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.

back to work

Hello again!

I know it’s been a while but so much has happened in the last few months it’s been a bit of a blur.

I finally, finally am working again- I’ve been redeployed to an office role in an HR department. The picture above was taken on my first lunch break! It seems to be going well but it was such a shock to the system getting back into the routine of work. I was lucky enough to be able to do a month of very light admin work a couple of days a week that my previous manager organised for me so I’ve been able to go back almost full time into my new role.

So far I’ve surprised myself in how I’ve managed to settle in. I’m very exhausted and achey and have had a couple of days full of intense symptoms at work but I’ve coped and new colleagues are being very understanding which is a massive help!

I have an emergency draw full of salty snacks, a huge water bottle, a desk fan, ginger tea (for the nausea), and cans of coke (I don’t know why but on the rare occasion I’m feeling really bad but I’m out and about and can’t go for a lie down, a can of coke, which I would never normally drink, can really help with the brain fog and pre-syncope especially, just until I can have a lie down). My pink tinted glasses are also a miracle worker as I have to spend my day staring at screens which would otherwise give me headaches, contributing wonderfully to my brain-foggy state!

I’ve discovered the key to surviving the working day is to eat little and often (rather than a big lunch in the middle of the day), take things as slowly as I can, have frequent breaks to make drinks and visit the loo, and use my lunch hour to sit with my feet up and a cup of tea. And then once I’m home I do as little as possible and go to bed early in the hope I’ll have recovered enough to go into work the next day!

I also have a shower and prepare everything-my food, drink, bag and clothes-the night before so that my morning preparation only involves eating and getting dressed. And if I’m too tired to have a shower in the evening then there is always the saving grace of dry shampoo and some baby wipes!

I’m still coming to terms with the fact I am not pursuing my dream career as a nurse and I am finding it difficult to accept that it may be for the best in terms of my health. However I’m just so relieved and glad that I can work at last and am so grateful for everyone who has helped me get to this point-the health professionals, those at work, as well as family and friends and my lovely boyfriend.

pacing

Although I know I have moments when I feel much better I also have days when I feel worse again. I think it’s probably due to the fact that thanks to Ivabradine I can stand more so I over-do things and end up feeling worse.
I’m really frustrated at myself today because I had a really busy weekend, but I’ve spoilt it today by having a bath this morning. I’m having to recover all day in bed which is a shame as it’s a lovely day outside. Oh well, tomorrow is another day!

Pacing is something I need to get used to, and to help me I have a few ‘cheats’ to get me through each day.

• Commode. Or as I like to think of it, my en-suite. I use it overnight, and as my Granny said, in her day everyone used chamber pots and it’s not too different to that!
• Shower chair. This piece of equipment has been life changing!! I’m so excited by the fact I can now have showers.
• Wheelchair. I was apprehensive about using a wheelchair especially if people see me getting out to go to the loo, or if I’m well enough to walk for a bit. The thought was much worse than the reality though, as it means I can go out even on not so good days, and for longer periods of time. My family are going to be so fit by the time I’ve finished with it!
• I’ve also got a seat in the kitchen, I don’t really have the energy at moment to cook but it’s useful waiting for the kettle to boil!