This has been in many ways the toughest times that I’ve had. Again, time has been somewhat elastic, so I’ll just go through what’s happening and what I know.
As you’ve probably already read, the steroids I’m taking are reducing the swelling which causes the pain in my liver capsule. But they don’t do this without taking, and it means muscle loss – the opposite of what you’d think of with steroids. So I need to ensure I don’t just totally lose all muscles in my legs (the biggest loss area), but it’s happening all over. I need to move regularly and try to do squats and so on to combat this.
But… as you also probably already know, I had a GI infection which knocked me for 6, and taking 3 weeks of antibiotics has cured that… but at some cost to my (already compromised!) digestive system. I’m eating – it’s the one thing I still have control over – but it’s not doing the good it should do, and part of it is that I seem to be malabsorbing. So that has been aided by extra Creon usage – which appears to be helping. But on top of that, my liver is obviously not working at anywhere near 100%, so it’s not like when you just eat and then half an hour later you feel OK. T and I are still trying to find what works, and it seems to change on a day-by-day basis.
And then we were discussing my lack of taste and then it returning with Rachel… and she said I could have had Covid! Because she didn’t expect such severity of taste change on the drugs I was on (although there are always interactions which we never know about). So…. possible difficulty level increase.
It’s been a real struggle over the last few days – since Sunday – as it’s really easy to sit here and think “I can’t get up” when actually I can, but the ghost of a couple of weeks ago is still there… and I’ve been surprised when I stand up and walk OK. It’s always uncomfortable at first (I feel a stretch where the swelling is), but it’s doable once I actually do it. So some of the battle is mental. But a lot of it is just plain physical.
Mornings are awful – there’s no other way to describe them. I’ll wake up and feel OK for maybe 5 minutes, and think ‘right, today is going to be better’. And then all the energy drains away and I feel terrible mentally and physically. So we’re working on how to deal with that. T’s suggestion of sticking to the original ‘light breakfast then more later’ is working, so that’s a go-er. But I’ll still feel ‘behind’ for all morning, and typically just feel thick-headed and incapable. So we’ve taken to watching things in the morning which gives breakfast a chance to go down and hopefully start getting to where it needs to be. I’ve also started having ‘sugar water’ which seems to work to give a boost – basically sugar in warm water.
And another level of extras? Bad back. My muscles needed some work – they just got tight, and you forget about all the ‘normal’ things that go wrong, but I was having problems standing up because of tightness. Usually I’d be a bit more aggressive and use the foam roller but it’s another thing where I’m not sure I’d get up again (I’ve been on the floor a few times when trying to put the bikes I need to get rid of back together), so I’m bit wary. As ever , T to the rescue with a couple of evenings of targeted muscle massage, and doing exercises I know work seems to have done most of the trick, but those are now on the list of things to do…
And in some ways that’s what everything has become. A task list. Things you have to complete. Otherwise things will definitely get worse. So I’m sticking to them as much as possible, but then you realise it’s really easy for someone else to add to that list without realising it, and the magnitude of doing so. If you get given a book, there’s a tacet job added to the list that I know I don’t have time to complete. So you put it on the shelf. It sounds ungrateful, but at this point, I have very little control over almost any aspect of my life. So I’d like to respectfully request that no-one brings me anything or buys me any presents that involve any kind of reading or assembly or anything like that. I really don’t need anything at this point other that love and support – which I’ve been getting in spades and I’m hugely thankful for that – and if you really want to do something, I can find you a job to do on one of the infinite number of things that could get done – like cleaning up a couple of the bikes in the shed (one of which is a really nice full-suspension Carbon MTB, the GIant e-bike that needs a bit of putting together before I can sell it), etc. That would be mega, but I know it’s not for everyone – for instance the megashed needs tidying up and clearing, the kind of job T and I would get done together if I was well, but it’s easy for it to be overwhelming – it was even when I was well!
Back to the health situation thought, sorry about the diversion…
We’re working on a routine which is a moving target, so I have lunch, meditate and then sleep. And then I have a coffee when I wake up and usually have a passable afternoon/evening… but yesterday the ‘behind’ just didn’t clear. Ended up getting some REALLY NASTY BIRD’S CUSTARD. Which I tried to explain to T was a completely different thing to the artisan, amazing tasting, restaurant-quality custard she made at the weekend. But I have to accept that there are some awful, cheap nasty things that I like. And that helped do the trick. She made it thick like you wouldn’t believe. And it was an absolute tacky joy. So that was nice.
My head didn’t really clear until about 9pm… and I probably didn’t drink enough water all day, so that’s the next tweak for today.
But yesterday’s biggest news was a real dissapointment in terms of gut recovery. After the antibiotics I know something needed to be done and How To Cook That had a new video out about gut microbiome and so on. And she was talking to an expert about it – I was hoping to find a magic bullet. But there just isn’t one. All the ones you buy in the shops don’t ‘colonise’, they stick around for a few days and then get flushed out. You need to take them regularly and there are some (limited) benefits from taking them, but they’re not a fix. Which was bad news. The good news was about a diet which is high in fibre which means the bacteria get fed rather than eat the mucus in your gut (which is what happens when you don’t give them fibre). There was a link to a recipe book, and T had everything except 1 thing in for one of the meals, so had that for lunch which felt good, and still had a decent amount of calories as well as lots of fibre. So there’s no magic bullet, but there is something that can help out and make the best of what you have.
And that’s all I can ask for at the moment, I think.
Again, going to follow the plan today – I’m really tired and actually a bit shaky – and make sure I eat properly. That’s all I can do. Keep on keeping on, and hopefully things will go up a bit.
I’m just hoping there are no more surprises in store – I’ve had more than enough difficulty raises thrown at me in the last few weeks.
And all the time in the background, T is working like a trooper. Getting everything done that needs to be done. Taking all the stuff to the tip that needs to go. Looking after me. Looking after Eddie. And being a host to whoever visits. I’m constantly in awe of how incredible she is.
Thanks for reading.
