Hi everyone, hope you’re all doing well still, been an interesting enough couple of weeks, the back continued to improve over the weekend and I was starting to get pretty able and spending more time back at home home. On the Sunday my sister organised a bit of a birthday treat for me to get to see some of my friends, first time in 2 years getting to see them together.
The Monday was my actual birthday, I had been looking at the Yorkshire Vikings cricket top but something stopped me from ordering it, turned out that my aunt who lives in Yorkshire bought me one for my birthday, was a pleasant, unexpected surprise, thank you very much!!
Everything was going pretty well, but when this happens, I always get doubts in my head as I know things always even out and is always pretty consistent with me so something was bound to happen soon enough. One of the reasons why I never get too excited about things or look forward to things to much, not in a downer way just in a realistic way, good things never last for too long, but then neither do the bad things.
I went to bed that night and up at hospital the following morning. It had been a whole week since my last visit there as things were all pretty stable and have been for a while now. They want to reduce the risk factors of catching anything (not just covid) they would prefer I wasn’t up there as much or out doing too much with other people so I wasn’t surprised when they said that it would be two weeks before I had to come back again. They also didn’t feel the need to give me the anti-fungal infusion, Ambisome, and so rather than spending an extra two hours at hospital each week (increasing infection risk) I get to go home instead.
It would be another week till the reduction of the Microphenolate which would mean that I’m completely off it. The Microphenalate is an immunosuppressant and affects the blood counts quite a bit, the platelets have been consistently about 20 something or others, a “normal” person is about 150-300 although with having ITP anything over 50 was good enough for me. When everything was “fine” for me my normal counts where about 120 if I remember correctly.
It will be another 6 months before the effects of the Microphenolate completely wear off, it will be interesting to see what the counts all stabilize at. I’m able to manage ok with the lower platelet counts, it’s not something I’m unused to and similarly with a lower RBC count, I’d obviously prefer to have a more normal count so I don’t have to limit myself on things I can and cannot do, although wouldn’t surprise me if the WBCs were the next thing my body decided to attack.
So in regards to the whole Lymphoma and Bone Marrow Transplant everything has gone pretty well, counts are stable, drugs reduced, no real reactions to things and able to cope ok. The next step in regards to these things is the fitness, muscles and fluid retention. This will come in time when I start to get moving around more and start doing a bit of walking, exercising and general day to day things.
Although as already mentioned I don’t get too excited about things, the above is all great and everything but… there’s always a but, although mine is pretty non-existent with having minimal to no muscle at the moment… I woke up on the Tuesday and was sore, the back again and the whole time at hospital I just couldn’t get comfortable at all. What doesn’t help are the seats in the hospital, they aren’t the most comfortable of seats and the curve on the backrest just hits my ribs the wrong way, and the bottom part isn’t exactly comfortable either. I dunno if it actually made it worse at all but there was a definite gradual increase in pain in my back, even when I got home it was gradually getting worse and worse and by the evening was as bad as it has been.
This continued for a few days, I pretty much lived on pain killers and lying down but then the sofa was too hard and hit the ribs at the wrong parts and got uncomfortable, in bed the bumps just hit the wrong places and wasn’t comfortable. Sitting was grand for a while but the pressure on my tummy then got uncomfortable. Pretty much anywhere or way I sat was grand for a short period and then got sore or uncomfortable. The worst part is moving from one of these positions to the next, getting the right technique where it is least painful or timing the pain meds is key to being able to move around freely for a bit. Not easy though.
Friday I was hoping to get to a wedding ceremony but everything was way too bad and still getting worse. I decided to go home home as the chair there gives me more sitting options and the bed doesn’t dig into me as much. The massage on the chair helps loosen the back up a bit too. The lift round to the house was pretty damn sore with the movement in the back so I was quite pleased that alone that I had decided not to go to the wedding as I would have been in the car for over 30 mins which I just couldn’t have coped with, sitting and moving around there would have been impossible. I was thankfully able to watch a stream of the ceremony and seen a few of the speeches too which was great to see, just a pity I didn’t get to see everyone.
The Friday evening, I went to bed fairly early and just relaxed not having to move around too much, similarly on the Saturday and Sunday, the back stopped getting any worse but was pretty sore. I was starting to get techniques of getting out of bed, shuffling in the chair and getting up out of the chair that were less painful and sometimes not painful at all on the rare occasion, but most of the time it was pretty bad and lingers for a while after too.
On the Monday I think it was, my back was pretty stiff so I lay down on the sofa to stretch it out and straighten it out a bit as I’m really slouching to help reduce the pains, with bones sticking out awkwardly. It was nice stretching but I knew getting up was going to be an absolute nightmare and would take a while for me to do so and most likely not be able to without causing a lot of pain. It was grand until I fell asleep and woke up bursting to go to the toilet, if I hadn’t have fallen asleep I would have been able to give myself some time to gradually get up but as I REALLY needed to go I didn’t have the time.
I wasn’t able to push myself straight up to a sitting position, it was way too sore, I managed to push myself off and ended up kneeling with my arms on the sofa and knees on the ground. At this point any movement I made was absolute agony, if I lifted an arm or a leg it was as if something was pulling my back apart, I was only able to slide side to side a bit. I got to a point where the choice was, wet yourself and stay like this or go for it and fight through the pain. I knew that if I took option one, I’d still have to go through option 2 so I went for it and OMG!! Ouch. I can’t remember how exactly I done it the pain probably blanked it out but I managed to get up and get to the toilet ok. I then got some painkillers, for the next hour or two the pain was a throbbing in my back.
Thankfully from the following day things have been improving, the pain has gradually been reducing and been loosening up and been able to get onto the treadmill a bit too. I will gradually build that up and then hopefully soon enough have the confidence to go walking outside without having to worry about distances, and if planning on going for a 20-minute walk, going for a 20-minute walk without having to push myself to finish it. At least with the treadmill at the moment if I plan on going for a 20-minute walk and decide 10 is enough I can just stop. Can’t do that when you decide you’ve had enough and you’re still 10 minutes from the house.
I do see the back being an ongoing issue, and I wouldn’t be surprised if I end up in a chair because of it. The rate and how often things have been going, there’s only so much the back can take before it’s too much. I’m not really too sure what the options are long term in regards to treatment and/or surgery. I have an appointment in September with my osteoporosis doctor and should find out more then.
It’s been a long time coming, with the long-term steroids causing most of the damage but the straw that broke the camel’s back, literally, was with the graft vs host reaction I took and having to go on the really high dosage of steroids. Not only did it set things back about 4 months or so, and make me go a bit crazy for a while, it was the tipping point for my bones to really cause that weakness and start causing the fractures.
I’ve been finding ways to adapt to things, mostly around shopping so far. I needed a bag to go around shopping with so I won’t have to carry anything and then there was getting that bag into the car, I’ve came up with a winch type thing that I can use my foot and weight to lift it into the car and out. Have yet to try it but think it should work.
I also need to get a string to hang down from the boot door so I can close it as it was a struggle enough before but now I’m a bit shorter and “more fragile” I don’t want to stretch and cause more issues, I had a look yesterday but there didn’t seem to be anywhere I could attach it to, I’ll find a way though I’m good at adapting.
The only other thing of note is the fluid retention, I’ve not been taking any diuretics for a few weeks but things were building up. A few days ago I started taking them again and each day since I’ve been loosing about 1Kg each day, today though things seem to have settled and haven’t been running to the loo every 15 mins so I think I’ve got rid of the worst of the fluid. Again once I start walking and doing a bit of exercise it will help with this too.
That’s pretty much all for now, I can see things starting to get back to normal again the only thing holding me back at the moment is the back, if it wasn’t for that I think I would be up and about and out walking already, but with the last couple of weeks and it playing up it’s been holding me back. Hopefully the next update will be about me being able to get out and things starting to build up, but let’s play it by ear and see how things go.