Glastonbury

Well I survived the Glastonbury weekend!!! Might be something to do with the fact that we were seated in the comfort of our own home watching and taping it all (thank God for Sky+). The last part has just been recorded and in total it filled 20 DVDs!!!! It was great and my only gripe is that I wasn't there but I don't think my wheelchair would get on to well with the mud. I did get to do a muddy glastonbury in my dark and distant past, and must admit that I didn't enjoy the mud. That was our festival year when we did 3 weekend festivals in 4 weeks (one of them being in Scotland) and then a little break before the 4th one. That was a tiring but very exciting summer.

Nowadays it's just indoor, mud free gigs for me, but there's still the thrill of seeing one of your faves up there singing their little hearts out just for you (or so it feels anyway).

So what will I do now all of Glasto has been viewed. I will look forward to T in the park next weekend!!! yay!!!!!!!!!! (And I don't have to do the long drive to Scotland this time - double yay!!!!!!)

Grumpy...

but gorgeous.

Thats right, I'm grumpy! I have nothing else to say, but i wanted to share my bad mood with you all! Bah Humbug!

Cats grrrr

I swear my cat is trying to kill me today.

He keeps wrapping around my feet as I am trying to walk, lying on the stairs and now jumping on my head.

Oh, and he has turned the computer off twice, chewed the wire to the rooter (thankfully my father has spares of almost everything computer related), brought home a mouse (the animal kind), and ran out the front window and across the road with a pair of my knickers I was sorting out to put in the wash. They were dirty and old, totally non-sexy ones, I am wearing pads at the moment, so need comfy ones that hold them in. NOT for the whole street to see.

A whingy one

Well here I am with my second entry (and hopefully not my last) but I am sure that this entry will probably upset some people (sorry in advance if it does.)

I live in a very small cul-de-sac and live in the second house in from the main entrance. There is a school situated on the other side of the main road that our close leads off of, about a five minute walk. Now why would this bother me,you ask, being that distance away, well it's not the school but rather the mother/fathers on the school run. Yes THAT problem.

I am sorry and I haven't children of my own so do not have the problem of getting them to school BUT why do they have to park right outside my living room window. There is a new housing estate next to the school but they can not park there and have obviously received tickets or been clamped doing so. So they have decided to park here instead, even though it is clearly marked 'no parking' here too. They even have the cheek to park in resident's parking spaces or right under the no parking sign.

This can cause me numerous problems if trying to get out in my wheelchair or I come home from somewhere and one of them is parked in my space (which I need as I have the space to get the wheelchair down the side of the car easily). If the council would get their act together and come and replace my lockable post (which was incidently knocked down by one of their contractors) then this wouldn't be a problem. As well as this we have to put up with some of them looking straight in our window, screaming kids, or even better them screaming at their kids.

I have made numerous complaints to the council who's signs they are, but they say there isn't much they can do, how about contacting the school so they can send a note home to all the mums/dads or better still come around and give them tickets or clamp them here. gggggggggggrrrrrrrr

Sorry rant over and I suppose this is as much a moan about how useless the council is (aren't they all). Thanx for reading lol

Hi fellow bloggers

Hey Hey my first post here and I really hope I am doing this right and I don't muck up this whole blog. Just wanted to say a quick hello to all the bloggers here - I have been reading your stuff and you are all great. I just hope I can be half as interesting as you all.

Now I just have to remember how to get back in here lol

On my soap box

I’ve been sitting watching the news the last few days. No that is wrong; I watch the news most days, for the majority of my life. It is just the last few days events that I want to mention, that leave me awake at night, staring into the darkness, stroking the cat and pushing him of my chest again and again.

OK, one is “Action threatened over air fares” where the Office of Fair Trading has threatened to take legal action against airlines in an attempt to tackle what is says is ‘misleading pricing’. Whereas I agree that the pricing is often misleading, and what you thought at first was a bargain turned out to be no better because of hidden costs. But it is up to the consumer to ensure that they know what these hidden costs are before purchasing. If they find out, and then another cost is added on they can argue their cases. We all know, or at least we all should know, that when it comes to things like air fares there tends to be hidden costs, that they may be quoting fares without including extras such as taxes for years. So;

1. Why now is the Office of Fair Trading giving a crap?
2. Will anything actually change?

The good news is Easyjet, Ryanair and Thomas Cook are saying they are 'working towards compliance', but to find out what this compliance is has proven to be more difficult, although this morning the BBC News website has provided more details. Basically it seems that travel companies have three months to include all fixed, non-optional costs in their basic advertised prices. Which I agree whole heartedly would be a good thing, what is bothering me is why OFT decided to do something now, and will they really take companies to court to make the changes if they are not happy with the progress, or will they extend the deadline as they have a history of doing?

“Patient Bleeds Dark Green Blood” - This story came out as a team of Canadian surgeons got a ‘shock’ when a patient they were operating on began shedding ‘dark greenish-black blood’. The patient’s leg surgery went ahead successfully. The blood color was due to large doses of Sumatriptan (A migraine medication) which caused a rare condition called sulfhaemoglobinaemia where sulphur is incorporated into the oxygen-carrying compound haemoglobin in red blood cells.

Ok so that’s the news story. According to the science fantasy television series, Star Trek, Mr Spock had green blood because the oxygen-carrying agent in Vulcan blood includes copper, rather than iron, as is the case in humans. Mr Spock had a human mother, and a Vulcan father, from whom he inherited his inability to make sense of human emotion, as well as his green blood.

Why am I mentioning this story? First of all because I found it fascinating and secondary I struggled to believe it was true. But what I found frustrating was that no one seems to mention whether this green blood was causing the man harm, whether he is coming of the drug that caused this. What the risk is for other people on that drug. If I was on that drug should I be worried?

Ok next news story (I will try and make the rest short) is the problems in the Gaza Strip. What I want to mention is not the details of what is happening there, who I think is right or wrong. But it is the other countries. The ones who feel like they can take a moral high ground. They can sit in their comfortable offices making quotes like “British Foreign Secretary Margaret Backett stressed it would be wrong for Hamas to benefit from its seizure of power”, South Africa called for the “unity government to be restored”, Sweden is applauding Abbas’s decision to nominate political independent Salam Fayyad to form an emergency government. The USA has already given full backing to Abbas, saying “he acted well within his lawful authority and we fully support him in his decisions to try to end this crisis for the Palestinian people and to give them an opportunity to return to peace and a better future”.

Who are we (the British) to say who is right and who is wrong. We have done the same thing in the past; it is what has made us who we are today. Did these people in power not learn about the English Civil Wars in the 17th Century? Where we butchered one another, executed a king. The Bishops Wars 1639-1640 were Charles I tried to push opinions onto others, I think the Scottish Church. 1642-1651 when there was HUGE tension between the throne and parliament. Without these wars we would not have the democracy we have today. We would not have the power to sit on our back sides judging other countries, muttering how awful and barbaric they are when WE ARE NO BETTER?

America had its own Civil war in 1861-1865 and they were no better than the rest of us. The French in 1871. Russia not that long ago in 1918. All through history you can see where countries have had Civil wars, and although I to not think any war is good, but sometimes wars are needed and just.

We should keep out of this war, we have no place to join in, and we have no right to comment. We should remember that the only reason we have such power is because we are in the shadow, in the shadow of America who says we can have this power and becauce we were once a powerful force with a great empire. What are we now, what power do we really have and deserve to have? We can't even defend our own country!

Ok that’s me off my soap box. Health wise I am good, my bladder is on over drive, I think it is on caffeine high, it is always so active, I don’t know where it is getting all its fluid from. I have pins and needles back in my feet, so I am happy, they went numb for a bit so at least now I can feel them.

Sorry for my long rant and thank you for getting this far

Love ya all

Smokey xXx

I am still here

I am still here ....

I first of all lost my password to write in here, then been busy falling in love.

I haven't got long as going out in minus ten minutes.

Just thought I would let you know that I am good, and I will write again

Colouring my hair...

Hi there,
Decided to try and add some highlights to my hair - so I got one of those box kits you can do at home. Cant be that hard I thought...

Followed the instructions

1. Dampen hair - which means having to try and wet hair in sink, without giving yourself a bath at the same time.

2. Mix together bottle A and sachet B - if you can get them open it would be easy!

3. Divide hair into sections and cover with mixture using wand supplied - ewk panic arms are killing me by this point, and I'm tierd so one eye is going bit blurry. So trying to pick chunk size strands to highlight whilst wearing plastic gloves is no easy task.

I know I haven't got the highlights in the same place on either side of my head but not much I can do about it. Its taken me ages and I'm bit concerned as supposed to leave it 10minutes form time of last application. However its already 25min since I started and don't want my hair to go funny. So I throw the wand around a bit, sit back and wait...

4. Rinse hair then dry - dum de dum, moment of truth, Actually not bad , not bad!
Quite impressed some subtle hints of colour without looking like a 3year old has been let loose on my head. Looking good :)

How clever am I!

I did it! I did it! I got the tube in the little hole!!!
... Its not as little as it looks you know!

Ball Bags!

Well, it's Tuesday 5th of June, the day of my driving test... only guess what.... I had to cancel!

Unfortunately this time it's nothing to do with my health.. in fact I wish it was! My big brother died in a motorbike accident 2 weeks ago, and frankly there is just no way I could get behind the wheel of a car at the moment. Not to mention I'm bloody knackered!

It took 10 days for us to plan the funeral, with the post mortem, bank holiday, inquest, and the obligatory family feud. By the time I got there I was dead on my feet.

The stress hasn't so much effected my arms and legs, which is lucky as I now have 2 children and a sister-in-law to help look after. Unluckily, from the moment the policeman knocked on my door to tell us about the accident my bladder went into spasm. My sister-in-law also has ME so she is my main concern. (And yes funky mango.... I know if I don't look after myself I'm no use to anyone else)

On Friday (just gone) I went 24 hours without a pee, ended up in casualty by 10pm... had to wait another 2 hours before they hooked me up with a catheter and you should have seen the bag when they had finished draining my bladder... it literally took the piss! There was 500ml in the bag... and a remaining 100ml in my bladder by the time they had finished at 2am (frankly i didn't care about the last 100ml, I just wanted that bloody tube out my wotsit and to crawl back into my nice comfy bed). Apparently our bladders are designed to hold between 350-450ml of urine... man I must have been ready to pop! I'm surprised noone asked when i was due!

Anyway, this morning I've been to the wee nurse to learn how to self catheterise. I know lots of people fight this and really don't want to do it. But hey, what's all the fuss about? I mean... I've been having periods for 10 years now so I'm quite used to aiming 'down there' as it were. noone has to know what you're doing. you can hide the wee lipstick catheters in that little pouch at the back of your handbag were you keep your tampons (and cigarettes when your parents still don't know you smoke at 21 :-s ) and you go off and do it in private. I feel in no way undignified, or less of a woman. In fact by doing it i feel i can reclaim being more of a woman. It's better than being sore, uncomfortable, prone to infection, and worrying about dribbly bits when you're having sex! (I blame him.... messy bugger ;-) ). C'mon girls, get catheterising! (Sorry I'm not encouraging you boys but frankly you have it easy, yours is much more accessible and dangly you just gotta stop being so squeamish!)
This might seem like a strange entry, jumping from my brothers untimely death to catheters but its been a loooong and eventful 2 weeks. i would just like to finish by paying tribute to my big brother, he was a miserable git but I wouldn't have had him any other way. Goodbye Patrick, I Love you xx

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!

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!!!!!!!

One society

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 :-)

Peeing in the wind

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

Disabled maths

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.