So had a temporary hiccup and consequential lapse of reason / loss of sense of humour at the beginning of this week upon receiving the results of my bone scan, which I had already decided in my head would be fine. I genuinely did not expect the degree of bonelessness that it revealed which has been a huge wake up call. This illness has now become potentially life changing and not in a good way. I honestly believed I was invincible so the confirmation of inner fragility was quite a shock. Plans for going skiing this winter and my goal of finally buying another horse when I recover have clearly been scuppered for now so I am now devising alternative methods of conquering the world. Hopefully the osteoporosis may be reversible to some extent though I am walking around at the moment fearing I may trip and part of me fall off.
Since forever, when stressed my go-to comfort has always been to skip meals (who needs food when they are a super-hero?) so I have fallen off the tightrope a bit this week, though am now feeling tentatively better. On that theme I thought I’d reinstate the stiff upper lip and visit some positive thoughts:
Reasons to eat:
1. Social interaction. Self isolation and anorexia go hand in hand and at my worst (and this persists on a bad day) , it takes far too much effort even to reply to a text message, crazy though it may sound. Last week, the farrier came to trim the ponies’ feet when I was at home, and rather than calling someone else when I saw him lurking by the back door, I went out to see him, caught the ponies and we had a 45 minute conversation about politics. Sounds like such a small thing but significant (for me) nonetheless. Later in the week, I spoke to someone at the practice nets in the village rather than diverting around 2 fields and through the graveyard to avoid them. I am usually quite sociable, and at work, client contact is the part of my job that I enjoy the most, so this compelling desire to avoid people is both contrary to my personality and torturing.
2. Restoration of health meaning life can be resumed as normal as much as possible including pushing the boundaries simply for the fun of it. (Climbing mountains in flip flops, galloping horses on a beach, sledging round trees, running out of control down a hill….)
3. Being able to watch a film or TV programme all the way through without lapse of concentration and ending up not knowing who killed who and why.
4. Being able to sit down comfortably. Boney bum + hard chair = ouch.
5. Not having to cover all parts of body in hot weather because they look truly awful.
6. Being able to go back to work so I can feel useful and not simply be a parasite.
7. Being able to buy clothes without worrying I may get fat and grow out of them.
8. Not spending half my life in a hospital. Six weeks is already six weeks too long.
9. Being able to plan ahead more than a few days, and not having to ask permission to wee, have a drink of water, have one measly paracetamol, go on holiday……
10. Being able to eat without considering the calories. (Though the last time I did this was probably in the 1980s)
11. Realising I can still have fun without running round at full pelt (see below)
12. Throwing away the bathroom scales because I JUST DON’T CARE..
Vegetable patch (or slug party venue)
Family fake tattoo night
Makeshift croquet lawn (sorry ponies, you’ve been marginalised)
Apart from this, I have had my first 6 weekly review this week which helped me feel more positive as it confirmed that I am making some progress (woof, pat on the head). I know from the numbers on the scale that this is the case but it somehow helps when it is verbalised. Bit frustrated that holiday plans for August were not given the go ahead, partly because 2 weeks away was not recommended by the team for recovery (looking ahead does not seem within their capabilities) and partly because having a huge waiting list, they couldn’t keep my place open that long which is more understandable but still annoying. It may be that I am recovered enough to be discharged by then anyway but we can’t take the chance and book flights right now which only adds to the guilt of the effect this thing is having on the family.
I am now being increasingly affected by the attitude of other patients in the clinic and what at first was a novelty is becoming a never ending repeat of the same old issues. I’m seeing this as a sign that I’m getting better, but listening to fully grown people complain about the outrageous selfishness of others when it comes to yoghurt flavour choices has become more than a little tiresome. I fear institutionalisation because without the support I was failing to recover but the clinic environment creates a false sense of security by cushioning me from the reality of the world and this is something which is not sustainable. Nothing happens overnight so I just have to chalk up every meal as a win and get on with eating my way out!