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!!

Migraines and Mishaps

I’ve suffered with migraines since I was approximately 4 years old,  but you try telling the schools nurse (we had school nurses when I was at school) that you have a migraine and that you can’t do anything about them when you’re that age.  I heard that I was making them up, or it was just a headache as 4 year old’s cannot suffer with a migraine but it was a mistake that teachers and nurses alike only made once.  When I was young my migraines hit with no warning and the after effects lasted for days.  The only telltale sign that I had a migraine was uncontrollable yawning, a symptom that I carry to this day.  So I would promptly, if I started with the headache, tell the teacher “go and lie in the snuggly corner” was their usual response but falling asleep with a migraine I would really fall asleep.  Comatose was probably more like it, my earliest school memories are being woken up by my mum picking me up after such incidents with a worried teacher looking on and explaining that they’d never seen anyone fall asleep so heavily!!  The other mistake they often made was if they told me that I should take a tablet, it has only been in the last 20 years that I’ve been able to take any at all and even now I still struggle with them.  Projectile gagging and, or various incidents of them trying to get me to take paracetamol tablets really didn’t work.  I think however the worst of my migraine stories happened when I was first at secondary school.  Still having to fight to get people to believe that my migraines were real I went to the nurse to say I needed to go home as I had one.  The usual first response was suggested, that I lie down for a bit before I could go back to class, however my other rather unfortunate symptom of migraines was my rather impressive vomiting skills.  I have never been the neatest of pukers, one rather impressive feat when I was young was managing to throw up right down the stairs from the top to the bottom and unfortunately there are many many other stories of other rather unfortunate incidents.  However on this occasion the school nurse, having not believed that I needed to go home, had left me on my own in the medical room.  I managed to make it to the toilet, which was one good thing, however my aim wasn’t that good.  The nurse returned to me having managed to vomit over the entire wall, toilet and floor in the room.  Funnily enough after that if I said I needed to go home, I was sent home!!

So to my migraines now.  I have two distinct forms of migraines now, one being the same full blown migraine and the other being a manageable migraine which I call a migrainey headache.  It’s the same symptoms but I can usually take tablets in time to stave off having to go to bed for the day.  I can just about cope with migrainy headaches usually having them on and off for a day, but staying just bad enough to be felt.  I still yawn way more than you would normally expect and you can see in my eyes that I have a migraine but I can just about function as normal.  However I have a rather unfortunate side effect of a migrainy headache (because a normal migraine I have to stay in bed for I don’t actually know if I have this symptom with a full blown migraine too) of being even more comically clumsy than normal and very dopey too.  Now today I’ve had one of my migrainy headaches, it’s been there most of today.  This morning while getting ready for town, mum was trying to help me into my cardigan and at the time I also had my crutches instead of my walking sticks.  Mum offered me one arm, I managed to sort out which arm however trying to get it in was rather fun, tangles and turning the wrong way, bag straps over sticks and you have to have a bit of a giggle.  Driving my scooter into town was rather comical, although I think that the sudden urge I had whilst waiting for the crossing to change of pressing my power and surge forward into the traffic was rather more worrying however I did manage to quell that one!!  

I couldn’t work out today if my trigger was the air pressure and humidity or if it was simply my POTS playing up, it might have been both. I rarely know what has triggered one, cigarette smoke is definitely a trigger but that and stress are the only triggers we’ve identified. I have fairly regular migraines and migrainy headaches I have thankfully just got my migraine medication back after a few years without it being manufactured. I’m so glad it’s come back though as it’s the only thing I’m allowed to take and the only thing that works too! I don’t know why I’m so clumsy and ditsy when I have a migraine though but I do think perhaps that might be yet another reason why I don’t actually go out on my own, it’s probably a good thing I don’t really; can you imagine the stories if I did???

Naps are important!!

I have again had real problems with trying to think about what to write.  I have been aware that while I really wanted to connect to people about my disability and issues that I and other disabled people have, I also wanted to review products and share useful things that I have and use to help others and I haven’t had the chance to do much of that.  I haven’t been buying a lot at the moment for various reasons, and have struggled to know whether to review products that I’ve had for a while.  I hope that I can get more reviews in, and I will write more about the different parts of EDS and how they affect people but I think that it will take time and I’d rather write, at least for now, on day to day things.  I have been very lucky and my blog post on falling asleep throughout the day has been published on “The Mighty” and even was quoted in the last newsletter email from EDS UK.  I’m hoping to send more posts and articles into them so hopefully you will see me on there more and more people will find my blog though there.  So for the time being I am again posting on the insomniac side of the CraftyInsomniac!!!

It was very stormy here last night, something that my body and mind do not like.  My symptoms are much worse again because of the storms and I have a severe phobia of them.  So this morning (12.50am to be exact) saw me downstairs on the couch after having migraine meds, pain meds, and a drink listening to my music shaking like a leaf while the sky was continually lit up for hours with almost constant very (to me) scary lightening and the occasional rumble of thunder.  To those who enjoy storms it was, I’m sure, a spectacle.  To me, however, I spent the night on the couch enjoying first my music and then once the lightening had died down my Quantum Leap box set!!  I think I must have had a maximum of 3-4 hours all night.   So I had a really bad night’s sleep last night and it led to today me needing to have a nap to keep going.    But while that was exactly what I needed my body and the universe seemed to be conspiring to let me do anything but take that nap.  I first tried this morning, thinking that as I’d been up all night (pretty much) it would be better to have a sleep and then I could get on with doing my emails and concentrate a bit more on them.  So I had a drink and then settled down on the couch hoping to have an hour’s nap.  Now nothing was particularly going round in my head, it wasn’t particularly noisy  and my pain killers were working as well as they ever do but could I settle, of course not.  I tried but just could not fall asleep, I gave up but of course within an hour what was I doing?  Falling asleep while using my laptop and having a drink, in fact now I wasn’t trying to I could have quite easily fallen asleep.   I would have been very uncomfortable and woken up in a lot of pain but I could have, and was, dropping off easily.  It was lunchtime though so after I’d eaten I settled down again, within 10 minutes the phone rang.  Then again and again, 3 times, you seriously have to be kidding me I thought.

I did manage after this to drop off for a bit thankfully topping up my energy although I know, very probably, that I will still be struggling to stay awake tonight whilst watching TV.  However I just want to add a little side bar here that napping isn’t, for me and others with long term conditions, laze.  No it’s necessary, some days it’s needed more than others and some days it’s just topping up energy while others it is catching up on sleep.  So please when you see someone having a quick 5 minutes nap, don’t jump to the conclusion that they are lazy.  It might just be, like it was for me today, a very much needed sleep.  That is if you can actually fall asleep!!

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!!!

Appointments, pacing and “The Unmentionable problem!!!”

This week I have had two hospital appointments, both at our local hospital which has meant that I have been able to get to them in my mobility scooter.  It’s meant though that for the rest of the week I’ve not really done anything, I’ve not been able to go out in between because for me that is the extent of my energy supplies.  The rest of the week has seen me on the sofa hoping to conserve enough energy to make it through the appointments.  Pacing for me doesn’t always work, I am not very good at working out what I can and can’t do and I get frustrated at my lack of energy after doing something which just shouldn’t take as much energy as it does.  Now I will admit that appointments though do take an awful lot of my energy, I have learned through trial and error that 2 is my absolute limit unless in exceptional circumstances.  It’s partly because just getting anywhere, even on my mobility scooter, uses energy but it’s also partly because appointments especially hospital appointments set off almost every one of my sensory issues. They are noisy, they smell horrible, the lights flicker and are bright, there are too many people, there are just too many things to cope with all at once.  My sensory side just wants to go and rock in a quiet corner outside and leave my rational side to go in and deal with the appointment anxiety.  You see for me hospitals and doctors have also become a place for me to fear, a place where I have heard “it’s all in your head” more times than I care to remember and so an appointment especially with a new person or department are panic inducing, will the person listen, will they have heard of EDS, will they know what POTS is, will they know enough about these things to not call me a liar?  It’s also often a place where instead of the answers I seek, I get more questions.  So two appointments this week has been my limit, and despite not doing much else to cope with these this afternoon has still seen me yawning so much that I think my mum has thought that I’ve been trying to swallow her!!! As I have been worried about my appointments I haven’t been thinking of my blog so much.  I will also be having a rest day tomorrow as my POTS during my appointments was going mental, I had a pulse rate of over 140 at one point, some of it was with the panic that the appointments set off but a lot of it was definitely my POTS.

My appointments were fairly well spread out, I had the podiatrist on Monday and then today was the unmentionable appointment!!  It’s not an easy topic to cover, for me it’s mightily embarrassing but for the first time I will bring it up, today’s appointment was at the incontinence nurse.  I have had numerous interventions to try and help with this, but nothing has worked (I might come back to those at another time if you will indulge me here) so today was solely about sorting me out with pads.  The array of the most embarrassing, sole destroying pads was brought out to show me after I was given another label to add to my ever expanding list I am now considered to be “functionally incontinent”.  To be honest at this point I was taking very little in so apart from the fact that there is now nothing that can really be done to improve this situation, it is down to my disability, I didn’t really understand that term.  I was more concerned that having to currently change my pads up to 11 times a day, the 4 pads that can be provided by the service isn’t going to be enough and the fact that at 38 I don’t want this to be my life from now on.  I also was not very happy with the pads and the fact that they were huge.  But there we are, for now at least I will have 4 pads a day provided for me on a 3 monthly basis.  The rest I will have to pay for.  We shall see what the future will bring but for me the unmentionable problem is, if you will allow an extremely cringe worthy pun, a complete pain in the backside!!

Wet days and mobility scooters!! 

When you have a disability you know that things are often not that easy. Almost everything had to be adapted to fit.  One thing I never even considered would be an issue though is rain covers, I mean they have rain covers for prams so why not wheelchairs right (OK so I don’t particularly want a child’s style rain cover but you know what I mean)……wrong!!  Yes if you’re rich you can buy a complete cover for a scooter, picture a greenhouse on a mobility scooter and you’re almost close. But not only would it be boiling hot (not that I can afford one to try) but also its not exactly funky is it?? A mobility scooter isn’t the height of fashion but add what looks like a greenhouse on it and I might as well register for my pension!! The next alternative is a cape, they’re either one that goes over the entire scooter, so you look like a tent with a head on wheels, or just go over you but are longer in the front to go over your knees. Now these are ok in winter as they’re thick and reinforced but in this weather they’re nothing but a sauna. You wouldn’t think that “normal” wet weather gear would be a problem but with those as you are seated the issues are worse. You can go for a Mac where the water runs straight down and you end up with a puddle on your lap, the same for any similar coats. Your legs get wet anyway because you are sat so there is no alternative, unless of course you want to go the full hog and wear waterproof trousers too!!! Again though these are hot and not very fetching!! Umbrellas are pretty much a no no unless you can hold up an umbrella and steer and keep going in some semblance of a straight line, oh and if you’re like me and have issues with your hands holding that up with even a whisp of a breeze is impossible. Don’t even get me started about hoods, as soon as you move with a hood on you blow up like a hot air balloon and it falls down (unless you can plaster it to your face, another great look). 

So basically you’re screwed. You either get a soaking wet lap and head; or you can spend a fortune to get boiling hot looking like a greenhouse on wheels or a tent on wheels!!! Can you guess which I went for?? Yep a soaking lap and a change of clothes when I returned!! Come on mobility suppliers, I cannot be the only younger disabled person who wants to keep dry and look good when I’m out can I??? 

Why my not accepting the label “disabled” doesn’t mean I’m on a crusade. 

Now while I know that I am in fact disabled and live everyday with my disabilities I still don’t necessarily consider myself to be “disabled”. I’m not deluding myself I know I am not able bodied, but having been a fairly “normal” abled bodied person until I was in my late 20’s I still struggle with the label “disabled”. Ok so perhaps normal is exaggerating things to some extent, I have had differing and strange wide ranging health concerns pretty much all of my life, even my childhood disease experience baffled our then GP who said that no one could get chickenpox and mumps together, that is until he saw me and then decided that yes it seems you can. I even had chickenpox and measles twice each which again I was told was extremely rare. So apart from these problems with baffling GP’s for years I grew up running around and doing sport until a condition just before my teens where the then current treatment was considered to be do no sport at all, no exercise and exertion. A few years later when I started doing swimming and a few more exercises again my weight had started going up and I did struggle but I did do various things that I now look back on and wonder if it was in fact me. I even went back to Karate in my 20’s, was training for my black belt and was coaching classes. You see it wasn’t until I hurt my back in my late 20’s that I had to take on the disabled label. In one moment I went from helping at a playscheme, playing games with the children and staff to being in hospital to a spiral down to my wheelchair. I have even gone from being able to self propel a wheelchair to now needing (but not qualifying or being able to afford) a powerchair. I have had to put up with doctors telling me that I was making things up, that I was choosing to not do things and that despite having and doing various rounds of physio I wasn’t trying hard enough. Why anyone would chose a life of struggles and hospital appointment and tests etc and would chose not to be able to do the job they worked really hard against the odds to get a qualification in is beyond me but I still have heard this time after time. But I think that my problems with being considered disabled is more with other people’s perceptions of what they consider that to be rather than the actual disability itself. 

It is slowly changing but people still think of disabled people as people with both severe physical and mental impairments. The comment that I don’t “look disabled” still rings around despite me now being almost full time in a wheelchair.  I thought that people talking to the person pushing you in your chair rather than you had died out, until I had a disability myself. My mum has even started hanging back at checkouts to force people to see me as a real life speaking, thinking, talking person rather than just seeing the wheelchair. It’s not everyone that thinks like this and some shops are definitely better than others, but it’s still there and a lot more than I thought. It’s obviously not just shops either, I’ve gone past people in my scooter or wheelchair and overheard “It’s nice that they let people like that out for the day now” or “Oh bless look at that disabled person, it must be so hard” and had to look around before realising that they must be talking about me. It’s just not how I see myself or the first thing that I want to be known for, a lot of people just still see disabled first and person second. The “disabled” label almost hangs around your neck and I just don’t wear it well. When I am actually asleep, and I know it isn’t that often, and dream I am walking and running about I am not in my wheelchair or using walking sticks. I still see myself how I was before my conditions became so bad that I needed to use wheelchairs etc, I wake up and the reality of my pain and splints and walking sticks are still there. They’ve not disappeared overnight, obviously, but there again they’re not all I ever think about. I have the same likes and dislikes that I did before my disability, I’ve just had to alter how I do some of them.
So I think what I’m trying to say is that while I know that I will always have to complete forms and tick the “disabled” box, in my head I consider myself a person first and then a person with a disability rather than just “disabled”. I don’t want to start a crusade, I don’t disapprove of the term “disabled” and wouldn’t admonish someone who referred to me as “disabled”; but I guess I will always feel that I am not just “disabled” I am a whole lot more too.