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

Wednesday, June 27, 2007


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!!!!!!)

Friday, June 22, 2007


Candy Cane

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!

Thursday, June 21, 2007

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

Sunday, June 17, 2007

Hi fellow bloggers

Naughty But Nice
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

Saturday, June 16, 2007

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

Saturday, June 9, 2007

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

Friday, June 8, 2007

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 :)

Wednesday, June 6, 2007

How clever am I!

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

Tuesday, June 5, 2007

Ball Bags!

Candy Cane
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