Last time I wrote about MS, I talked about how I was working to be less defined by having it, and the response I got from people was overwhelming, as always. Although I don’t want to have it as the main “thing” that I always talk about, I also recognise it’s why I started this blog and many followers of it are here to get some insight into life with MS, so I thought I’d post an update on things that have been happening in life and how MS has impacted it.
About the title of my blog. I cannot remember for the life of me who it was so I can’t give them the credit they deserve, but they summed up it up both perfectly and hilariously that MS is just BAU*. And it really is. It’s not the new thing. It’s not the main topic of conversation. It’s just BAU.
We’re going through a restructure at work at the moment which has included a lot of people taking voluntary redundancy. I’ve chosen to stay. A huge part of this is that my current employer looks after me so well. Add to that the (admittedly simple) adjustments I need along with a blood test slap bang in the middle of a Tuesday every four weeks for the foreseeable future. Yet I’m not made to feel like a pain in the backside. I wrote a post not so long back about my fear if I ever had to change jobs. I get that any employer would have to make those adjustments by law, but I’d hate to be made to feel that it was done begrudgingly. The other key reason is that I actually love my job. So right now, I see little point in rocking a boat that doesn’t need to be. Granted, it’s an uncertain time. We’ll inevitably have to change the way that we work but how that shapes up remains to be seen.
Whether how I’m currently feeling is being exacerbated by the current situation at work I have no idea, but my fatigue seems to be through the roof at the moment and it’s the one symptom I find hardest to just ignore. Oddly enough, as long as I’ve got something to keep my occupied, I’m ok. As soon as things slow down though, I need some matchsticks to keep my eyes open! This was apparent when I had to take myself off home an hour early on Friday. I’d done everything that I needed to do and I just needed to get home to bed. I’d thought that perhaps I’d out slept my fatigue last Monday. I felt great and smashed the greatest gym workout in a long time! I was back in my happy place with an Olympic bar. On days where my ankle hasn’t been feeling so bad, I’ve even managed to run a bit. I’d crashed again by Tuesday though and I’m just learning to not feel bad about not being so consistent with the gym these days.
I saw Danny for my monthly bloods last week. It’s the first time I’ve seen him since the last day of Lemtrada and I was feeling pretty pathetic in a hospital bed. It was nice to see him and have a chat. He was really reassuring and said that I’m doing good. I probably needed to hear that. I have no idea what my lymphocytes (white blood cells) are at though! Many people who go through Lemtrada can get a bit obsessive with it, but I’ve chosen not to get hung up on the numbers. They mean naff all to me anyway since I’m not a medical practitioner and I just trust Danny to let me know if there’s anything amiss. It’s easier to just forget about it and let the people that look after me worry about it!
In other news, I was “supposed” to be doing jury service this week and next. Those that know me and my background will understand why this was so exciting for me. I know you’re not supposed to talk about jury service, however on the basis that the defendant ended up acquitted before we’d even set foot in a court room coupled with the fact that there were no further trials for us, I think I’m pretty safe. In amongst the disappointment I’ve got to admit that there was a shred of relief. I mean – bowel urgency in a court room ain’t gonna be a good look! Plus, with no sign of my fatigue going anywhere, I was worrying about how well I would be able to concentrate on the case. In fairness, I was honest with the woman that looks after the jury early on (she’s got a proper title but I can’t remember it for the life of me!) and she was amazing about how we could manage it. So if you have MS and get called up for jury service, my advice would be to be open and honest. They want to support you as much as possible.
In more positive stuff, I am absolutely LOVING Reiki. I’m going to talk about it at length in a future blog post because it deserves lots of words and attention spent on it! I’ve also finally had the chance to write my blogs for MS-UK, who asked me to guest blog for them about three months ago. In an attempt to redeem myself, I sent them a couple of posts that they could publish. They’re edited down versions of blogs I’ve posted on here, as they only have a 400 word limit. As soon as they’ve gone live, I’ll link them up here.
All in all, I feel like I’m coming to terms with my MS more and more everyday. On the days when I’m not overcome with fatigue, I feel as good as I get. And I can’t complain about that. It’s still shit. It’ll never stop being shit, but I’m starting to notice the gifts it has given me. Which is a story for another time…
*If you haven’t got the foggiest what I’m on about, BAU stands for “Business as Usual” and it’s a term used in the corporate working world for you normal, everyday work. There’s nothing special, exciting or exceptional about it. It’s just your average day.