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.

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!

making the most of it 

It’s been a while since I last wrote and I’ve been very busy! I was originally waiting to write this blog post after having a meeting about going back to work with HR/my manager however that meeting which was scheduled for October kept being rescheduled and finally happened last week.  

So here we are two months later than planned! The outcome of that meeting is that I am unlikely to be able to go back to work as a nurse, as although (in my PoTS nurse’s opinion) I am doing really well in terms of managing my symptoms, I can’t stand for more than 15 minutes before becoming very symptomatic. That doesn’t bother me in my everyday life as I have become very good at working round this, but clearly it’s not ideal if you have a job that requires you to be on your feet all day (or night!). So I’m waiting to see if I can be redeployed to a desk based job. Meanwhile I’ve also sent off a work capability assessment form as I’m being reassessed for benefits. As I’ve improved so much in the last couple of months, I’m extremely doubtful as to wether I will continue to get benefits. This is extremely frustrating as they will no doubt assess me as capable to work, when work and Occupational Health are assessing me as incapable to work! 

In more happy news, I’m able to make the most of my time off by spending my weekends visiting friends and family, and generally beginning to feel very Christmassy! Most weekends have seen me on a train to various parts of the country and I’ve got very adept at train travel with PoTS now! 

I’m continuing to manage my symptoms so that I rarely have a ‘bad’ day now. I don’t mean to say I’m symptom free, it’s just that I’ve got used to how to best manage the symptoms I do have, and to pace myself throughout the day. I’m beginning to recognise warning signs that I’ve overdone things and can slow down accordingly. 

For example, it’s getting easier and easier to keep on top of my fluid intake as it’s a natural part of my daily routine now, which is a big help in terms of keeping hydrated throughout the day and really helps reduce my morning brain fog and dizziness. In the winter I’m also finding it easier to keep a constant body temperature and not get too hot, which is helping me not develop symptoms due to overheating.

It’s all getting a bit easier to manage as I’m getting used to the changes I’ve had to make in order to get this far. I had a cold last week which made my PoTS symptoms resurface with a vengeance so it’s not all plain sailing but it’s definitely a positive step forward. 

looking through rose tinted spectacles

Nearly a month since my last post and I’m still running and cycling on the exercise bike! I almost can’t believe it but I can honestly say the only symptoms I have at the moment are brain fog and fatigue, which can both be severe at times but it’s a massive improvement and more than I could have hoped for a couple of months ago. My episodes of pre-syncope are very rare and usually only happen if I’m late taking my medication or get up out of bed too suddenly.

I made it to Wales for the weekend to visit a friend and apart from a few necessary naps felt pretty normal. We visited beaches and pubs and it was lovely to explore somewhere I’d never been before.

The long train journey home took it out of me especially when the person sat in my reserved seat wouldn’t let me sit down but thankfully the guard found me an alternative. Frustratingly that extra 5 minutes stood up trying to reason about my seat really exhausted me and made me feel really ill for the rest of my journey; I could barely stand by the time I’d made it home, but the whole trip was well worth it.

I’ve also got my pink/purple tinted glasses from the opticians. They’re really helping with my light sensitivity and reading even if they’re maybe not the most fashionable thing I own!

In other news I now own a massive 6 cup teapot so that’s at least 1/4 of my daily fluid intake sorted!!

feeling accomplished!

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!

a little update

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.