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.
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!).
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.