onwards and upwards

It’s well over 2 and a half years since my diagnosis. And an age since my last blog post! I’ve been meaning to write this post for a long time, but life has got rather busy. So much has happened!

My partner and I have bought a lovely house, which wasn’t as stressful as I’d expected, apart from the multiple gas leaks, holes in the roof and co-ordination of various tradespeople. I’m looking forward to being able to enjoy all our hard work in the coming year, now all the major work has been completed.

I also suffered one of the other delights of living with pots and hyper mobility-dislocated knees! (Yes, two!) I often get partial dislocations but never before have I actually dislocated something. It was flipping painful, especially the first time where we were in the middle of nowhere on a walk, and they really do take a long time to heal.

Despite this, I am still trying to walk at every opportunity, as it is the main form of exercise that I can tolerate. It’s also been fun exploring the area we have moved to through walking.

The first injury coincided with our house buying, and it all culminated in a bit of a flare-up. This then resulted in me making the difficult decision to go from full time to working 4 days a week. I do feel so lucky to have been able to manage for so long full time. But I realise now I’ve moved out of my parents house I’ll need to be able to manage my symptoms much more carefully. And anyway, I was finding I was having to call in sick a few times purely due to PoTS, and that alone stresses me out meaning my flare up gets worse!

Working part time has allowed me to be able to look after myself much more, and rest when I need to. This means I have that little bit more energy to do interesting things with my weekend, as I know I will be able to rest during the week. I’m also very strict with my days off-I do the absolute bare minimum which means I can nap whenever I want and usually feel much more able to get through the week. I’m usually too exhausted to do anything even if I wanted to anyway!

I feel I’ve come so far, both physically and mentally, since I last wrote a blog post. I’m comfortable with the fact that my career has taken a different path, and whilst I’ll always think about how life could have been, that’s ok. Life is different, but in a good way. Perhaps I’m able to enjoy life a little more, in the slow lane. Seeing things from the perspective of someone with a chronic illness has certainly made me realise how lucky I am, and I can’t really say I have any regrets. Yes I have been on a huge learning curve, one which I am still learning from today, but I am thankful for every day, no matter what it brings.

new year

Just a quick update now a new year has begun! Things are looking a lot more positive than this time last year. I have a diagnosis, can manage my symptoms and hopefully am not far off going back to work.

Being able to manage my symptoms while working will be very challenging but it’s something I want to do, having been off work for so long, even if it’s not quite what I expected I’d be doing a year and a half after qualifying as a nurse.

I can’t believe how things have changed since this time last year. In early 2017 I was still waiting for a diagnosis, in fact had only just heard of PoTS, but was sure I’d be working again in a couple of months. Little did I know things would first get worse before they got better, and that I would be off work for such a long time.

2018 has started off in a much more positive way. I’ve been able to enjoy celebrating Hogmanay in Edinburgh, have had a weekend away in the Peaks walking, and visited friends and family. I’m so grateful to have amazing and supportive people around me and am also glad that I am getting to make the most of my time off now I feel well enough to enjoy myself. It’s been a long journey to get to this point and it’s taken a lot of patience, determination and perseverance. I know that while I’ll still have ups and downs symptom-wise, I’m now in a much better position to get through the down parts.

So now all that’s left is to wait and see what there is in store for me jobs wise (oh I forgot to mention, Occupational Health have finally cleared me as fit to work, in a desk based role rather than clinical nurse, so I am just waiting for a meeting regarding my redeployment to a new job with my manager and HR) which seems like a huge step in the right direction!

lambs, lakes and laughter

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!).