So, I think I’m finally starting to get the hang of this PoTS thing. For the first time in ages I finally feel like I’m recovering and I definitely think that this is down to the exercise I’m able to do now. I honestly can’t believe how much more active I can be now; I’ve not used my wheelchair or commode for over a month.
I’m so relieved to be able to say goodbye to the wheelchair. I know I have it if I ever need it again and it’s been such a help, allowing me to carry on with life and get out and about, but I’m certainly not missing it! I’m also able to cycle on my exercise bike for half an hour most days which feels pretty amazing!
The big news though is that earlier this week I managed my first run since last November. I say run, I’m sure most people could walk faster if I’m honest. It was harder than any run I’ve done before and very slow; I didn’t get very far, but at least it’s a start. My heart rate went sky high but thankfully recovered after half an hour or so of lying down drinking water by the pint! I’ve had to tailor my exercise regime around when my highest dose of Ivabradine is due so that I’m getting maximum benefit from my medication.
I’m feeling so much better at the moment which I’m putting down to the fact that I’ve been able to increase the amount of exercise I do. I feel almost human again! I’m mainly only struggling with the extreme fatigue, lack of appetite and nausea and I had a pretty bad bank holiday Monday as I woke up vomiting but I didn’t feel too unwell after so can’t really complain.
Hopefully it’s onwards and upwards from here!
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!).
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!
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!!
The whole family is home for the Easter holidays which is lovely. We’ve devised a system of numbers because I find hard to explain how I feel. The scale goes from 1-10 and 1 means I’ve never felt better (haha what is that like again?!), and 10 is when I can’t even sit up in bed. I’ve learnt the hard way that it’s possible to feel ’10’ in Sainsburys/IKEA/John Lewis even if you felt well enough to leave house previously. You just have to hope when that time comes that there will be a handy chair to slump in/pile of rugs/shop display of soft furnishings somewhere nearby. The wheelchairs in IKEA are a lifesaver! Until this last couple of weeks a ’10’ was a rare occurence, however now it’s become the modal number (bit of statistics for you…). It’s become even more of a struggle to get out of bed even for the loo and I’ve had some horrendous migraines and nausea.
This morning (OK it was nearly afternoon) I was wondering how on earth I was going to manage getting out of bed when my wonderful sister came in with some breakfast in bed. It was amazing I can’t tell you how grateful I was!!!! <3<3<3
I’ve ended up ordering a wheelchair because I was getting fed up of not being able to go out with the family and also I have to admit because it would mean not having to crawl to the loo in the middle of the night. Instead my family will no doubt be kept awake by my attempts to navigate to the toilet in the dark in a wheelchair!! Mum I apologise for the damage to the paintwork in advance…
Anyway last night I was lying awake trying to distract myself from the crazy palpitations I’d just woken up with and I was wondering how giraffes manage-I mean their hearts are much further away from their heads so why don’t they keep falling over or walking into things or lying in useless heaps whimpering to themselves? I need some of whatever they have!
So I googled it and apparently giraffes have HUGE hearts that can withstand crazy high blood pressures, and they have really elastic stretchy blood vessels to force blood up against gravity, and extra valves to control the flow of blood to the brain so they don’t get too much or too little blood flow in the head. They also have sponge-like tissue in their heads to soak up any extra blood. Most amazing though, is that they have a muscle in the jugular vein that travels from the head to the heart to ensure the blood is pumped effectively round the body. So they won’t even get a head-rush when standing up! I wish I was a giraffe. I mean just look at it, it looks so cool, calm and collected! I can’t imagine a giraffe ever having to use a wheelchair…
Edit: if you google ‘PoTS and giraffes’ you will just come across loads of teapots shaped like giraffes which look a bit disturbing. So don’t do it in the middle of the night.