So, I think I’m finally starting to get the hang of this PoTS thing. For the first time in ages I finally feel like I’m recovering and I definitely think that this is down to the exercise I’m able to do now. I honestly can’t believe how much more active I can be now; I’ve not used my wheelchair or commode for over a month.
I’m so relieved to be able to say goodbye to the wheelchair. I know I have it if I ever need it again and it’s been such a help, allowing me to carry on with life and get out and about, but I’m certainly not missing it! I’m also able to cycle on my exercise bike for half an hour most days which feels pretty amazing!
The big news though is that earlier this week I managed my first run since last November. I say run, I’m sure most people could walk faster if I’m honest. It was harder than any run I’ve done before and very slow; I didn’t get very far, but at least it’s a start. My heart rate went sky high but thankfully recovered after half an hour or so of lying down drinking water by the pint! I’ve had to tailor my exercise regime around when my highest dose of Ivabradine is due so that I’m getting maximum benefit from my medication.
I’m feeling so much better at the moment which I’m putting down to the fact that I’ve been able to increase the amount of exercise I do. I feel almost human again! I’m mainly only struggling with the extreme fatigue, lack of appetite and nausea and I had a pretty bad bank holiday Monday as I woke up vomiting but I didn’t feel too unwell after so can’t really complain.
Hopefully it’s onwards and upwards from here!
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!