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!
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.
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!!
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!).
Let’s just say this week hasn’t gone quite as planned! I started off so drained after my last blog post. In some ways, applying for benefits is just the next positive step in the journey of getting well enough to go back to some sort of work. In other ways, it’s a horrible experience because it means admitting to myself how differently things have turned out to how I planned even though I like to turn a blind eye and think otherwise. When I left uni I’d assumed by now I would be working full time, planning holidays and travelling with friends, and moving into a place of my own. (I like to think of my time off as a kind of extended Christmas break. Shame not everyone is in a festive mood!). It also doesn’t help that the process is so confusing and feels like they are trying to catch you out at every step.
Last week I’d spent more time on my exercise bike than in my wheelchair, but this week the wheelchair has won hands down! As well as the usual, I’ve had some pretty horrendous nausea (luckily no vomiting this time, but there were some close calls!) lots of aches, pains and cramps and some truly awful levels of fatigue. Basically back to how things were before my diagnosis. I know my limits and this week was not going to be a week in which I pushed myself! I’m putting it down to the fact that I’m always worse in the week before and during my period, and that I’ll be able to power through when it’s all over. In fact I’m wearing my exercise gear while I write this as if I’ll be motivated to go and spend some time on the exercise bike later!
Highlights of this week have been making it to a gig with my family and going to a close friend’s birthday Ceilidh. There’s been a lot of laughter this week and I appreciate these moments with people who are special to me, friends and family. I’m so lucky to be able to get out and about even if it is in a wheelchair and it does take me a while to recover, it’s worth it to be able to feel normal for a little while. It’s also been fun binge watching TV with my siblings and baking (everything I’ve made this week has had baking paper stuck to it, proof that I’m not learning from my mistakes!!).
Here’s to a better week, I’m looking forward to the warmer weather (well the PoTS part of me isn’t but I am!!) and hopefully the exercise bike won’t be so lonely this week.