Plant delivery on a mobility scooter!!!

I’ve been thinking long and hard about what to write. I have realised that much as I want to keep up with my blog on the whole my life just isn’t that interesting!!! However yesterday after looking back my trip to the garden centre was actually quite amusing, although it may not be so much to read!!!  Mum and I decided to go out for a bit just to get some fresh air so we went up to the garden centre which is actually just a 20 min ish trip up the road with me on my scooter and mum walking. It isn’t the easiest trip, the pavements are broken up and the drop kerbs aren’t great either but it gets us out of the house!!! Now it could be the trip up that stood out as funny to me as I’m driving my scooter whilst dizzy (as my POTS is playing up in the heat) and trying not to pass out I should imagine that would probably look rather amusing to an outsider.  Also I have to say the gentleman who let us cross in front of him must’ve had a giggle when I raised my hand to thank him and almost ran into my mum. But nope none of those were the particularly funny event that stood out to me. 

What did stand out was out trip back. Mum saw a couple of plants that she liked and as we’ve taken ones home before we thought no problems. They’re not heavy so my scooter can carry them easily. We put one in the front in my basket and one on my footplate. Now had they been smaller plants it wouldn’t have looked so funny but there was a nice long stemmed something or other in the front, mum carrying another long stemmed plant, and a smaller one with long shoots balanced between my feet (you can tell I’m a really good gardener can’t you…..not!!) It must’ve looked rather funny riding down the road with 2 plants balanced on my scooter.  Soil was even coming out of the one in the basket thankfully we had a tissue to put under it or I think I would have arrived home with a handbag full of soil and a plant with none in!!!! Apart from the fact that I hate photos I wish I’d taken one of me because I can only imagine what it looked like.

What I will say is that if I ever had dillusions that my mobility scooter could be used as a delivery vehicle I was very sadly mistaken, a mobility scooter does not transport plants (or much else really) well!!! 

Blood pooling, and pregnancy looking swellings .

On the whole I avoid contact with mirrors and cameras, they are evil things that show up the slightest of floors. I even only look at the bit I’m doing in a mirror on those rare occasions I wear make-up, I’ve perfected the just looking at an eye or my lips and not seeing my whole face. But mum and dad have been decorating their bedroom and had problems with the mirror panel so it got put in the room that my carer helps me do my hair in. I actually didn’t realise this until this morning, as I said I’ve perfected not looking at or for mirrors, when I happen to glance to the side while my carer was drying my hair. Now I could say I was horrified to glance my chunky legs because they’re so big, but for once it wasn’t this that struck me. To my horror my legs were a mass of mottled patchy blue, purple, red and white. This was even worse on standing. I know that I have POTS and I know that this causes blood pooling, but not being someone who likes my legs I’m loathed to get them out even on the hottest of days. Usually I am to be found with cut off trousers which show barely an inch of skin before my splints, so when wearing my towel and dressing gown this morning meant that for once most of my lower leg was on show. I could, for the first time, see in all their technicoloured glory my badly bloodpooled legs!! I don’t really know quite what I expected, whether it was blissful ignorance that I didn’t think my legs did this or whether I was just stupidly forgetting this symptom but whatever it was it did shock me!!! I couldn’t take a photo of this (my phone being doenstairs) but there they were, they even did it again when mum was helping me get ready for bed so she saw this phenomenon too.  It is yet another sign that my POTS will not be igmored any more!! 

On of my other strange symptoms at the moment is my gloriously swollen stomach. Now I know I’m no size 2, far far from it, but this is quite obvious swelling. My stomach can go from usual to looking heavily pregnant within minutes. I have very bad IBS symptoms and know that I should really do a low histamine diet but I can’t face it!! Now some of the benefits of this are obvious, before I was pretty much full time in the wheelchair I used to get offered seats and people used to be nicer to me as I was “pregnant” it’s not so much of a benefit now because I’m more obviously disabled though. I’ll put a piccie so you can hopefully see what I mean about the swelling!!! But unfortunately it seems that this is just one of my bodies tricks because however much I’ve tried I always seem to swell. You never know I might end up getting a solution but until then I will randomly end up looking like this……..

A mass of contradictions!!!

So it struck me again this afternoon what a mass of contradictions I really am!! I was sat doing a jigsaw puzzle (another one of the things that eds has curtailed, but more about that later!!) watching first the end of Le Mans 24 hour race and following that one of the top gear specials!!! Now I’m not saying that I’m completely unique in having eclectic and diverse tastes but I do, in pretty much all areas of my life, have very differing tastes. I love motor sport, cars, football, tennis and at times (6 nations mainly) rugby.  I also like gymnastics and dancing  (totally love strictly). I was even training for my black belt in karate before I became disabled. But I also like many arts and craft related things like knitting, crochet, cross stitch, jewellery making, sewing, colouring, cake decorating, baking and any other crafts I can try my hand at. My music tastes are somewhat different too everything from Nickleback, Linkin Park and Queen to Take That, the Backstreet Boys and various other pop music and others in between!! I even at the right times like classical  (especially Tenors like Alfie Boe and Russel Watson) and I love musicals. My diverse tastes don’t stop there and my films are as different as Disney to action and Rom com’s to some sci-fi like Star Trek and of course again musicals. So I enjoy a wide range of hobbies and watching and listening. However diverse my tastes are though my EDS and other conditions don’t discriminate.
Sitting finishing the last 20-25 pieces of my puzzle off my POTS was going mental, I was ready to fall asleep with fatigue from my symptoms being so bad all day and my carpal tunnel and tendinitis were causing problems picking up the small pieces. It is frustrating when you used to be able to work at these tasks for hours on end and yet now sitting at the table for 10 minutes left me sweating with the effort (and soaring temperatures) and my kneecaps going for a walk around my legs. Break no.1 for a drink and relocating said kneecaps and I try again.  This time brain fog had set in too and so I spent the first couple of moments staring at the puzzle trying to work out exactly what I was supposed to be doing with these little pieces, once my mushy brain stopped doing a good job of being completely absent I carried on having another break after another 10 or so minutes. 30-40 minutes working interspersed with 5-10 minute breaks  (each time) and my puzzle was finally finished. Rather than putting it away and starting my next one my EDS, POTS, fatigue and other symptoms were so overwhelming that the rest of the day (as had been most of the day before I started my puzzle) saw me lead out on the couch trying not to move instead of carrying on to start another jigsaw!! But this, far from being a once off because of the heat, is instead a regular occurrence. Whatever my activity, whatever I’m doing has to be carefully paced. I have to have a couple of things on the go, a craft, computer time, TV and music are carefully alternated giving me the energy to get through a day. A task that would take most people 30 minutes can in fact take me all day once breaks, easier tasks and eating and drinking have been carefully choreographed to allow me to still do the things I love. Now I’m the first to admit that my “pacing” is absolutely rubbish, I do things when I should be resting and can get quite stubborn when trying to carry on. I have an amazing “pacing kit” from Stickman Communications (I will put the web link below, but if I forget please ask!!) but because I don’t have anywhere to put it up it is sat waiting for either me to move out or things easing to allow me more space here to use.

 So for now I will continue to try to pace where and when I can, and I will still (I’m sure) fail at times and do too much. However despite my EDS and all my other conditions I will continue to do as many as diverse and eclectic mix of hobbies as I can, you could say that my diverse tastes are actually useful because at least when I find one hobby sitting up too much I can instead pick up one of my other ones for a break!!! Who’d have thought that my strange mix of hobbies would in fact end up being helpful when pacing!!! 

What do you think of my puzzle (a limited edition wasgij)???

As I knew I would I forgot to put the link on. Love loads of stuff from here but for the pacing pack just search for pacing on:

Fathers day.

As always happens with my blog posts I started thinking about one post and ended up writing something totally different!! Anyone who knows me knows that I have a rather strange relationship with my dad. He is a real grumpy old man and moans constantly about me and my things (equipment for my disability and crafting and even basics) and moans about helping me too. However much as he’s a pain in the backside our relationship is probably the closest it’s been. In the past we had all out rows and an incident that will forever live as one of my worst ever, but now despite the moans and the annoyance I can actually say I do love my dad. It’s not that I didn’t love him in the past but the bad in our relationship often outweighed the good and our arguments often left me totally heartbroken or more angry than even I would admit to. I think that now though I’ve accepted that my dad and my relationship with him will never be “normal”. I’m not daddies little girl, that accolade is firmly my sister’s. I think however that this acceptance has made me put less pressure on our relationship and I do love him. All the silly, moany, annoying, kind, strange, funny and OCD sides of him.

I long ago learnt that my dad is not the all knowing, when he criticises or upsets me (there are still times) I can now put my sensible head on and think if he’s right or not. It’s not like he’s not done anything for me. He has taken me to more medical appointments than I can count and has stood up for me and by me when others haven’t. He’s been one of the only ones (with my mum and a few others I won’t mention) who never doubted my EDS diagnosis and has been a taxi service for me both before and after my car. Yes he does still upset me, for example the consumer issue I mentioned in another post is really upsetting me and mum is having to twist his arm all the time to help me. I know from the outside it seems strange to people that I can say that I love him but I do, I just have to take him how he is and he has to accept that at 38 I might not always agree with him!!

I know this might not be the most normal of fathers day tributes, but then I don’t have the most normal relationship with my dad!!!

Feeling hot!!!

I couldn’t decide the topic for my post today, yesterday I’d gone through the internal battle I have when I buy anything so thought I’d share that but when I came to start to write an overwhelming force took hold and so today I’m going to write about that instead. I shall save my purchases until they come to share. 

So what was this overwhelming force?? P.O.T.S is what. Postural Orthostatic Tachycardia. This hot streak has set off a chain of events that turn doing any small task into a marathon, and a task that others don’t think about like opening the front door into a lottery of whether I can get there and back without passing out. Now don’t get me wrong I love the summer, I prefer sunny days to rainy ones and the lovely blue sky is far nicer than a grey one. However this hot snap has made my P.O.T.S really flare and so I now constantly feel like I’m on a ship and the travel/sea sickness that goes along with that feeling is anything but fun. My brain, which normally isn’t exactly mensa standard, is complete mush and forming a coherent sentence is nearly impossible. For anyone who doesn’t know P.O.T.S causes your pulse rate to soar way above normal and can increase by over 30 beats per minute from laying to standing. This can cause near fainting or fainting and a list of other symptoms that mean that instead of being outside enjoying the weather like “normal” people I am instead lead out on the couch trying my hardest to keep cool and debating whether it is really bad to add salt to a cheese and coleslaw sandwich  (as you’re supposed to up your salt intake to help)!!! 

I can’t say that I’m managing very well with trying to keep my symptoms at bay. I am trying to work out if it’s essential or frivolous to buy an extra fan for downstairs and if I can actually justify the money anyway. All this while trying to cope with a brain that doesn’t want to switch on, and a craving for ice-cream that won’t be sated with what we have in the house!!! So I have as much as I can to hand so I don’t have to move, I am drinking so much I must slosh and my brain will just have to remain a fog until the heat passes!!

You wait a whole year for a blog post and two come along at once!!

When I wrote earlier I didn’t expect to be writing again so soon………but here I am!!! I forgot when I posted that although I’m geeky in many ways  (liking Star Trek and sci-fi ) I forgot that ─Ćoesnt extend to technology.  My total ineptitude when it comes to technology lead to me merrily sharing away hoping to get someone to read my musings but having not published it properly and despite adding a link to the post no one could see it. A lot of head scratching and downloading the WordPress app and I found my long post happily sitting there waiting to be published!!! Doh!!! 

Anyways so I decided to then decopatch the box that I’ve had sat waiting for months to do. I got all the things out and started, forgetting that as it’s a hot day sitting upright leads to POTS symptoms. Also doing anything like this takes a lot out of me and my hands and my shoulders allowed me to do the lid and no more. I’m now lead out on the sofa waiting for my symptoms to subside……… of the many many downsides of EDS, POTS, fatigue, Carpal tunnel syndrome and long term conditions like them!!! 

Hopefully I’ll actually publish this post correctly!!!