It’s been a while since my last blog post, mainly because there’s not that much to say. I’ve spent a long while sleeping, I’ve seen various relatives and friends. I’ve done a bit of gardening, crocheting and political campaigning but not had much luck with the exercise bike! We’ve decided to have a bit of a rest from each other but I’m hoping to start again soon.
At the moment fatigue is definitely the worst symptom I have, with brain fog a close second. I’ve just not had the energy to do more than is necessary, and I’ve found it really hard to balance what needs to be done with what I want to do, because at the moment I just want to do everything and am finding it hard to say no! I really miss things like getting out into the countryside for long walks, especially now the weather is (supposedly!) warming up. I’m lucky to have a corner of the garden which is shady and cool, so when I feel able to go outside it’s a lovely little corner to read in even on hot days.
When I have good moments I try to take advantage of them and I plough on regardless. This leaves me unable to do much for days afterwards as I’m paying the price for my over-enthusiasm! I’m still learning my limits and getting used to being on medication, and have found myself worrying about going back to work. This is because I had hoped by now that going back to work would be a realistic goal in the near future. However the reality is that it’s going to take me a little while longer yet. I seemed to have reached a bit of a plateau in my recovery, as although I’m not getting any worse, I’m also not getting any better, making my goal of getting back to work feel like even more of a distant prospect.
This is a scary thought especially as it’s such an ‘unknown’. When will I be able to work again? Will I be able to carry on with my job? Will there be anything suitable for me to do if I have to be re-deployed elsewhere? So many questions which for the time being I’m trying to put to one side and focus on getting better and remembering to have a bit of fun too while I’m at it!
Let’s just say this week hasn’t gone quite as planned! I started off so drained after my last blog post. In some ways, applying for benefits is just the next positive step in the journey of getting well enough to go back to some sort of work. In other ways, it’s a horrible experience because it means admitting to myself how differently things have turned out to how I planned even though I like to turn a blind eye and think otherwise. When I left uni I’d assumed by now I would be working full time, planning holidays and travelling with friends, and moving into a place of my own. (I like to think of my time off as a kind of extended Christmas break. Shame not everyone is in a festive mood!). It also doesn’t help that the process is so confusing and feels like they are trying to catch you out at every step.
Last week I’d spent more time on my exercise bike than in my wheelchair, but this week the wheelchair has won hands down! As well as the usual, I’ve had some pretty horrendous nausea (luckily no vomiting this time, but there were some close calls!) lots of aches, pains and cramps and some truly awful levels of fatigue. Basically back to how things were before my diagnosis. I know my limits and this week was not going to be a week in which I pushed myself! I’m putting it down to the fact that I’m always worse in the week before and during my period, and that I’ll be able to power through when it’s all over. In fact I’m wearing my exercise gear while I write this as if I’ll be motivated to go and spend some time on the exercise bike later!
Highlights of this week have been making it to a gig with my family and going to a close friend’s birthday Ceilidh. There’s been a lot of laughter this week and I appreciate these moments with people who are special to me, friends and family. I’m so lucky to be able to get out and about even if it is in a wheelchair and it does take me a while to recover, it’s worth it to be able to feel normal for a little while. It’s also been fun binge watching TV with my siblings and baking (everything I’ve made this week has had baking paper stuck to it, proof that I’m not learning from my mistakes!!).
Here’s to a better week, I’m looking forward to the warmer weather (well the PoTS part of me isn’t but I am!!) and hopefully the exercise bike won’t be so lonely this week.