Well it's been more than a little while since I last put in an appearance around here, and for that, I can only apologise. Project Puppy has rather taken over my life, and in a good way; I'm not sure what I ever did without him. I'm still meal planning, still cooking, but something had to give somewhere to make room for the mental energy that Luka has required, and that's largely been my blog, or any sort of writing at all really. It's paying off, so far he is turning into a really nice dog, proving (relatively) easy to train, and great company.
I've definitely made some biggish steps forward over the last few weeks, I'm consistently riding once a week, and for a little longer. I'm walking twice as far now as I was at Christmas - still only twenty minutes, 1km or so, but a big improvement, and my head is starting to feel less foggy. I've been better at pacing myself, knowing that I have to conserve enough energy for a short walk at the end of the day. I can't afford to be a dribbling wreck, sprawled on the sofa unable to move, as I have a (not so) little black bundle that needs to be taken outside every hour or two, and will want to play at the least opportune moments! It's a bit like new mums are taught - sleep when the baby sleeps - when he's quiet, I try to use that time to switch off, read, watch TV or have a snooze myself. It's been about the must-do's rather than the could-do's recently, and that's been a good learning point in itself. The former includes things to keep my head in the right place, like riding, or cooking when I feel up to it, but also recognising that a pack of stir fry veg and a ready made sauce are a perfectly adequate substitute for a stir fry made totally from scratch.
I've also been having some physiotherapy. For the first few months I was out of hospital, I had periodic visits from a physio who gave me some pilates exercises. Over time this fell by the wayside, as it was more about me working through them on my own, and of course, I stopped doing them. My sarcoidosis consultant stressed the importance of exercise for combatting fatigue when I saw him in early January, and referred me again to the local NHS physio service. This time I couldn't escape so easily! I had a consultation a few weeks ago and we discussed my hypermobility, among other things. Having denied that it really affected me, apart from the POTS, she ran through the simple scoring system used to diagnose it. When I came out with a score of 7 out of 9 ("normal" people are less than 3) and the comment "I'd say that you're PRETTY hypermobile", before I knew it, I'd been signed up for a specialist course they were running for hypermobile people. (In case you want to know more about the condition, here's the link.)
The first session was a real wake up call, as even the simplest exercises were difficult (standing on one leg and lifting your other ankle to the side for example). Having felt that I'd made good physical progress since Christmas, it was a reminder of how weak I still am. My first reaction was ostrich-style denial - my head firmly entrenched in the sand. I did none of the exercises I'd been sent home with before the next class a fortnight later, hoping that if I ignored it, it would go away.
The second session I had as part of a group with two ladies in their fifties - nothing like a bit of competition to motivate me, and since then, I have been diligently doing my exercises every day. Joking aside, I think I needed time and space to get my head around having another 'project' to fit in, on top of making room in my life for Luka. It helped that the second session included shoulder exercises, and having broken my arm badly in a riding accident a few years ago, it was obvious that these could really help. If I could manage to do those ones, why not the core, knee, ankle, and hip ones too. These could only help my riding, as well as walking and general rehabilitation.
It has been a struggle: I am still finding the exercises really hard, and I'm waking up every day with aches and pains. This could be walking a strong puppy, the reduction in my painkillers several weeks before, or just my body being tested in ways it hasn't been for more than two years. Any which way, I have my final physio session this afternoon so will discuss it with the staff there and take some advice from them. Reducing the painkillers felt like a small goal in itself, so I'm reluctant to put the dosage of these back up, but will if I have to. Waking up hurting all over is depressing in itself, and I don't want it to limit what I feel I can do. On the other hand, pain is the body's way of telling you to take it easy. A difficult one.
And now here's a circular argument for you. It was established during the tests at the Brompton back in January that my adrenal gland isn't functioning properly; probably the result of being on long term steroids. I saw an endocrinologist last week to discuss this, and the outcome? Increase my steroid dosage, to replace what the adrenal gland should be doing....... Huh? This wasn't up for discussion, it was more like a direct order.
How do I feel about this three days on? Miserable, depressed, worried, anxious, a little frightened. This increase tips me back into the higher dose end of the range, rather than the maintenance level that I was on. I'm already on stomach tablets, statins, and calcium supplements to counteract the damage that steroids can do, and now there's a chance that I could be on them forever. Not definite, but a strong possibility.
It didn't help that when weighed before my appointment, I'd put on two pounds since my previous hospital visit two weeks before. Not a life changer but slightly depressing none the less. Just as I'd started to relax about food, not worry so much about what I was eating, enjoyed puddings, it crept back on. And now to be told I had to increase the one thing that contributed most to my weight gain in the first place. Fucking fantastic.
I don't want to get back into the endless stress about everything I put in my mouth, the guilt, crying every time I get ready to go out, the body issues that long term readers will have heard far too much of. I will try not to let this get me down, I really don't want to fall back into that very dark hole that I've been gradually crawling my way out of.
My aunt has recently had to start taking steroids and her consultant lectured her about the benefits of eating low GI foods (steroids change the way your body metabolises sugar). I had been warned to stay away from refined sugar when I was first prescribed them, but hadn't thought of this in the context of GI before. So, I'm off to do some more research courtesy of google. Yet more mental energy, plus extra thought required for meal planning, but here goes.
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