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.
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.
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!).
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!!