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.
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!!
I won’t go into too much detail because there are websites out there that are much more informative and accurate than I could ever be. ‘PoTS UK’ is especially good and I would recommend having a look if you’re interested. In America they use the term ‘dysautonomia’ to describe when the autonomic nervous system goes wrong. As this includes PoTS you may find useful information by googling ‘dysautonomia’. There’s a website called ‘dysautonomia international’ which is helpful as well as plenty of other blogs.
‘PoTS’ stands for ‘Postural Tachycardia Syndrome’, also known as ‘Postural Orthostatic Tachycardia Syndrome’. You can also see it written as POTS, POTs and other variations.
Put (very) simply, it means that you get a really fast heart rate with a change of position (such as going from lying to standing, although mine goes fast when I sit for long periods as well as when I lie on my side). No-one is absolutely certain why this happens but it is thought to occur when the autonomic nervous system (remember that from biology?!) goes wrong.
The autonomic nervous system is responsible for a whole host of processes in the body from digestion to regulation of temperature and heart rate which in turn result in some weird and wonderful symptoms that are different for everybody which mean it can be very difficult to get a diagnosis.
Usually when a person stands up the body should adjust. The blood vessels narrow in order to force blood to overcome gravity and reach the brain and return to the heart.
It is thought that this doesn’t happen effectively in people with PoTS, that the blood vessels don’t constrict and also there is evidence to suggest that those with PoTS have up to a third less blood volume. To compensate for this low blood volume/dilated blood vessels the heart rate needs to increase. A lot. So even just standing can take a lot more effort and energy for someone with PoTS.
The reduction of blood to the brain can cause symptoms like fainting, headaches and migraines, nausea and vomiting, brain fog (the inability to concentrate or remember things, it literally feels like you have fog in your brain). I often get ‘pre-syncope’, a posh word meaning before-fainting. So I get symptoms as if I’m going to faint but I never do. For example when I stand up I can see spots in front of my eyes, I’ll feel all hot and clammy and sometimes everything will go black and my knees will give way, I’ll feel really sick and I’ll have to sit or lie down but I won’t actually fall over. I also get migraines and feel dizzy most of the time. Sometimes I don’t feel my increase in heart rate, but other times I do and get chest pain. It’ll be going so fast that it feels like I’m having palpitations and it can be quite scary. Especially when you end up in A&E having blood tests and being monitored to see if you’re having a heart attack!
There is some good news though, these symptoms can be relieved… by lying down. Which it is not always appropriate to do in a supermarket or shopping centre apparently. It is like a fight or flight response, and you get an unbearable need to lie down. Like in the sense you would turf an old lady out of her seat in order to sit down kind of survival mode. Not that I have ever done that, I might add!! I don’t know why but if I can’t lie down or am stood up for a while I get really irritable and feel unnecessarily angry, I’ll become withdrawn and can’t hear what is going on around me, and I become unable to speak to anyone as it feels like too much effort. It’s really strange.
The worst symptom I have at the moment is fatigue, I just can’t shake it off and standing for 5 mins to boil the kettle and make a brew wipes me out so I need to lie down for the rest of the afternoon. Heck, even sitting up in bed to type this is exhausting! I can’t sit though an hour long episode of Life on Mars without having to lie down 15 minutes in.
There are also other symptoms to do with regulating temperature, so you feel hot when you should feel cold and vice versa, I really struggle with hot temperatures and can’t cool myself down very well. There are also gastric problems (so problems with digestion) for example heartburn and acid reflux, some people find that cutting out gluten or dairy can help but make sure you talk to your specialist first. I get blood pooling especially in my feet which can be quite painful. Symptoms are different in everyone so I’ve mentioned the main ones that affect me but I’m sure there are plenty more out there!