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.

feeling sluggish

One of the symptoms of PoTS that I’ve struggled with is the constant feeling of being on edge. Because my Autonomic Nervous System has gone a bit haywire, my heart rate is going faster than it should when I change position (see: what is PoTS?). This means my body has panicked and gone into the ‘stress’ response, or ‘fight or flight’ mode in order to try and compensate. This response involves the release of norepinephrine, a type of adrenaline. This helps to maintain a high heart rate and then results in a general feeling of anxiety which is very frustrating especially as the body does not need to ‘fight or flight’. I’m wondering maybe that’s why I was drawn to work in A&E because when you’re constantly ‘wired’ with adrenaline a little bit more doesn’t really register! I’m also able to function with a huge amount of adrenaline in my system and you wouldn’t even notice because I’ll seem so calm. My body also has irrational responses to sudden loud noises like people shouting, the doorbell going or the phone ringing which is really annoying!

Ivabradine is not stopping my heart from jumping when I stand, but my heart rate (for the most part) is not getting high enough to make me feel anxious, and when it does it’s returning to a sensible range much sooner so I’m feeling really chilled out.

Its very strange getting used to my heart slowing down so much, it feels really heavy and sluggish, almost like it’s going slower than the rest of my body, so for the majority of this week I’ve been feeling really drowsy. Lots of napping has taken place!