Wow a fairly successful family outing!!

Yesterday, wanting to make the most of the nice weather, we decided to go out again as a family.  This time we had settled on somewhere we have been a number of times before, Pulborough Brooks which is an RSPB run place, this is usually a good bet because we know what I can and can’t manage. It’s not too far from us which is a bonus for a couple of reasons, firstly because travel for me is rather painful and secondly since my niece has become taller and Skoda made the back seats of their cars smaller we all struggle to fit in the car (I cannot afford a mobility car and we cannot get a larger family car either). Another huge bonus with Pulborough Brooks is that they have an off-road scooter to hire, which means that I can mainly join in and I can get around without worrying that I can’t manage the terrain. We phoned up on the day so I was a bit worried that this wouldn’t be available as usually we give 24-48 hours notice, but shock of all shocks (for us anyway) was that it was available and we could borrow it!! So we all went off crammed into the car, well those in the back seat are which I always feel guilty about because I can’t cope in the back (and at my size unfortunately it would be even more cramped). We had lunch first which came with a wonderful view and lots of little sparrows…..

The scooter was so good to have and although there weren’t many birds about we had a good time. The only downside for me was I needed my emergency kit (will be posting about this really soon as it’s becoming an essential piece of kit for me). I needed it before we got back but faced with a compost loo or a wait until we were back at the start was for me no contest, I waited  (using a compost loo once in my life on a school trip to the centre for alternative technology was once too many, I like my comfort I just don’t do anything like that!!) mum managed in the toilet like a trooper to help me change etc. It’s an unfortunate but increasingly common need for me. We then managed a sneaky ice cream before going home (shhhh if you don’t tell anyone it won’t have had any calories in it)

So for once a family trip didn’t end with arguments or disappointment. We enjoyed the day and I participated as much as I could (the hides really aren’t negotiable by me in an extra large scooter so someone waited with me outside while my niece went in to see what she could spot) RSPB Pulborough Brooks was a good trip out for us. 

Some photos of the day……

Have you got any go to places that you enjoy as a family??

Blood test deja vous!!

Yet again two days ago saw me off to the hospital with mum for yet more blood tests!! We have researched and found out the quieter times because of my sensory problems and problems with crowds so late morning saw mum and me at the local hospital for my blood tests. Seems however that most of Horsham had had the same idea and we arrived and took our number  (Yes like a meat counter or other place you take a number and sit and wait to be called) I took number 76, but when we arrived they had just called 39. No seats in the waiting room or entrance to the room and my fear of crowds saw us waiting down the corridor on my scooter so mum was left standing. As discussed before our local surgery has stopped doing blood tests so this is our only option so we had to wait, because you cannot guarantee that if you come back at another time you’ll have any more luck. I’d forgotten my fiddle toy, as I’m preparing a going out kit bag and I’d been thinking of putting it in that. Because of that I’d forgotten to put one in my main bag. That was unfortunate because the sea of people and the lights and wait, plus the fact that the corridor has the toilets in it meant that I desperately needed something to calm me down!! Our wait of over an hour was rather difficult for me, this was our view……

Now I was glad that I was in the corridor but not sure how I would have got past the lady in the wheelchair even if I had wanted to be in there!!! So after over an hour we were finally called, by this time there was only 2 phlebotomists on duty and my stretchy crappy veins decided not to play ball!! Thankfully not as bad as my worst attempts, but I needed both phlebotomists, 20 minutes, 2 rooms, 3 changes of needles and thank goodness only 2 sticks and a vein massage to get 3 phials of blood!!! They better not need any more soon because I don’t think either mum or I could cope, and I can imagine the phlebotomists drawing straws to see who was unlucky enough to get me!!!

Arm 1

Arm 2…

But let’s see what these ones show shall we!! At the moment it really could be anything!!

It took a while to get over these my POTS and fatigue have been high since. I also have a nice bruise to remember the day!!  

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!!

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???

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???