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!).
Today I attempted to apply for benefits. After 60 minutes listening to a loop of 8 bars of Handel’s water music the last thing I wanted to hear when I got through was ‘>sigh< hmmmf >sigh< good morning my name’s …… this call will take 60 further minutes of your time do you still want to continue’. 10 mins in and they’ve given up on me and decided to send my forms in the post (they read out a paragraph of info I was required to listen to about postal forms, but so fast it sounded like when they read out small print at the end of an advert. The gist of it was if I now try and ring up to apply for benefits rather than fill in the form I will be fed to ravenous lions by Theresa May or something, it got a bit confusing at the end).
It turns out I got my security questions wrong because I moved house before christmas and the system still hasn’t updated yet. So I was given the choice of ringing up again and being on hold for 60 mins and then lying (I mean giving different answers) when asked my security questions (?!) Wow. Not wanting to spend another 2 hours on the phone giving ‘alternative facts’ to the department of work and pensions
I chose a form instead. Which I imagine is going to be great fun and I’m really looking forward to it coming next week (they’re sending it 2nd class to really prolong my enjoyment and anticipation!).
I’ve not written in a while because the last fortnight has passed in a blur. I woke up the day after my last blog post and madly decided to take the next step: exercise! I have seen research that claims exercise is the single best thing you can do to manage PoTS symptoms, but knew this would be impossible to start without the help of drugs to allow me to tolerate exercise.
As I was now on medication I decided the time was right and it felt good to unpack all my old running gear (yes I still hadn’t unpacked them from when we moved house!). I’ve started on an exercise bike because I can sit down and go as slow as I want. I’m not going to see the benefits for months yet, so it will be worth it in the long term, although realistically in the short term it’s leaving me worse off. 15 mins on the exercise bike is leaving me in bed for the rest of the day!
My eventual aim to to be able to run again but the eight month plan I downloaded from the dysautonomia international website for PoTS patients advises to wait until month 5 at least before starting upright exercise. It feels good to have something to work towards though, and it feels like I’m achieving something positive.
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.
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!!