I’ve not written in a while as I’ve been getting on with the serious business of going on holiday. So now I’ve been home for a week or two recovering I feel it’s time for a little update!
Firstly, I’ve been but in the support group for my ESA, which for those who don’t know, is A GOOD THING because it means I get my benefit payments for 6 months before being reassessed. Hopefully by that time things will be a little clearer in terms of where/when I’ll be back at work. It should at least tide me over till Christmas.
Secondly, I’m able to manage over 15 mins on the exercise bike every day which feels like such an amazing achievement! I know I shouldn’t get ahead of myself but I’m really desperate to start running again and I’m hoping it won’t be too long!
Overall I feel I’m slowly improving but I still have major dips symptom wise. I have the odd occasional day where I feel almost normal again but usually the next couple of days I pay for it! This happened in the first week of our family holiday to Scotland, where things got so bad I had to spend 4 days in bed which was unbelievably frustrating. Thankfully by the second week I was much better than I ever expected and even managed some sort walks. Intriguingly I was by the sea, and I always seem to notice a slight improvement when I’m on the coast although it could just be a co-incidence!
I had a 24 blood pressure monitor on last week, only 10 months after it was first suggested….. I’m waiting to find out the results of that but hopefully everything will be normal as I didn’t have any major symptoms that day!
Other than that I’m just taking life slowly; visiting the odd cafe, crocheting, drinking gallons of water and enjoying the sun while it’s out.
I’ve just come back from a weekend away in the lakes with some lovely friends from uni. I was a bit apprehensive of how I would manage, and was also worried about having PoTS symptoms around people who know me from when I was well. I’m used to the reaction from people that because I don’t look ill, I must be fine.
I needn’t have worried because I couldn’t have asked for a better group of people to spend time with. They let me go at my own pace, have lots of naps, cooked and took me out in my wheelchair for which I was so grateful.
We were staying on a working farm and there were two very cute hand reared lambs in the field next to us, as well as free range chickens who seemed very keen on trying to break into the house whenever the door was open. I was proud of myself as on the first day I managed a short walk (we took my trangia and made a brew half way round for a cheeky break!). The next day we went for the day to Conistion Water but I wasn’t leaving the wheelchair behind for that! We were really lucky with the weather too, with blue skies and gorgeous sunshine.
In terms of how my PoTS was on holiday, I had all the usual brain fog, headaches, nausea, aches and pains and dizziness. I felt extremely fatigued and had to have naps where I was flat out comatose on the sofa for hours at a time. I found the third and fourth doses of ivabradine didn’t even touch me with horrendous palpitations throughout the afternoons and evenings. I could barely stand and felt really bad that I was unable to cook or wash up or generally be useful because I’m one of those people who like to get stuck in and help out. I do feel very lucky though that I was well enough to be able to go and very appreciative of my amazing friends. Love you all!!
The exercise bike will have to wait yet again whilst I recover, especially in this heat. When I arrived home I was so tired I could barely speak, and I slept for two days. Now I’m dragging myself out of that hole and managed to go for a gentle swim in our local lido today with my cousin. The heart palpitations are back with a vengeance! It was so worth it though because mothing can compare with spending time with good friends. I needed the change of scenery and some time away independent of my family (lovely though they are!).