Once again I find myself apologising for the length of time since my last post. The last few weeks have been a blur of appointments - medical and otherwise, family stuff, social things and general getting ready for Christmas. There have been a couple of knocks, but also perhaps, and I'm almost afraid to say it for fear of jeopardising anything, a little progress.
I do feel as though my stamina has improved; I'm more able to cope with being out and about on consecutive days, and I'm definitely walking better and for longer. Generally I've been managing to ride once a week, and whilst I'm still not riding for longer than 15 minutes or so, I do feel stronger in the saddle. Hacking around The Small Block still eludes me. I hate hacking to a particular point and turning around for fear of creating a nappy horse reluctant to go any further, but I vary where I turn and Heralie is so laid back that hopefully I haven't stored up problems for the future. She is amazing, and still seems to be coping with her extremely light workload without getting at all fizzy or silly.
Abi has made a remarkable recovery from her illness and it seems as though she has beaten the odds. Having been so sure we would lose her within days, it has been great seeing her go from strength to strength. Two months on, she is back to her previous weight, and the shorter hair on her belly where they had to clip her is the only reminder of what she's been through.
And now for the not so good news. I found out last week that my application for funding for the neurosarcoidosis treatment has been turned down by my local PCT. Whilst I had suspicions that that would happen, particularly as I had been waiting for six months for an answer, it was still a big blow. I have an appointment at the Brompton on Monday and hopefully will find out more - why it was turned down, whether there is any chance of appeal, what happens now etc. We hadn't discussed what Plan B looks like (actually I think it's more like Plan J or K) as it might have been academic, but I expect it probably involves more time on the current treatment - Plan Wait and See. Six weeks, or even three weeks ago it would have been even harder to stomach, but having made a little progress recently, I can see that that course of action (or inaction) has its own merits.
In my last post I mentioned switching pain killers and the problems it had caused. Having weaned myself back off the new ones, for a month or so, I managed without taking either of them. I was thinking more clearly, I'd lost that bleuuurrrrgggh feeling I live with a lot of the time, I'd even started to lose some weight. My body was generally coming back to life, but this was at the cost of nearly permanent headaches, nausea (probably helped with the weight loss) and regular migraines. After much deliberation, I conceded that the only option was to go back on the pain killer - it is regularly prescribed to prevent migraines, and had been for me in the past. Several doctors have looked at me as if I'm crazy, the conversation going something like this.
"So you've taken this before for migraines?"
"Yes"
"Did it help?"
"Yes"
"And you started getting them again when you stopped taking it?"
"Yes"
"Now you're taking it again, have they stopped?"
"Yes"
.........
For them it's a no brainer, but for me it feels like a defeat. I hate that I'm back up to 11 prescribed lots of medication (plus one non prescription). Even crossing one off the list for a short while felt like a victory. I saw a glimpse of feeling more normal, and the door has been slammed in my face. In the week or so I've been back on it, I've put a couple of pounds back on, my head is once again foggy and I struggle to wake up in the morning, every process, both internal and external, slower and more laboured. I'm still not convinced that taking it again was the right thing to do, but I couldn't live with the migraines and constant nausea either. I hate that it is so out of my control. I'm on a much lower dose that I was on previously, so I'm hoping that the side effects will settle down as my body adjusts to it.
So there you have it, some good news, and some not so. I'm hoping that I get some answers from the consultants on Monday, but at the same time, trying to adjust to the idea that sticking with my current treatment may be the only option. At least the steps forward seem to outweigh the backwards ones for the moment.
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