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

My first ever disabled dream.

So the other night I had my first ever (or that I can remember) disabled dream.  I think that having been able bodied before and having not used a wheelchair for a lot of my life I have always dreamt that I was still able to walk about.  My dreams seemed to be an escape from my everyday life which is full of pain, dislocations and disability.  Instead of being confined to my wheelchair, in a dream I can run free and do the things that in my normal life seem a distant memory.  In my dreams I can do things that I never could or would do even when I was able bodied, because as Albus Dumbledore says (yes I am a HUGE Harry Potter Fan) “For in dreams we enter a world that is entirely our own”.  I don’t know whether it is a more conscious thing that I escape to my dreams to have the existence that here on earth seems impossible, or whether it is just that my subconscious has never got used to my disability but whatever it is I just seem to dream that I am still able bodied.  However the other night I had, as I said, my first dream where I was actually disabled.

Now it wasn’t your everyday dream, it was actually quite boring on the surface of it, no particular fantasies or fluffy pink unicorns just everyday life played out.  I was electric wheelchair shopping, so this part was still doing something that in my day to day life is beyond me as I still have yet to qualify and be helped with an electric chair (despite now very much needing one).  I was even shopping with a boyfriend, who because I don’t and haven’t had a long term one I never saw the face of.  However there we were looking thorough rows and rows of sparkling wheelchairs, all meeting my own personal needs (again rather a fantasy part as no shop would sell wheelchairs only suitable for one user).  I was being pushed and helped by my dream boyfriend who was kindly lifting me out of my current chair so I could try the different ones, this was again more a fantasy than reality as any “normal” sized chap would struggle to lift me at my current weight.  So anyway here we were happily trying out chair after chair after chair, even moving onto hoists afterwards (which thankfully apart from at the swimming pool I don’t currently need) so it wasn’t a sad dream.  It was after this that I woke up.  Now I don’t know whether it was the dream or that it was just a particularly bad day, it could even have been that I had moved more in my sleep but whatever it was I woke up feeling worse than I remember feeling in a long time.  Usually, even if I wake up with a dislocation, I wake up feeling even slightly better than I did when I went to sleep.  But I felt awful, like I’d normally feel at the end of a particularly bad day.  I ached, I felt really low and my body was reluctant to move.  I personally, if I thought about it, would have thought that waking up after a dream about running or doing able bodied things would have made me feel lower.  You know waking up to find that it wasn’t a dream that you were disabled, that you cannot walk without support and sticks and that you need a wheelchair.  But it didn’t, this simple dream about trying out wheelchairs and being in my wheelchair seemed to make me feel worse.  As I say I don’t know whether I would have felt this bad even if I had had my “normal” sorts of able bodied dream, but that one day I struggled to get through on so many levels.

So anyway I have been thinking about it since and have come to the following conclusion about it.  I do believe that it was the dream that made me feel particularly bad, not because I am in denial about my disability but rather because I need to escape the reality even if just briefly.  I need to run about and play and not have to think about wheelchairs and access and equipment, I need to dream about these things if just for a bit so that I can better cope with my everyday reality.  So I hope that in the future, even if I dream that I am in my wheelchair, that it still includes fluffy unicorns or some escape from normal everyday life!!

Why making fun of me, for falling asleep, hurts so much….

You might think it’s funny when I fall asleep at 5pm or throughout the day, you think it’s hilarious that I can’t stay awake through a t.v. programme or a film but let me explain why that happens. Let me explain why it hurts when you think it’s so funny that I am always tired.

No1. It’s not just being a little tired, my whole body aches with the effort of trying to stay awake. I’ve had days where exhaustion just overwhelms. It is fatigue and fatigue is very different to tiredness. It’s very hard to explain but tiredness can be rectified by a nap or a couple of good night’s sleep. Fatigue is relentless, your mind and body are tired; lifting your arm hurts with effort. You can barely string a coherent sentence together and thoughts stay fleetingly in your head before flying away never to be seen again. You cannot stay awake however hard you try because the effort of staying awake is in itself a huge effort, think about trying to swim in a pool of treacle with a full near costume on, could you do that?? Not easily!!!

No2. I have insomnia and painsomnia and that’s not fun. Insomnia speaks for itself, I tend to go to sleep ok but cannot stay asleep. 2am is my normal wake up time where, if I don’t get up I end up feeling worse. I therefore have made binge watching box sets of dvds in the early hours a new art.  Painsomnia is something that people without a long term condition often haven’t heard of. Instead of just being unable to sleep painsomnia instead is where you cannot sleep because of pain. Usually I wake up because I’ve dislocated or sublaxed a joint. Waking up with a hip or knee on a glorious midnight walkabout is not really my idea of fun, if it’s not those it’s my shoulder making my arm do a great impression of no longer belonging to me!! It’s not exactly conducive to a good night’s sleep. The midnight dislocations are inevitably followed by the lenghthly relocation process, wriggling about until the glorious pop moment when you know it’s back where it should be.  I know then that I need some painkillers and a recovery period so again am to be found on the couch binge watching box sets. Now much as getting to watch my great dvds is good, the timing could definitely be better. I’d much rather be watching tv at a normal time and sleeping 7 or more hours a night, but my body has other ideas and so at an average if a 2am wake up time is it really any wonder I drop off at 5pm?? To me I’ve often been awake 15 hours!!!

No3. What takes you 10 minutes has taken me 40 and used every last bit of strength that I had left. Now a lot of people use the spoon theory to describe our energy stores. The theory goes that you start the day with x amount of spoons, during the day everything takes some of those spoons until you have no more left. Most people have the chance to replenish their stores during the day with either food or less taxing tasks. To me however there are no less taxing tasks, each one is hard. Some, yes, do take different amounts of my energy but they all take energy and so before the 3nd of the day I’ve already run out of “spoons”.

No4. You think I’ve been sat doing nothing all day, when in fact that “nothing” has taken so much effort I’m exhausted. Just sitting takes a lot of energy especially on a bad day. EDS makes any movement difficult, the threat of dislocation looms at all times. It is an effort even using brain power especially with brain fog when you cannot really even think what your own name is. You have to think about how to get up off the sofa, you have to think how to do everything to minimise either having symptoms or to make sure you don’t have an accident e.g. a fall or trip over etc. Having POTS and my other conditions means that maintaining an upright position even seated takes effort. My pulse races and so I constantly feel ill from that, it’s exhausting. Added to that you have a mountain of appointments, every few weeks you have to military plan how to get to said appointments, who can take and assist you and then you have to plan what you are going to say. We find that so many people in the medical profession haven’t heard of EDS or if they have a many more have lots of wrong ideas about how it can affect you, this means that you have to go prepared and read up on things too!! It can be a full time job. I also complete surveys, it keeps me busy and gets me vouchers to spend on things I couldn’t necessarily afford. These take a lot of brain power and again effort just to sit up doing them.

No5. It means that you don’t understand what I go through and why I’m so tired. Your teasing, whilst not meant to be mean, shows me that you don’t understand all these problems. You don’t understand how much just living day to day is. How hard I find it to do anything, how even sitting takes a lot of effort for me. You don’t see that I don’t like that I can’t stay awake, that I’d much rather be watching programmes I like and doing crafts. You don’t understand that however much or little sleep I get I’m still fatigued all the time and that you just don’t see that I don’t choose to fall asleep. It is simply that my body has given up, has no more energy left and has no choice but to shut itself down. 

So yes I do fall asleep a lot in the evenings, yes I can’t stay awake and am constantly tied. But I believe I actually have good reason why that is. I’m not after pity from anyone, but some more understanding would be appreciated.

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:

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!!

A bad day.

When I started my blog I hoped to share fun things and help explain some of my symptoms and review places I go and equipment I have to hopefully offer some insights into illness and disability. However today was a really bad day for me. I’ve been struggling for a while but today made me worse. As this is part of long term conditions and disability I thought I’d still share. For some what’s happened will seem trivial but for me it’s the end of a downward spiral that has left me in a depression that I will have to struggle to come out of. No pithy anecdotes or quips today I’m afraid just reality.

I’ve been having a consumer issue surrounding my old mobility scooter and it is really hard for me to deal with especially with my anxiety. This scooter was nothing but problems from the minute I got it. Far from the freedom it was supposed to be it was a nightmare, breaking down every couple of months the last time in the middle of a road. Thankfully for me a side road, however the amount of main roads I cross I was very lucky. I should perhaps explain that this scooter was paid for with the only inheritance I got from my grandmother and it had been a long journey trying to afford one. I can’t afford and couldn’t afford the electric wheelchair I very much need so this was to be a much needed help. My mum who is my main carer has a heart condition and severe arthritis in her hands and so was struggling to push me in town. The scooter was supposed to stop the need for mum to push me. Anyways I can’t go too much into the details as it’s on-going but today I got yet another letter from the shop delaying refunding my money (we’ve been told we are entitled to this). This has just finished off the spiral as I was hoping it was finished with. 

I have got more investigations to try and work out why my symptoms have flared up and they seem never ending. Throwing up more questions than answers I’m tired, tired of fighting, tired of questions, tired of everything. As I said I know lots of you with other problems will think this is a small drop in the ocean but without an essay explaining all the other things that are going on it is hard to get over to you how this has just pushed me over the edge but it has.

However, much as I want to give up and stop the fights……. I must go on. The depression has taken hold and I have to fight to try and pull myself out of it. But I will at least try. So there it is, I know it’s a long post about being depressed and know some of you will probably have stopped reading, but I think that this is real, this is part of my conditions, part of my disability and I feel that rather than hide it away I would take the plunge and share. Hope that others who are in the same condition might read it and find some hope in knowing that they are not alone.