my walking stick beside me and I was just about able to manage. I was hoping going to bed and getting sleep it would be feeling better in the morning but the whole night it was sore and I didn’t get much sleep, I already hadn’t been sleeping great with all the pains and the stairs were a real challenge.
The next morning it was still really bad and was concerned I may not be able to drive or more so getting down to the car and into it as driving is mostly ok as I use my ankle for the pedals rather than my thighs. I had my appointment with the orthopaedics on Thursday so in a way I was glad it was playing up as they would see me at my worst, the number of times when something is wrong and, I dunno if it’s the adrenaline or whatever but always feeling much better when you’re seeing the doctor.
I got an x-ray and the nurse was incredibly helpful, he seen that I was struggling and was able to help move around and was patient with me. I was pretty much straight in to see the doctor after, although while I was waiting on the x-ray I noticed that it was Mr rather than Dr on the signs, so it would be a surgeon I was seeing. Before anything it was pretty clear that he was intending to do surgery, and got me up on the bench to try different movements, he didn’t even need to ask if the different moves were sore as it was pretty obvious from my reactions, not just on my face but the way my legs and muscles reacted to the pain.
He told me there was more on the left hip that had collapsed than on the right and they would both need replaced, the left being first and then the right once it was healed enough. Because it was so bad, he has put me on the urgent waiting list which is about a year. So in a way I’m glad that I was so bad that day, and it has been gradually improving each day since but still pretty sore at least I can use the leg a bit now.
After the orthopaedic appointment I had to go and get a covid booster and have to go back again to get my bloods checked cause I’ve ITP.
Last Tuesday was my regular hospital appointment and infusion, I told the doctor about the cough. The chest was clear and she said I had something along the lines of “runny nose syndrome” which sums it up really, although I think I did have a bit of an infection at one point, it does get worse when it’s raining too. They forgot to order my treatment so had to go back again on Friday for that, when I went back on the Friday and after a bit of a wait they told me that it wasn’t ordered and had to wait around longer than I would have liked, rather than being a max two hours I was there for four and just wanted to get home. But sorted and done for another few weeks.
The week before I went to look at a car, the one I have is just starting to feel a bit unreliable, I didn’t really intend on getting a new car but thought I’d have a look at this one anyway and start looking for August when the insurance was up. It was a Jeep compass, it was nice but it just wasn’t me and didn’t really suit what I needed, it was difficult to get in and out of. While there I got my car valued and they told me the coolant was leaking again and some other issues and that was it, I was getting a new car while I could still get something for it rather than it going and getting nothing.
After the experience of the bigger car I knew I would be better getting a small car, made a list and on the Friday I went to look at a few different ones I had picked out. Where I had parked was round the other side of the showroom for one I was going to see which would have been a wait until September to get and on the way back seen a Suzuki Swift that jumped out at me but I went to another place to look at another couple of cars, neither really done it for me and I thought it would be best that while I was in the area to go back and look at the Swift.
Having a nosey round the Suzukis the Swift was nice but felt the Ignis was more me and the salesman came out and blah de blah he took me to see one of the new models, as soon as I seen it, I quite liked it and went out on a test drive. Next day I phoned to order it, had to go back on the Wednesday to get my car valued but as I knew different things that were wrong with it, I done a few things to errr “paper over the cracks” and got a much better valuation. Picked up the new car on the Friday, so I now have a nice wee Suzuki Ignis.
The Last couple of months have been pretty stagnant at best, anything I do or try to do is a real chore. I try to get as much as I can in one run and then if I forget something or just don’t have the energy to do something I get annoyed, and then I get annoyed when I have to do it another day. I’m quite easily irritated lately, which irritates me that I’m getting irritated. I don’t like asking people to do much for me, but I know when I have to. If I was to let people do things for me I’d end up doing nothing which wouldn’t do me any good, so I keep on trying to do as much as I’m able to even though it takes me longer to do pretty much everything, I’m that slow.
I don’t really see things changing much over the next while but hopefully the leg will improve enough that it’s not quite as sore and be able to get an interest in things rather than just being a vegetable with the pain meds in front of the tv.
Until next time.