Phew, that wasn’t as bad as expected!! But has anyone seen my knuckle??

Today was D-Day, my first appointment with my new doctor.  I can’t say that I was looking forward to it.  My brain was in total overdrive and the two nightmares I had last night definitely didn’t help.  I had written my list, an essential piece of my doctors appointment equipment for without it I am a blithering idiot, a list that unfortunately had become rather long in the time since I last saw anyone because half of what needed doing hadn’t been.  I had my other piece of essential equipment my fidget toy, today’s preferred one was my fidget cube.  So with that in hand I went, I was shaking I have to admit and although my mum was with me (she calms me down) I really was dreading it.  I think part of it was just my usual doctor nerves, my sensory overload was in overdrive, but there I was in the waiting room.  I have to admit seeing the new doctor (a female when I’ve had a male for ever!!) in my previous GP’s room was rather surreal but it did make it slightly easier, and joy of joys she was nice.  I wasn’t expecting her to be horrible, I just didn’t know what to expect and for me that is always a no-no.  The unexpected and change for me are two of the things I find hardest and along with my sensory processing problems are why I suspect that I may have an un-diagnosed autistic spectrum disorder, but at 38 and with all my other problems I have to admit that it isn’t something that I’m particularly in need of exploring.  So anyway I shan’t bore you with the details of the appointment, but I shall simply say that 30 minutes later (as I had a triple appointment) 3 referrals to new specialists, 4 prescriptions, multiple blood tests requested and half a dozen problems we are putting a proverbial pin in I’d say it was a success.  I even have an appointment for next month.  I have slightly settled since, my heart rate has gone from a resting 135 to a more normal rate (my POTS always goes mad at the doctors as it’s too hot, I’m uncomfortably sat in my wheelchair and there’s too many people the list goes on) and I’ve had two much needed a drinks!! After that a rather nice curry, and an evening of dropping off while trying to catch up on emails I have now, I think, just about recovered!!!

I said that I wouldn’t bore you with all my symptoms but a new and rather strange one is that one of my knuckles has gone A.W.O.L.  My fingers have been bad for ages, I wear both wrist splints and finger splints on both hands (see pictures) but my knuckles are both dislocating and the disappearing one is a strange one.  It’s making everything, from operating my mobility scooter to writing and typing, really really difficult. Not really sure what’s going on apart from dislocating and swelling, but as the hand therapist I’ve been seeing has now finished we’ve got to find a new one!! That is one of my appointments, when and if we can find a new specialist!! 

So all in all it wasn’t as bad as expected. Even my visit to Currys PC World wasn’t too bad, quick and all sorted out for me. Thank you #curryspcworld. So until next time, thank you for reading!!!

My A.W.O.L. knuckle (you can just about see the bump of my ring splint where my knuckle should be!!)

My ring splints. I may post a review of these soon, please let me know what you think in the comments

An unusual request to put the crafty back into the CraftyInsomniac

Well today I’ve been getting back to being a bit more crafty, it’s always hard for me now to admit that I cannot do as much crafting as I would like to but with a lot of adaptation I can still do some things.  Cake baking and decorating is one of my loves, I love the creative nature of turning something that tastes good into something that looks good too.  I don’t get chance to do too many, which is probably a good thing because they are hard work.  I would not be able to do this any more at all if it weren’t for my mum she’s amazing and now not only lets me use her kitchen to explore this passion, but also gives me such a big hand that allows me to utilise my skills without completely crippling me.  Baking for me now means that mum gets everything that I need out, sets it all out in the kitchen for me within distance and even decants heavier products into smaller sizes so that I can handle them.  She gets the mixer out for me and  then once ingredients are mixed together she helps me lift the mix to put into tins and puts them into the oven, and then gets them out when ready.  When decorating again she gets everything out for me and helps me with whatever I need, lifting, moving and helping me constantly and making sure that when (like today) my POTS decides to rear it’s ugly head she makes sure that I take breaks and gets me drinks and helps me to recover before starting again, I seriously could not do my loves like this without her.

So onto this strange request.  The friend in question is not what you would call mainstream, it’s one of the quirky things I love about her.  Now her little girl, who she affectionately has nicknamed Doodles, is having her 6th birthday.  I cannot make it to the party, but as her cake decorating skills have become legendary (for their lack of skill as opposed to being crowning glory’s, hopefully no offense will be taken here) I asked if she wanted something made for her.  She was going to make the cake herself, which was fine but she asked me to make cupcakes.  Expecting some pink fluffy unicorn cakes I have to admit this one threw me!!  I will reveal later after some more info!!!  Wow, OK well all I can say is that although these are the most unusual request I’ve had, they certainly aren’t the hardest.  I’ve done everything from a family dog to a chocolate explosion, I’ll add some photo’s so you can see, so I’ve had some rather involved ones.  These cupcakes were nice and easy, chocolate cakes with chocolate icing.  I set to and my wonderful malfunctioning hands very soon had decided to seize up while weighing my eggs (the best way I’ve found to make good cakes every time) and one promptly ended up on the floor!!!  OK great thankfully I had spare, oh and before I started I realised that I’d asked for all ingredients except for icing sugar which is obviously needed for buttercream, hoping that the third thing would just be my malfunctioning body not any other major disaster I would get going!!.  Thankfully mum went to the Tesco express up the road for my icing sugar, and cleared up the egg for me which couldn’t be salvaged!!!  So stage number one was done, cakes baked, in the oven, mum cleaned up while I had my first break.

Cakes baked, stage 1 complete, you can’t really tell yet what they are going to be!!!


So onto stage number 2, fondant icing made into eyes and mouths. Still not giving it away. But I was getting very fatigued, thankfully mum was going to make a drink. I made the chocolate buttercream and left it to chill while I rested!! My POTS was also going mad so rest and feet up while I drank my drink was definitely needed. 

So final stage was putting together. Unfortunately I’d underestimated my buttercream so a bit of quick thinking was needed, mmm wonder if I can get away with it!! Yes I thought, these cakes were out of the box enough for me to get away with a little lateral thinking!! So the finished results are…….

Poo emoji cupcakes, yes you read that right!!! As I said not the most “normal” birthday cakes!!! My lateral thinking was to make “stepped on” poo emojis which, I think, I just about managed to get away with!!! 

So cupcakes are made ready for my friend to pick up tomorrow. I have to admit that they did take a lot out of me, my pain levels are high, my feet the size of mini football’s and my POTS is playing up.  I know that to most people this level of suffering would mean the end of this particular hobby, but I will not let my illnesses and disabilities stop me from doing things I love. I might have to adapt and limit things a bit but my crafty side cries out to be fed, if I couldn’t ever do these things I’d have no outlet for it and so I don’t mind putting up with the discomfort for the joy that the finished articles hopefully bring!!!

Other cakes I’ve done are……

These are just some of the ones I’ve done, they have been at various stages of my disability so haven’t all been as hard as others to complete. They’ve all been harder to do than for some people just for the simple fact that my bodies doesn’t usually play ball. But I just can’t face having to give it up completely so I am grateful to my mum, yet again, for all her hours of help and support which allow me to be able to continue hobbies like this.  I wonder what my next request will be one thing it won’t be, I shouldn’t think, is quite as out of the box as this!!!

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……..

I know you’re going to get bored of me but I wanted to share a purchase with you!!!

Ok ok I know too many posts, but I really want to make a go of this and need to be seen to do that!!!

My first purchase arrived today so I wanted to share it with you. Let’s talk shoes. Every girls dream right??? Not mine, I’m the first one to admit that I’ve never been your typical girl, I love my motor sport and football, and used to do karate etc. I’ve never had the compulsion to have hundreds if pairs of shoes and a fancy cupboard to house them in, but since having heavy ankle splints it’s been an absolute nightmare to find any shoes to fit and that look ok with them. I have lived in my skechers as they’re comfy and look good and stretch over the splints. However despite never particularly wanting loads of shoes I have found myself wanting to find some that look good and aren’t trainers but that don’t cost the earth!!! I have tried countless larger extra wide shop bought brands but to no avail. They just didn’t go over the bulky splints. Now being in a wheelchair you’d probably say why do I need my splints on but no.1 I can’t use my wheelchair in the house currently so I have to use my sticks or crutches to get in and round, which would mean that I would have to wear one pair of shoes to get out of the house then one in my chair only to change back again after. I could see the logic in doing this only getting shoes on and off is a rather laborious challenge that often requires 10 minutes rest after and needs my mum’s help and that brings me to no.2 reason. No.2 reason is that my ankles are one of the most unstable joints I have. They are so loose that they wobble when I walk and they swell to such epic proportions that the splints at least keep it at bay a little (although occasionally I have to take them off as the swelling gets so much that it cuts my circulation off).

Anyways so with no alternative other than to wear my splints the search was on to find some shoes. I found, after a lot of research, my only option was the specialist shoe places that sell shoes in sizes past an EEE fit. Yikes, expensive and old people’s shoes came to mind. Well I have to say this is the case for a lot of them, the phrase I often say to people is apt here “I’m disabled not old.” I think that some companies have forgotten that just because we are disabled doesn’t mean we don’t care about what we look like. I searched through pages of shoes that my 98 year old grandma would have loved and was balking at the cost I would have to pay for the “pleasure” of wearing them. Not likely. Until I came across now I’m not pretending that all the shoes on here weren’t exactly the same as the others but they had a few that I liked and looked like ones I could get before my splints. There were some that I couldn’t justify spending on but I then found a pair of canvas pumps, on sale and with V.A.T off for disabled in the widest sizes, and hurrah they went up to the epic size (6-8 extra wide) to accommodate my splints. I could have cried, I ordered them on the spot and was so happy I even didn’t mind the delivery charge (something which I have my own little rant about on many an occasion) because the discount off AND V.A.T relief meant I paid the price they were to start with (if that makes sense, I apologise because my brain is still completely addled with this heat)!!! Anyways they came yesterday and joy of joys fit, and even have room for my feet to swell without cutting off my circulation. They’re soft and feel so light I might have been wearing slippers. They’ve got elastic “laces” allowing for extra stretch and elastic side panels to fit better over my splints. I’m so pleased.

So what do you think, and please excuse the ultra white tree stumps I call legs!!???


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!!