A shout-out to

This post is to say thank you to Catherine from comeone-letsroll who gave me this award:



She also listed me as one of her favourite blogs at the moment, which is really sweet as I am still relatively new to this whole blogging shenanigans. You should check out her blog too, as not only is it pretty looking, but very funny too. She also seems to like cooking and all things nom nommy, so thumbs up to that too!

Shopping - one for the guys

After the last post and its unpleasantries, onto less loo-orientated matters.

This post if mostly for the guys, or specifically for those who live in a small town like mine and so therefore stores may not have upgraded to be fully accessible.

Today I went shopping for my Dad's birthday present, and I think I can safely say it was even more stressful than shopping for myself. Quite a few of the stores had the menswear on the first floor, the problem being that all the smaller stores of major retailers did not have lifts up to these floors. The shop assistants were helpful, in that they went up for me and bought down items for me to see, but that is not the point.

What the hell do you guys do?? Yes they can bring the clothes down for you, but what about trying them on? Hell, I wasn't even trying them on, and after a while if I went into a store where the menswear was upstairs I just went straight back out. Having to wait and rely on people to bring me the clothes, and not being able to browse in my own time really bugged me, so Gawd knows what it must be like for you guys who have to do it all the time!

Disabled Loos

Ah, Disabled loos, it really is like a lucky dip with them - I always enter them with some trepidation. What really bugs me is that there isn't separate female and male disabled toilets - in my perfect world there would be female, male and Unisex. I don't see why abled people should get a choice and not me!

Not to tarnish all guys with the same brush, but men can, shall we say...miss, on occasion (not that women aren't gross, I have seen some horrific sights in female toilets, but I'm deliberately being pernickety here). I would just like some choice in the matter is all!

Anyways, today was one of those days when I wished there was more than one user-friendly facilities available. On approaching the toilet, horrific bodily sounds were heard emanating from inside (Another thing that bugs me about them - we just get one door, that's it. Other people get a door, then another door. You really feel quite exposed inside those things!), and I knew only bad things could come from this.

I had to wait quite a while, and in that time I heard the loo being flushed a few times. Oh dear. Now I'm sure we've all been in an awkward situation public toilet wise, but I would hope people would leave it in a state that they would wish to find it!

After a further wait, the facilities finally became free. Edging veeeeeeeery slowly in, I then promptly backed out speedily! Oh God, the smell. The smell. I peeked in again, approaching the dreaded toilet. Even from a distance I could see that it was blocked.

Nooooooooooooooooooooo.

Success!

Today was my re-assessment at wheelchair services, a day I had both been dreading and looking forward to. Dreading at the prospect of being rejected and starting the process all over again, and excited because maybe I would finally be getting some help towards the wheelchair of my dreams!

To be honest, I'm surprised I was coherent at all during the assessment, as I was so sleep deprived from being up all night imagining all kinds of scenarios, that I was basically a zombie. Not that I'm not normally like a zombie, but this time I had the mental capacity as well as the staggering coordination of one.



Fuelled by tea, we arrive at the hospital, prepared to do battle! After psyching myself up for ages, the assessment turned out to be a pretty straight forward affair - this time a wheelchair technician was present, and I was much better at being confident about what I needed and what I didn't want. After a discussion of the different options available and my hip width being measured, I tried out their Invacare XLT.

Considered lighter than my current chair, I still felt it wasn't up to the standard of the Quickie Helium and didn't suit my needs, so I told them I would most likely want to go with the voucher scheme. Next came the "BINGO!" moment, when the technician said that would be fine, and that to ring them when I had found a suitable chair and had a prescription for me, and that they would pay some of the costs.

YAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAY!

THE QUICKIE IS WITHIN MY REACH!

I don't think I actually absorbed this good news much at the time, but after regular top ups of caffeine, it is sinking in, haha. Good news indeed!
The next step will be to get in contact with the Quickie guy and settle the final finishing touches of the chair, and sort out how to pay the rest of the costs off. :D

Like a Chicken

I am so, so soooooooo sore today. Yesterday I went to the Rehab Centre (NOT the drug kind!) to discuss the next stage of the Baclofen Pump. Before the appointment I didn't have a clue what it would be about, as the letter wasn't very specific, so when I turned up and it was actually the pre-trial assessment I was pleased and surprised at the same time.

And then mortified.

You see, a lot of cripple consultant appointments involve inspections of the legs and the muscles, which means that they kind of need to get passed inconvenient things like Jean legs.

I had not shaved my legs.

You'd think by now I would be prepared for this kind of thing, and yeah, sometimes I have no shame and don't care, but this was not one of those days. "Oh no, I haven't shaved my legs!" says I, to which the Physiotherapist present replies "Don't worry, neither have I!"
Much comforted, the pre-assessment began. Basically, so during the trail they can tell how much the Baclofen is having effect, they need something to compare it to, so they have to measure muscle tone and spasticity, and how flexible my limbs are.

This means stretching my legs in a wide variety of lovely ways. Think like when you get a chicken and pull it's legs apart to stuff it. Except the chicken is me, and the stuffer three people holding my legs down.



Anyways, after this lovely experience they went through what the aims of the Baclofen therapy, with three aims. As well as this I am being put forward for electric shock treatment, where they sent electric shocks through your limbs in the hopes of lifting the foot up more. I last had thus done years ago when I was 16, and apparently it has improved since then!

To round up this post, the next thing I should hear is when the date of the actual trial is, which depends when the Neurosurgeon is free, so when I know I will post it here.

The Holy Grail of Wheelchairs

This is my Holy Grail of wheelchairs:



The Quickie Helium. Look at it, just look at it. What a sexy beast of a chair. Oh. My. God.

And it is finally, FINALLY within my grasp! Yes, that's right, I'm taking on the powers that be - Wheelchair Services.

Last time I saw them, they point blank refused to assess me as a) I was a part time walker, and b) I had my own (albeit shoddy) chair. At the time my mum quizzed them asking what if I had come in on crutches? Oh, we can't assess you if you can walk. But then again, you already have a chair, and we'd just give you that one you've got so we can't assess you anyway.

What was I meant to do? Come in on a stretcher?!

But this time I am armed and ready, oh yes. You see, it is fairly obvious to anyone that I need a decent chair - my current one is like a tank, and is wrecking my arms from using it everyday, and weighs about 20kg. My Neurologist has written a letter for me explaining that I DO need a chair, and to top it off, I have been fitted for a Quickie Helium by the nice and knowledgeable guy at my local Wheelchair supplier.

I got to try the Quickie out and it is a DREAM. It only weighs 6kg, I can actually lift it with one arm, and I am pretty speedy on it! I almost cried when the demo session was over.

So, come April, I will have my Neurologist's letter and my wheelchair prescription, and I will not take No for an answer!

The Neurosurgeon Appointment

Right, it's been a bit hectic lately, so I finally have time to update on what has been going on!

Last month in February I went to see the Neurosurgeon who would be doing the procedure. She was very nice and straightforward, and had an example of the pump for me to look at and hold, to get an idea of what potentially could be going inside me!

So here it is:





It was a lot bigger than I thought it would be, about the size of a hockey disc, and weighing one to two pounds. That did not put me off though, I guess I will just have to make sure I don't get too skinny or it will stick out a mile!

The Neurosurgeon explained to me that because I was what they called a "walker" (even though that is only something like 5% of the time) I would probably feel the weight when I tottered around, but when in my wheelchair it wouldn't be an issue.
The main issue is getting the right dosage of Baclofen so that I still maintain some tone in my legs (the thing that helps me stand up), if at all possible, which is why I will need a week in hospital having the drug pumped into my spinal fluid via a tube, before getting the pump put in.

The thing that got me down a bit, and surprised me, was the potential waiting time between the testing stage and (if successful) actual implantation could be up to a year, as they have to apply for funding to do the procedure, as it an expensive one.

Gaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaah.

Well, at least it is getting done and the ball is moving. She suggested going back onto oral baclofen in the meantime, and when I pointed out that I would drunk 99% of the time, she said after a couple of months that could wear off.

TWO MONTHS??

I can't be basically drunk and out of my skull for two months! Though I'm sure some people would love that, I have Uni work, three Guinea Gigs, and some semblance of a social life to hold on to.

So, that's all for now!