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

Wednesday, August 29, 2007

Alan Rickman fans

Wednesday AddamsFollowing a previous Rickman-themed discussion, I thought some of you might be interested in seeing how Snape's Too Sexy!

Monday, August 20, 2007

These legs...

See See Rider
Are made for walking, and that's just what they'll do, one of these days these legs are gonna walk all over you...

Hi all..

It seems it's been a while for everyone to post a blog entry.

I think we're all too obsessed about the weather at the moment.

The last time you heard from me I was ready to run over a certain GP for crushing my latest dream and inspiration for my new found faith. From there I spiralled downwards to the bottomless pit we all know as depression.

Things didn't make sense to me anymore, I didn't know what my plan was, or how to feel. Confusing everyone around me with my baffling behaviour, as usually I think I'm pretty good at acting normal. Suddenly I was very obviously ill.

I was looking forward to the long-planned weekend away in the countryside with an old friend who was in similar distress. Brilliant, we can emit our sour odours to each other and swap heavy shoulders.

But something happened out there, my senses were cleared, clean clear air filled my lungs and all I could see was green, wide open spaces, and the only buildings present were pleasant to the eye and probably more pleasant to be in.

Now, this is what I wanted. I realised that in order to be happy I need to change my situation, physically put myself somewhere where I will be happy.

So I've been working on it. Slowly, I crawled out of my chair and pushed myself to walk on my crutches. My physiotherapist then made me swap them for something I can't lean on, so I had two very tall sticks. These were so cumbersome I couldn't be bothered and opted for my old trusty walking stick. During this time my income support had come through (finally, after 8 months!) and for once I had some money in my account that didn't come from a member of my family.

I walked so much as I loved being out of the house and having the freedom to roam free.

So last week I ditched the stick, my third leg was finally left behind and put to rest leaning behind my door.

I put on some nice clothes for the first time, got on the tube for the first time, and went to town for the first time in about 9 months. Then I had my first drink and got absolutely pissed!! Yes yes, I know, pissed on one measly glass of wine. In my own defence, I didn't have any lunch.

So here's a toast to (as Smokey said) taming the beast!

This weekend I am going to a wedding, I've made my own dress, I'm going to wear my high heels and I'm going to be fabulous! I am also going flat hunting.

So who knows where I'll be next week, hopefully a step closer to being happier than I am now!

Sunday, August 19, 2007

More stupid carers

Shop til you drop
For those of you who read my last post on my lovely new carer, you'll be sad to hear that there hasn't been much improvement. In fact she has grown on me in poor amusement factor alone.

Her gem of this week was asking me in a patronising tone "Do you have a boyfriend?" Urm, no, not right now.

"Oh you should get yourself a lovely disabled boyfriend."

I suppose he has to be disabled I mean who else would want to go out with me?!

Then, as if to elaborate the point, she adds "I know this LOVELY disabled couple..." and she goes on in detail about their personal disabilities (Firstly, I don't want to know! Secondly, that stuff should be private with the agency).

Then she says, "Oh, but I don't know how they have SEX!"

Just when I'm about to point out that I'm sure they manage just fine she starts pulling yucky faces and making 'tut tut urghgh' noises!!

Amazing to think this is a women who's is working in the so called 'caring profession'. And the sad thing is she has no idea that what she says is inappropriate in the least.

It was her last day on Friday and I was wondering with what marvellous upbeat message she would leave me. Instead she patted me on arm saying "Aww I don't like to think of you here being on your own, you poor thing... awwwwww".

This is as I'm waving her out of the door - locking it behind her!!

Anyway, I've got a new person starting this week- can't be any worse... surely?


... and shuttlecocks

I've never been able to decide if love is necessity or science. But either way it's nothing special. I've dressed for the part. Played the character. Not that it wasn't genuine. Just that I felt obligated to condition.

Its strange how instead of healing me, it only made me worse.

But as with any drug, I still wanted more of it.

There are rehabs for every kind of chemical dependence. Yet no one questions our health when we're addicted to flesh. Or someone's indifference to our affection.

They warn us about heroin and cocaine. And even drugs as tame as pot. But there are no warnings about the dangers of love. There are no rehabs for rejected lovers. No drug to simulate the punch of the first kiss.

I don't mind being alone. I'd just like a choice sometimes. Between everything and nothing.

Smokey xXx

P.S. My MS is good, so got nothing to report on that front, for now the beast is tamed!!!


Wednesday Addams
I think shop-till-you-drop and I should form an Irritating Carers Support Group. Not had anything as extreme as her recent problems - but today I had Mrs Patronising. You know the type - feet together, clasp hands, lean forward from waist, talk LOUDLY in one syllable words, chortle in patronising way at anything I say that indicates I might actually be a member of the human race.

"I was at the shops yesterday"

"Oh you were AT THE SHOPS? Did you buy anything NICE? *chortle chortle*"

"No it was mostly just things like paying bills"

"Oh *chortle chortle* you PAID your BILLS, that was GOOD"

*suppresses urge to rip her arm off and beat her to death with soggy end*

Friday, August 17, 2007


Wednesday Addams
Sorry I've not been blogging much recently. It's because I've been asleep most of the time, and my sleepwalking doesn't run to sleeptyping yet...sorry...will practise...zzzzzz

(Silly MS)

Wednesday, August 15, 2007

SCA Faire

The SCA Faire went well, I met my Ex there, and erm one thing lead to another and we are now back in contact with one another, and going to give this friendship lark a go.

I can't get him out of my head, so perhaps this is the better way of doing things, no contact for a month and still my feelings are strong. And by his reaction on Sunday it must be something close ot it for him too. I am not expecting more than friendship, that would be daft, but I hope it will bring some closure.

The cats are all asleep and I have a stinking cold, so I am going to go and join the cats.

All the best

Saturday, August 11, 2007


Hi all,

Sorry been so long since I have written. Just had nothing much to say, and haven't been online as much as I usually am.

I have had two colds since I last wrote in here. Been dumped and erm ... applied for jobs, had job interviews and got turned down for jobs after jobs.

I had a family BBQ today, to celebrate my birthday, it was a day early cause my father is going away tomorrow, so it kinda made sense. It went well, had some tasty yum-yums, which I ate a smidgen of, my throat is very sore so struggling to eat, but it is getting better I think.

Tomorrow I am going to an SCA Fair. I will try to let you know how that goes when I find out myself. It should be good.

Have a fantastic weekend. Be good and take care of yourselves.

All the best

Wednesday, August 8, 2007

Got hot

Naughty But Nice
Hi all, hope you are all feeling fine and if it has got hot where you are hope the heat isn't draining you too much. Yesterday we had to go and run some errands and after a few hours in the car I was completely flaked out (and we have air conditioning!!!). Thankfully it has cooled down a little today so it's much more bearable.

Well got my UTI sorted. It seems the 3 days worth of anti-b's I got given was enough to knock it on the head, so thats good. And I was fit and well and rearing to go at the Prince concert. I had a really great time and he was absolutely fabulous!!! I think it's the best Prince concert we've been too and we have been to quite a few. Anyway I won't go on about it here as I know he isn't everyone's cup of tea (eh Candy Cane?? lol). All I can say is roll on next Tuesday!!!

I joined facebook a couple of days ago, no idea what I'm doing but found a few people I know on there, I really think I am going back to my teenage years, what with a myspace page and now a facebook one lol. Oh well I am sure it will keep me entertained for a little while.

Monday, August 6, 2007


Hi All,
Being a while, cross between being busy and being very yuck. Still, had a few days of nice sunshine so the world seems a brighter place!

Bit of a moan today about the agency who do my care. My regular lady is lovely, does what she's supposed to do and generally doesn't do my head in too much. But she's off on holiday for 4 weeks (off to marry some distant relative abroad).

So the agency sent me a NEW person. NP. Looked promising. She arrived on time at 10am.

First thing she says to me is "Hope you've not got a lot for me to do. I'm really tired!" How's that for a promising start? Went downhill after that!! She took 25min to change my bed, even I could have done it in that time (ok, I would have to spend the rest of the day in bed but...). She claimed "I can't do quilts". Huh? Presume you do your own , never mind it's part of your job!

Asked her to hoover my tiny flat's living room. She huffed and she puffed (she didn't blow the house down but it would have made a good story).

Was going to get her to mop but I'd had enough of her attitude so she left. Then I checked the book and even though she got off 25mins early she's claiming she did the full 1.5 hours. Despite managing to ignore lots of things that needed doing, and on a go-slow .

Grrrrrrr... I hate it when I have to motivate people to do things. Lucky me, I think I'm stuck with her for the next 4 weeks. But if she's going to claim my time then I'm going to have to make her work, even if she's moaning and groaning.

Don't understand why some people do this job if they're going to grumble?

My flat not that an unpleasant place to be. It's not an out of 'How clean is your house?' hellish environment. Oh well, I'm going to have to put my foot down. Shame that you have to be like that with support people who are supposed to make your life easier!

Wednesday, August 1, 2007

Hospital visit

Wednesday Addams about two neurologists, three opinions!

First off, he doesn't think I'm suitable for disease modifiers, as I'm not having "typical" relapses (trust me to be awkward, eh?) He thinks there's a possibility I might be helped by Mitoxantrone (Novantrone) - the drug you'll hear some people referring to as "chemo". It's a cancer chemotherapy drug which you get through a drip once every month or every three months.

The idea is that it calms down the immune system and stops further damage to the myelin. It does have risks though, including potential heart problems. He didn't sound that wild about my suitability for it, but he suggested I went off and read up about it, then came back in four months and saw him again.

In the meantime he's going to get some extra information from my existing neuro...because guess what...he's not convinced I even have MS!

*hits head against wall