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.
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.
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!