new wheels

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!!

i wish i was a giraffe

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.