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.
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.
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!
The spoon theory was devised by Christine Miserandino, as a way of helping her family and friends understand how she lives with chronic illness. She writes about it in her essay ‘The Spoon Theory’ on her website ‘butyoudontlooksick.com’. I would recommend a look as it’s a much better explanation than mine!
Basically, each activity that you might do in a day uses up ‘spoons’. Even little things like boiling a kettle or walking up stairs. You replenish these ‘spoons’ through rest. A ‘spoonie’, or someone with a chronic illness, has to conserve these spoons else they will run out, but someone without a chronic illness pretty much has an unlimited amount of spoons to get them through the day.
If a ‘spoonie’ runs out of spoons they could borrow some from the next day, but this will leave them with less ‘spoons’ to use in the future.
To illustrate, yesterday I was so pleased that I managed to sit up all day without having to nap, and so in the evening I decided to have a shower. However, that meant borrowing a couple of ‘spoons’ from today (climbing the stairs and having the shower took more ‘spoons’ than I had left) so I’m paying the price now. It feels like a backward step as I had been feeling much better yesterday, but it’s a little reminder that it’s going to take baby steps (which is a bit longer than I’d like it to take!).
When I took my first Ivabradine it was so small I wasn’t even sure I’d swallowed it! It’s a tiny tablet anyway, but I have to cut them in half which is near impossible. It describes itself on the box as ‘salmon’ coloured. I was wondering if it came in fuchsia or teal but sadly not. Fun fact: pharmaceutical companies don’t like to make drugs a green colour because it’s considered unlucky. See, I have remembered SOMETHING from my nursing degree!
Ivabradine will obviously affect everyone differently, but so far I’ve experience headaches (normal for me), dizziness (normal for me, but occasionally it felt more like vertigo when the wheelchair would feel like it was moving when I had the breaks on; normally my dizziness feels like I’m looking through a haze). I have felt my heart rate slow, occasionally it’s felt really ‘heavy’ and pronounced, even more so than my usual palpitations. It’s a really slow acting drug though, which peaks after 30 mins and wears off after 4 hours.
I’m not looking forward to the most common side effect which is light sensitivity seeing as I’m very light sensitive anyway at the moment and am wearing sunglasses pretty much 24/7 so might have to become a mole or something. Lets hope that’s not a side effect I get (I mean light sensitivity, not turning into a mole. I’m pretty sure I didn’t read that as a side effect in the leaflet!). So far I’ve not felt a reduction in my PoTS symptoms but not sure if that’s because I’m feeling so extremely exhausted and rubbish at the moment anyway. Hopefully I’ll see some improvement in a couple of days when this ‘flare-up’ has settled.
Today’s been a big day. I was up bright and early (well it was early for me anyway, so before midday!) for my second ever appointment with the PoTS nurses. The day I’d find out if I had PoTS or I was a delusional mad woman making all my symptoms up for sh*ts and giggles like some GPs might have thought… It was no surprise at all to find out that yes I do in fact have PoTS. Which is good considering what I’ve called this blog.
In all seriousness though it was such a relief because there was always that niggling doubt that I’d turn up and they’d say hey, that GP was right, you really should be back at work there’s nothing wrong with you. Or hey, I know you only spent 24 hrs in bed that one time with D&V 6 months ago but you are just DECONDITIONED (I hate that word I’ve heard it far too often!) and there’s nothing wrong with you that a 30 minute run and some abdominal crunches won’t fix.
I won’t bore you with stats but during the tilt table my heart rate increased by quite an impressive amount (you need an increase of at least 30 bpm upon standing to be diagnosed with PoTS and I definitely qualified!!) and in the words of the nurse my bp was ‘all over the place’ despite only spending 15ish minutes upright.
Inevitably I’ve been started on a wonderful drug (well I’m not sure how wonderful it is yet, only had three doses!) called Ivabradine to slow my heart rate, increased my salt intake to 1 teaspoon a day (yuk) and am keeping on with the super tight compression tights and the 3 litres of water that makes me need to pee every 30 mins or so (not easy when you’re wrestling with the compression tights I can tell you!!).
The specialist nurse said today was like ‘day one’. It’s the start of things rather than the end. Now I have my diagnosis things can move forward and symptom wise can only get better. Well I can’t remember exactly what she said (thanks brain fog) but it was something positive and lovely like that!
So I’m feeling pretty good about things (well, symptom wise I’m feeling horrendous but you know what I mean!) …roll on the future!
note: I feel I need to clarify, the huge vast majority of GPs I’ve ever met are absolutely amazing and deserve much more credit than they get. I think part of the problem is the lack of awareness surrounding PoTS which means when people like me come along over a number of years with vague, random symptoms they don’t even understand themselves, it’s so hard to join the dots and get a diagnosis. There are so many health professionals out there who simply don’t know that PoTS even exists.