The random rants and meaningful musings of seven digital divas (who happen to have MS)

Monday, May 28, 2007

Bank Holiday

Howdy, its a Bank Holiday a rainy Bank holiday, would love to report been up to non stop excitement today but sadly no such luck. It seems I like most people I know have been stuck in with the heating on, watching rubbish tv. Still at least there was no football on :)

For those of us who find it difficult to get out and have a social life in the more conventional sense of the world the joolys joint chat room is a fantastic place to waste away the hours. To me its like the sofa in the tv series Friends, you know your going to be able to sit down, put your feet up and chat with friends. I will always be thankful there is a place I can go and be me. So if you haven't been in yet try it and see (No haven't been paid for this plug honest)

Look forward to hearing what my fellow blogers are doing this weekend obviously something far more interesting than me!

Monday, May 21, 2007

Health and Safety

Hellooo, My rant today is about the seemingly crazy world of health and safety that disabled bods can sometimes find ourselves in. Had my physio appointment today, for which they provide transport to pick me up. For which I am of course suitably grateful. However, as I use a wheelchair I'm required to be strapped in using five separate points. Yes that's FIVE. Truly, if we ever got out of 2nd gear and picked up speed and went upside down I would be in no danger of going anywhere.

After getting strapped in by 4 separate belts to the floor, which are then tightened to within an inch of their lives (so much so my tryes actually depress to the floor with the pressure) I get your average three point seat belt as well. Then the driver gets in and DOESN'T put on his seat belt, and the escort who sits with her seat facing the rest of the bus DOESN'T put one on either! How stupid is that?!! If we have any sort of accident she's going end up all over the passengers anyway!

Think this rule thing also goes for other areas. When I moved into my flat it already had a wheel-in shower, which is great. But under Health and Safety (so the plumber told me) my shower was only allowed to be at a max of 40 c. Please note that I don't live in a care home/hospital etc. but a private home.

And I did dislike very much some rule or other being applied to me when I didn't need it. I tried arguing to the plumber that I found the shower too cold and would like the option of being able to heat it up if needed. (Like all other people in the rest of flats can do). But No... However I sorted this out after a few weeks by taking it apart and fiddling with the controls with a screwdriver LOL! Made me wonder where such rules are made up, and how sometimes as a disabled person we have our freedom on certain issues taken out of our hands under the pretence of Health and Safety. You ARE disabled you must take a COLD shower for the rest of your life!!!!!!!

Monday, May 14, 2007

One society

Shop Till You Drop
Had a really positive shopping experience today, when I was out and about not thinking of anything in particular and kept seeing lots of people with different disabilities.

*Women in scooter (crazy lady going really fast!)
*People with walking sticks/crutches
*Man who was blind using white stick
*Lady with a push along 3 wheeled walking frame
*Manual wheelchair user

Just good sometimes when you're out to see other people that live in the same area with different problems just getting on with the everyday stuff. No one was staring, no big deal. I only went around a few local shops. Just made me think that you should be able to see disabled people everyday as part of an inclusive society. Anyway, made my day :-)

Thursday, May 10, 2007

Peeing in the wind

Candy Cane
Do you ever feel that life is conspiring against you? I'm starting to feel failing is inevitable.

I started learning to drive in October 2002 when I was 17... unfortunately I didn't have the greatest driving instructor (more interested in taking my money for as long as possible) and when I had my first relapse in Feb 2003 I decided to take a break from driving, get better, deal with the bombshell that had just been dropped and attempt to concentrate on my A Levels. So anyway, roll on June 2003 when I had been told I didn't have MS, I was fully recovered from my first relapse (although looking back it was actually my 3rd) and my exams were all over.... I found myself a fantastic new driving instructor, whizzed through my manoeuvres and had a test booked in mid September. GREAT!

... If only life were that simple! August 2003, second relapse, oh sorry diagnosis was wrong... drugs by September followed bad side effects to drugs and a huge relapse, test out the window and I went into hibernation......

June 2005, nearly 2 years has passed and I'm finally feeling strong enough to start getting some building blocks in place. You know, driving, going to the gym.. just generally trying to build an adult life after having being cared for by my parents for nearly 2 years. But driving first! Driving is the key to my independence! Without it I wont be able to get my own house, or a job!

So away I go, I take my theory test first, 35 out of 35, don't know what i got on the hazard perception test... but who gives a toss its a load of crap! Start learning to drive again, after 2 years it's really starting from scratch. Test booked in Sept 05, I feel better than I've felt in years! ... until September of course.. another winter of bugs and hibernation... driving on hold till January 06

OK, January, this is it this time! Cant get a test till April but that's plenty of time, I'm quite relaxed and confident about it so I plod on. The good news is i did manage to take that test.... the bad news is there was an incident with a mini round about and i failed (deservedly). But the guy did say I was a good driver and I should go for it again, so i booked the earliest test there was in June... yes the waiting list is that long! Roll on June 10th, it was England's first world cup match at the same time so I would virtually have had the roads to myself. Too good to be true? Of course, in the early hours of June 1st I was rushed into hospital and my appendix was taken out. I did ask them if they could wait a fortnight, or give me an epidural so i wouldn't be effected by the anaesthetic but no, anaesthetic it was! I did offer to just lie really still but they seemed to think i was joking... and to be fair, i did just want the damn thing out of me.

So anyway, June 10th cancelled, August 17th booked.. got back on the horse in early July only to discover I have problems with my eyes when I move my head. I had to stop the lesson half way through cos i was feeling a bit pukey and disorientated. Anyway at this point I decided to take a rest, let my eyes heal and start again after Christmas

Bloody hell this is a long entry! sorry guys, we're on the last leg i promise

So to bring you up to the present day I started again in March 2007, January and February weren't very good months, and you need full brain and energy to drive as intensely as you do in lessons and tests. I've done ok, it's really hard starting again because you know everything, but it's become all jumbled up. When you first learn to drive you just do as you're told and build up step by step. I had a test last week, but i failed it cos i panicked in the last 5 minutes, the guy said I was a good driver (AGAIN) and told me to rebook. And I have, its in a week or 2.

So to bring me to the point of this ridiculously long blog entry (Its taken 3 days, 2 vanilla slices and 6 cups of tea to write)

Now I have a cold. My test is only few weeks away, and I'm sure the cold will be gone, but how badly fatigued am I going to be after? And how long will it last? And my theory test runs out in early June, so then I'm going to have to do that again if I can't take this test.

So you see? I really hate to sound like I have a victim mentality but I've had SO much bad luck over the last 4 years. I laugh at myself when I cry and hear myself sob 'but It's so unfair!' It's an old cliche... but it really is unfair. I am trying my best, I really am! But sometimes My MS just gets the better of me. You hear all this crap about fighting you're MS.. but you can't fight an invisible army. I'm trying my best to get on with life... but it's hard, and when things go wrong it's not my fault. And the one thing that really gets the better of me is that it's not my ABILITY as a driver that is the problem, its just the nature of having an unpredictable disability such as ours.
Don't worry I wont give up, I can't afford to, but god it's hard to keep going sometimes.

Well.... well done to anyone that is still with me. I know its a long entry but there was really no way of expressing how i felt, and making my point without going right back to the start. Next week... extracts from heathcliff

Monday, May 7, 2007

Disabled maths

Shop Till You Drop
1 + 0 = 2

Why is it when your out shopping in your wheelchair, people assume that the person next to/behind you is with you? Maybe its your carer etc. Got annoyed today went out to my local supermarket and got a few items, and the lady straight away hands the bag to the man standing behind me! Helloooo, it's my shopping that I've just paid for thank you very much.

1 + 1 = 1

And while I'm moaning about shops, which is one of my favorite passtimes, why is it when you're asked if you would like "all your shopping in one bag" and you say 'yes', do they then proceed to put it into 2 bags so 'its not too heavy'? Honestly, it's sitting on my lap so 1 bag or 2 really does weight the same! It doesn't magically make it any lighter.

Sunday, May 6, 2007

Shop til you drop!

Went out today, to get a birthday present for a friend. What can you buy someone who's got a house full of stuff and lives on eBay?
Anyway after much searching I saw some lovely glass candles, with rows of beads and buttons around the bottom. Great I think, its a nice gift, gift once you have used it its gone! It wouldn't clutter up your cupboards for years to come.
So carefully I balance it on lap and go to pay for it. Lady wraps it up in bubble wrap and we bump bump all the way home in my electric power chair. Make it all the way home reach up to get the mail out of my mail box and guess what happens.. yes you've guessed it I DROPPED IT!!!
So its true you can shop, till you drop it, looks like I be going out again on Monday to get another one then.

Friday, May 4, 2007

Oh crap

Candy Cane
I've just signed onto here to write a fantastic thought provoking, inspirational, uplifting and profound blog entry....... then I get one phonecall as I'm signing in and by the time I get here I've forgotten what it was I was going to write about
Oh well, maybe next time xx