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!

how many spoons?

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!).

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!

good things come in small packages

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.

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.

diagnosis: day one

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.

new wheels

My wheelchair has finally arrived, thanks to Dave the DPD man! You might get a picture later and I’m still thinking of a name for it. So mum and I decided it was time for a trip out. Word of advice, don’t move to a city known for its seven hills if you need a wheelchair. We found this out today the hard way. I do trust my mum in a lot of things, but I have to say I was worried about her taking me down the huge hill by a main road to the centre of town. ‘Don’t worry’, she told me. ‘I used to push you all the time in a pushchair when you were a baby’. I replied that I wasn’t exactly the same weight as I was then. We were half way down the hill when she said ‘You certainly arn’t’. Ouch. Thanks Mum.

So we made it to John Lewis via a few other shops with only minor hiccups (involving kerbs mainly). Luckily I have a seatbelt but I do wonder if I need to invest in a helmet too…

We mooched around for a bit then got to a tiny set of 5 steps, so I got out and helped mum carry the wheelchair down rather than look for a lift. Que horrified shop assistant coming over to let us know there was a lift available if we wanted next time. We found this hilarious, to her it must have looked like mum had made me get out to carry my own wheelchair. I promise you it was a be there moment!

We were both exhausted by this point so went to the cafe for lunch. After, mum headed off whilst I had a lie down. You know it’s a bad day when you’ve been in a wheelchair all day and you still find yourself needing to lie down (laughing emoji, crying emoji). I heard a small child on the next table ask her mother why I was lying down. She said ‘Oh that lady must be very tired’ and I swear the elderly couple next to me (to be fair they were sitting further down on the bench, closest to my feet) tutted. Actually tutted. I wanted to shout ‘Hey, I know I’m wearing sunglasses inside and I haven’t been able to wash my hair in a while and my feet are all sweaty from being rammed inside compression stocking tights but I’m not hungover I promise’. But then I realised that I’d rather go to sleep so I did.

Then it came to my attention that a crowd of people where peering down at me, including members of my extended family and weirdly, Graham Norton and Mary Berry. They were asking what the hell I was doing lying on a bench in the John Lewis cafe in the middle of the afternoon. I told them all to f*** off (which is most unlike me I assure you) and went back to sleep.

We came home on the bus. I was so exhausted and I wasn’t even the one pushing the wheelchair! I’m now collapsed in bed while my poor mum makes tea. I’m feeling really bad about swearing at Mary Berry and wondering why Graham Norton was dressed as Father Christmas at this time of year. Surely the Easter Bunny would have been more appropriate? Think it’s time for another nap!!

the waiting game

5 months ago life looked pretty good. I’d survived 3 years of a nursing degree and had just started my first job which I was loving. It was hard work and I was pretty exhausted but I figured it was worth it.

A month or so into my new job and I was having have these episodes were I would come over really dizzy and hot and I would have a strange sensation of not being able to concentrate or hear what was going on around me, almost like I was in a bubble. I would have to go and sit down, but there were usually no seats available and we were working 13 hour shifts with only a couple of short breaks. I’d find a quiet corner and put my head between my legs till the sensation passed.

This was nothing new as I was used to feeling exhausted during uni when juggling placements, assignments and my social life and I’d even fainted a couple of times too. I remember telling previous mentors how hard I was finding the fatigue and would be told it was something I’d just have to get used to and it was part of shift work.

So I was getting used to working life and super excited at the opportunities ahead of me when out of the blue I had an episode of vomiting and diarrhoea. It really knocked me off my feet but I was looking forward to having a week off, I thought I’d be able to shake off the persistent fatigue I’d been feeling for so long and have a bit of TLC, and get back to work with a bit more energy. Despite trying my hardest the next week I had to be sent home from shifts as I felt so faint and dizzy. The weeks passed and I still wasn’t able to walk or stand for long without feeling faint and near to passing out despite my efforts to keep myself active.

I realised things were not going to get better on their own so I went to my GP for a sick note. I found it difficult to describe my symptoms to the doctor but had noticed that at times my heart felt like it was racing and I was constantly dizzy, nauseous and fatigued as well as being unable to walk very far or stand for long. It felt a bit like having the worst hangover ever whilst still being a bit drunk! The doctor ordered bloods and asked if I’d ever heard of something called PoTS (I hadn’t). I never saw that doctor again, all my bloods came back normal and I was advised I was probably recovering from something like norovirus with post-viral fatigue.

Another couple of weeks later and I was back for a new sick note, a different GP decided I must be suffering from anxiety, no matter how I tried to convince them I had been enjoying work. We did agree that I probably still had lingering viral related fatigue and I had some more bloods to rule out thyroid problems. I had high blood pressure and a very fast heart rate so I was booked in for a 24 hr ECG.

One weekend I felt so horrendous that I ended up at the local walk in centre, who triaged me and sent me to A&E due to my high heart rate, high blood pressure and chest pains. I was kept there for the evening but my bloods were again all normal. In fact the A&E Dr even said my blood results were probably better than his! It was a bit of a mystery so I was sent home to wait for an appointment for a heart echo (ultrasound scan) and to see the cardiologist.

A couple of weeks later and a new GP appointment with a different GP for (yet another) sick note. This time the GP was more thorough and wanted a 24hr urine sample to test for a kind of tumour, as well as a referral to the Cardiology outpatients clinic. She also mentioned PoTS and something called Inappropriate Sinus Tachycardia. I’d started to ask my mum to come along to appointments as I was struggling to recall what was said each time and I was feeling so awful I didn’t want to go alone. I was also having difficulty articulating things and knew mum would be able to help me answer questions.

Another month passed and I went to my cardiology appointment expecting to be seen by a doctor but instead saw a specialist PoTS nurse who was lovely and asked me lots of questions as well as checking my standing and lying BP and HR. She wasn’t sure if there was any major changes but due to my answers to her questions she booked me in for a tilt table test. She asked me if I was flexible or bendy and I said no, but when she tested me I was in fact hyper-mobile in quite a few of my joints which was a surprise!

I got some compression stockings which seemed to help a little, and finally looked up PoTS to see what all the fuss was about. All of a sudden things started to make sense, and I began to realise perhaps PoTS could account for other symptoms such as blurred vision, light sensitivity and the resulting headaches that I’d been experiencing my whole life, as well as the fainting, dizziness, fatigue and nausea.

So I began to feel like things were heading in the right direction, Occupational Health were helping me put a plan in place for when I was ready to come back to work, my manager was being really supportive and I’d had the echo and tilt table tests (finally!). The tilt table had not been my favourite moment of the day and I’d had to ask them to stop the test before it had finished. The lovely staff had mentioned how it must have been torture for me but had said they had got enough information for a diagnosis. They were unable tell me my diagnosis as this was up to the specialist nurse or cardiologist but had given me plenty of leaflets about PoTS which gave me a hint as to what my diagnosis might be!

All I was waiting for was an appointment for my formal diagnosis and some treatment that would hopefully enable me to go back to work in the next few months. Things were looking up and thanks to the compression stockings I was able to get up and about nearly every day. I had another bout of D&V (weirdly identical to the first) but recovered fairly quickly. I also had the 24hr ECG which found everything was normal, apart from a significant increase in my heart rate when I had got up in the morning, and at certain points throughout the day, peaking whilst in the supermarket. I was enjoying this new level of activity and even decided I was feeling well enough to visit some old housemates from uni. I’d felt really isolated after over 3 months of being off work and was looking forward to feeling a bit more normal and taking my mind off things.

I was craving some independence so I went to visit them on the train, pacing myself and making sure I didn’t do too much. I really wanted to get back to work so figured this trip was going to be a step in the right direction in terms of recovering to a point were I was well enough to return to work. How hard can it be?! I got the bus even for short distances and we spent the evening watching films. I went on to visit my sister for the next evening and we relaxed with a takeaway and more films, but when I arrived home on the Sunday I realised my mistake. Monday morning came and I felt terrible but had to get up for my GP appointment for another sick note. It was like the mother of all hangovers (shame I hadn’t even had any alcohol!) and I wanted to curl up and cry in the GPs consulting room before the appointment had even begun.

I was told this time by the GP that I needed to go back to work as soon as possible, that I couldn’t possibly have PoTS as I’d had such a high BP in A&E and that I should stop bringing my mum to appointments. I was also told I was just ‘deconditioned’ after spending that 24 hrs in bed with suspected norovirus all those months ago. Reading between the lines I felt I was being told I had anxiety issues and that getting back to work would resolve all my symptoms. I felt particularly hurt at being told I shouldn’t bring a parent along with me. This was because I was struggling with my loss of independence and was finding it hard enough having to accept help from them. If I had a choice I would certainly not at 21 be taking my parents everywhere I went!!

This was devastating for me as I’d thought I’d finally found a GP who was taking my symptoms seriously and she was the one who’d really pushed to try and get a diagnosis. I had a little cry in the car on the way home and decided as we’d moved house anyway it was time to find a new GP surgery.
Gradually, although I was trying my hardest to keep active and occupy myself, my symptoms were deteriorating to the point that I couldn’t manage to get out of bed every morning. I was having to crawl to get to the loo in the night as I couldn’t bear to stand up and was wearing sunglasses to try and prevent the daily headaches. Some days even the compression tights were not enough to get me out of bed. If I had a shower I needed to sit down, and I found that having showers or baths tired me to the extent that it had to be the only thing I did all day.

So, just over 4 months after this all began and I’m still waiting for that follow up appointment that will hopefully result in a diagnosis and treatment plan that is not just the ‘3L water and a bit more salt’ advice I’ve been following for months. Despite all this I’m feeling positive about the future, and am sure that soon I will start to get the answers I need. I am also thankful I have a supportive family and friends around me who can put up with me 24/7!