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

Saturday, March 31, 2007

April fool's day poem

Today is April fool's day
And my little joke on you
Is not a whoopee cushion
Or some phony dog poo-poo
It's not a made up story
For which you'll surely fall
It's not some plastic vomit
Or a Richard Hertz phone call
My April fool's joke on you
Is a more conceptual thing
Than flies inside your ice cubes
Or a little squirting ring.
My April fool's day prank on you
(Oh this will really show 'em)
You've already suckered for it,

Tuesday, March 27, 2007

I love my friends

Last night I wrote a letter to a very dear friend of mine who lives some distance away from me at the moment. I would like to share with you an excerpt from it, as it wasn't until I wrote it down that I finally "got it", understood what it was I was trying to understand.

"... The one thing I have learned about happiness, it will never last pretending you are not you. Somehow the truth will arise and all that you hide will show through. Sooner or later, one way or another, something in your life seems wrong. You go to bed unhappy and awake the same, repeating life's mistakes too long. One day, to yourself, you begin to question "Is this who I am and wish to be"? How will I choose to live the rest of my life, till death comes? Most people wish to be at peace with G-d, oneself, and those we love. Frequently taking a look at our past.

Insanity is often defined as "doing the same things again and again, but expecting a different result" the seeming inability to learn from past mistakes. To learn you must look at who you are, really are. Not the mask that you have worn for so long as a disguise and protection, that you stopped long ago remembering what was under the mask, then eventual forgot you were wearing a mask at all.

In primary school when you ate the paste, it wasn't because it tasted good, it was because it was forbidden. Every night used to be primary school, and every drink, drug and person the paste. In first grade when you told the boy, you didn't do it to hear him say he liked you. You did it because you knew it was hopeless. Everyday was first grade, every drink, drug and person him.


That is the evolution of survival, that surviving depends on amnesia. The innate tendency to discontinue loving anything, anyone that is gone. That is life. That is its sour seed that grows inside each of us. This is the frailty of life. A paradox of loyalties that invariable cease the moment we can't use them anymore. This is the truth of happiness. A swarm of bees attacking as we catch the bits of nectar that drop. There the future was writ in forbidden paste on primary school lips. Our paradise lost before we ever knew we had them. ..."

Obviously I cannot go into the problems that led me to write this letter, at the time I wrote it. All I want to say is, be who you really are and do not hide behind any masks, otherwise you risk your happiness and sanity. I have lived behind a multitude of masks myself, and always had a reason for them. "It's a psychological disorder", "It was the drugs", "The drinks", "I had to for my boy friend", "It's to help me with MS", again and again I would put on a mask, build the walls, and cocoon myself in pure insanity. Again and again I refused to see the pain and sadness was due to the masks and not from what I was trying to protect myself from.

I missed out on some of the apparently "best years of my life" because I was hiding. I can now see that I was hiding from myself, after all I am my own worse enemy. I just ask, and beg that you do not make the same mistakes I have. Be who you are and be proud of that. You may flaws, you may consider you have more than the next person, but they are part of you, they make up the building blocks of you. You should be just as proud of your flaws as you are of your achievements, because you become stronger by learning from your mistakes than do from the things you get right.

To all my friends, thank you. You have supported and chided, laughed and led, hugged and yelled at me. For all these acts I am so grateful to you all.

Have a great week and brilliant health.

Love Smokey xXx

Monday, March 26, 2007

Get posting

Candy Cane
Hi everyone
It hasn't gone unnoticed by me and smokey smokey that we only have 1 regular commenter... the delightful funky Mango. Please join in, we have found this whole experience quite daunting and would love to get some more feedback from everyone, especially other young women with MS.... And young men!!! (we would all LOVE young men) . We're writing this blog WITH you, not FOR you.. come on, its a chance to make some friends
love ya's xxxxxxxxxx

Sunday, March 25, 2007


Curse having a blessing attached

I stated in my last entry that MS is both a blessing and a curse, and at the moment I consider it a curse. But as with every situation there is a silver lining.

Apparently my irregular, painful and energy draining periods, are MS related. Not that I have them is MS related, I have them because I am female, but the fact that they are often and unusual is MS according to my neurologist. During the few days I am "on" I lack energy and my appalling balance gets far worse.

But this week it has given me the perfect excuse to refrain from seeing a particular person. I was invited to dinner, which I absolute despise attending. She means well, do not get me wrong, but she lacks common sense and never shuts up. Her tales of the world are pure boredom when they are first shared, when you hear them for the hundredth time they are suicidally boring.
She goes away for a couple of weeks tomorrow (Monday), by the time she gets back I will have more energy, I hope, to cope with her.

Thank you Funky Mango and Candy Cane for the hugs, I really did appreciate and need them. I am coming back on form, and body is returning to normal, whatever that may mean.

I had a AGM to attend this morning at 10am, when I turned up at 11am did I then remember the little fact that the clocks go forward. Once again a silver lining as I missed a majority of a very boring meeting that I was expected to attend. Sometime MS can be a blessing see

Have a great week and even better health

Hugs to all

Smokey xxx

Somebody stop me!

Candy Cane
Will somebody please sit on me! I'm SO tired and i just can't stop doing things. every week i look at the nice empty pages of the following week..... but slowly they keep filling up! I'm not going looking for these arrangements they just keep finding me. Next week I've ended up with a bikini wax, a dentist appointment, a meal with a friend who's returning home to Sweden for a few weeks AND a meeting with a graphic designer... nevermind though, there's always next week

Friday, March 23, 2007

Blessing and a curse

For me MS has been both a blessing a curse. Today it definitely falls into the curse section of these delicately balanced scales.

Later I will explain why it has fallen into the cursed category, but for now I am heading off to bed again, and I may be some time.

Tuesday, March 20, 2007

World gone mad

The World has gone mad

In my local parish the council are planning on building yet another eyesore in the village Which myself and a group of people oppose.

We have made our feelings heard in the monthly Parish Council meetings and local papers and radio station. We have contacted the Council and other people involved and those not involved but who should be. We have sent out flyers and demanded a public meeting so it cannot go unnoticed and "slide" in like they were hoping. Because of the information we obtained we were able to make a strong case against such building.

Why I am sharing this with you? For two reasons, one of which I managed to argue for disabled access for the local park and advised them on where to get grants and funding. The second reason is because it has provided me with many laughs today, and I want to share with you what made me laugh.

The Parish Council, during their last meeting, in the "private sitting" once the public time is over, voted to NOT talk with me or anyone involved with me in any ways. Cutting of many ties to information that has been keeping me and my friends updated on events. I cannot wait for the minutes to be published! How the heck can they silence people, order them not to talk to us. Oh I should add the vote was to not to talk to us at all, about anything. So they can't even say hello as they pass us in the street. How stupid is this? What are they so scared off?

I admit I wind people up, got them behind me, and rightly I suppose they have come to the conclusion that I am the ring leader. So can they seriously be scared of our group and what we can do? The person they have marked as the ring leader is in their early 20s and usually ignored due to walking with a stick, the whole "shes too young, and she is disabled what does she know?" attitude.

We started off as a group of four, now we have a group of fifty two, that meet up every week to discuss anything new that might have been discovered or dug up.

They must know that they cannot, nor will not, silence us. We have other ways of getting information, the county council, and other people involved. The whole thing is ludicrous.

I am laughing so much as I am writing this, that I feel the need to apologise for any spelling mistakes and typos that may have slipped past me unnoticed. I apologise also if you do not find it as funny as I do, perhaps it is something, you have to be here to get it.

Have a great week and good health


Sunday, March 18, 2007

I finally made it!

Candy Cane
I first came here on Thursday night.

I got off to a bit of a shaky start when I typed my full name (my real name, not Candy Cane) into the bit where I should have been typing my password.

THEN I finally get in... and I can't remember how to do a new post.

I stared blankly at the screen for about 10 minutes... then decided to go to where I saw a gorgeous black, backless jersey dress. Only I can't really justify buying it... unless someone is having a wedding soon and wants to invite me... please leave invites in the comments area!

Internet shopping has been a godsend for me. I mean, shopping at home, sitting down... where it's warm and I can have as many cups of tea as I like... that don't me cost a quid! Plus you only need one lot of energy to go out and wear it, not an extra lot to drag your ass round town hunting through rails as well. I used to love it, but these days it all seems so much of a hassle, so anyone who hasn't yet tried it, get yersel' online, you'll love it!

Saturday, March 17, 2007

Let me take you back

Let me take you back to the beginning of me and MS

I was never the calm collected person, I was the girl who had everyone worried because I would go out for a week of drinking and lose my mobile, so there was no contacting me. Realistically I would throw my mobile in a stream or in the middle of the road so no one could disturb my self destruction. I was the daughter of an ex policeman who worked in the drug squad, yet probably handled more drugs than my father did. I was the girlfriend, who couldn't be tamed, controlled yes for a period of time, but my old flame would come through.

In brief I was a wreck, I thought I was living life to the full. Realistically I was living life so close to the edge it was no surprise when I constantly fell over it, ending up in hospitals and police cells. Even when I was going through MRI scans and Lumber Punctures, I refused to sit back and pay attention. Nothing could hurt me was my attitude. I was warned by my GP and neuro that they were testing for MS, but I was in denial big time, my thoughts were "No way would they come back, telling me I had this MS thing".

I knew people with MS, in varies stages, I knew someone who was wheelchair bound with PPMS, I knew someone who was "normal" who didn't look sick, but had slowed down because she got tired easily. I knew someone who was up and down with MS, sometimes appearing as if nothing was wrong and other times could hardly stand. MS not a new concept for me, I knew what it was, I knew what it did. I was also sure I didn't have it.

Yes I had some tell-tell signs that I had MS, obviously otherwise I wouldn't have been tested. But I could argue with myself other reasons for them. The black dot in my eye, which was Optic Neuritis, was a slighted tarred area of my eye from smoking. The jumping foot, that was a trapped nerve, it would go. The lack of balance, that was because I drank to much or it was the drugs. Surely it wasn't all combined and the results wouldn't come back as me having MS.
I manage to convince myself that I did not have MS, so I went to stay with a mate for a week when I knew my doctor was going to ring me with my results. My mate lives a couple of hours drive away. On the 12th August 2004 I received the phone call that changed my life. My GP and neuro were on the phone and they informed me that I had RRMS and wanted me to make an appointment.

I put the phone down before making an appointment. And just sat there. I was trying to work out how to tell my boy friend, whom I promised to care for and look after, yet it maybe me who needed more looking after than him. How was I going to break it to my parents, who were out of the country at the time, that their daughter, who was already a "no hoper" had this thing called MS. How was I going to carry on with my life when I didn't know if next year I would be able to on my own.

I had accepted MS in other peoples lives. It was something that "Joe Bloggs" round the corner had. Not me. I didn't have time for it, I didn't want it.

Then I started blaming myself. If I hadn't lost so much control over my life to addictions, perhaps I wouldn't have had MS. I know now that this is a load of BS. If I had lived the angelic life I would still have MS.

Finally I got round to telling my boyfriend, I was worried he was going to walk out on me. But he was a gem. He was patient and talked through my worries with me. He went on the Internet and found a list of symptoms and told me to tick the ones I have had in the last five years, no matter how little I was effected by it. So I sat down and went through them, then I realised that I had MS. No matter how I argued the situation, I had MS, I had to deal with that.

I was lucky, I had people to talk to, people prepared to help me come to terms with it. Some knew more than others, but my friends during that time could not have been any better. They took the concept that I had MS like a duck to water. It was the dark hours, in the middle of the night, when everyone was asleep and I was lying there staring into the darkness, that I could not escape the truth, that I could not laugh it off or make a joke of it with my mates. When the only person I had to share my thoughts with was myself. It was these hours, night after night, that I rearranged my life, that I came to terms with my diagnoses, no longer could I maintain an inner denial. The only way forward, and to get a night sleep, was for me to accept it.

When I finally did fully accept it, I called my GP and made an appointment. He gave me some leaflets and numbers, talked through all the medications there were and the reasons why I couldn't take them. Main reason I couldn't take most of them was because I was allergic to one or more of the ingredients. I wouldn't say the appointment was a complete waste of time, it was a step, a step to help me fully accept I had MS.

Once I came to terms with the fact that I had MS, I realised it did not have to impinge on my life, nor life style. There was no reason for me to change who I was, nor stop what I do. If an MS symptom came up that hindered and activity, there was plenty of other activities I could do, or I adjust the one I was doing.

So by December that year I went back to being me. My foot was still twitching, but I would still go off for a few days, drinking, socialising etc, the only difference was, I stopped chucking my phone away.

Looking back I have noticed how much I have changed. I very rarely go off now. I don't drink either. I am much calmer. Gosh I think I may have finally grown up!

Did MS help me grow up? I doubt it, but I can't prove it. I am still me, I am still annoyingly hyper at times, and depressed other times. I have not grown up fully, I will stay young forever! That is my pledge to you. "Life is to long to grow up in."

Have a good weekend and great health

Smokey xXx

Wednesday, March 7, 2007

Checking in

I haven't really got anything i want to say... well that's not entirely true i have plenty i would like to say to you all but putting my thoughts & feelings down just doesn't come easy to me at the best of times.So ... well you guy's will know better than any one how it is when your brain is constantly in a fog. Ughhhh !

Lost in fog.


Today I have had the greatest experience in my life. Well that is how it feels at the moment.
I manage to pee. Not just a pathetic little trickle that left me feeling like I still needed to go. But a full blown, full power urination period. Never before would I have thought the sound of my urine hitting the toilet bowl, would sound so sweet and musical !

And the trick ? There is no trick, it just happened. Just felt the need to go, so went again to try, and wallah it happened. Magically my bladder had enough of with holding my urine from my urethra, and released. Sorry for keep going on about this, but it is such a HUGE part of my life at the moment.

I decided I need a hobby, oh and a job. But a hobby maybe a good start. Can't decide which hobby to take of. Anything that means motivating me off my ass is just not appealing at the moment. I lack energy, which is unlike me, but everything is so much effort, even waking up or falling asleep.

Anyway have a good week, and great health.

Monday, March 5, 2007

Shopping trip

Shop Till You Drop
Ok I like shopping, my name might give it away just a teenie tiny bit. Went in one of my regular shops today. For some reason whenever I'm sitting in the queue the person who comes up behind me will always ask "Are you in the queue?" OK "always" being last 3 times

Which is getting frankly rather annoying,There might be few clues to give it away.....

I'm sitting at the start of the cattle pen that leads to the cash desk
I'm holding something on my lap
Ive got my cash card in the other hand
Bags hanging off back off wheelchair
I don't look like I work there/stock taking/modeling or doing health and safety audit

Now while a simple question shoulnt be so annoying its really winding me up!!
So any tips on how to look more like I'm shopping send them this way!

Sunday, March 4, 2007

What to say ...

What to say ...

This week has been uneventful. Everyday I woke up to let the decorator in, and then dozed on the sofa for the remainder of the day.

On Friday I woke up, let Bob the decorator in, then took my little Tom cat to the vets to discover that he was not fully neutered in the first place. So I am taking him back down this Friday for the operation.

Also this Friday I went into London to watch the Tempest, a Shakespeare play. This was tiring but good. I spent all of Saturday in bed recovering.

Thank you all who gave suggestions on how to get my bladder to do as it should. I have tried wiggling my butt, shouting, tilting my head, independently and together, but to no avail. It still does not like peeing. The mission continues!!!

That is all I can come up with to share with you. My health seems to be getting better. I can at last walk unaided. All that remains in my bladder problem. I have been to the doctor who tested to make sure there is no infection, and there is none. Good old MS.

Have a good week and good health


Sunday afternoons

Shop Till You Drop
Hello all,

Don't you just love Sunday afternoons... sitting on the sofa with the papers. One flick, and they all end up in bits all over the floor with no hope of ever being put back together again.

There I was, sitting all absorbed, when I suddenly realised that I had been reading one of those little magazines they tuck inside. You know the ones. I think they are designed especially for the over 50s. And it was only when I was halfway through and considering that the raincoat with a hood was a very good idea that I had to wake up and go "NOOOOOOO!"

I have to admit that some of their little gadgets are very good and might indeed come in very useful. But I think they need to work on their presentation. Although we could all do with something to keep our feet warm indoors, how about something to keep you dry in a wheelchair, or to keep your walking stick from falling over?

I have yet to find a company that does anything like this that still looks good!

We usually end up cold and wet, covered in a tartan blanket or in a blue furry Eskimo outfit.

Until people realise that I might need equipment but still care about how it looks, I will have to hold off on the shopping spree.

I'd better hide magazine now in case someone thinks I'm hinting for a birthday pressie or something! Though I will keep it, just in case it may come in handy one day...

Hold on!

Candy Cane
Sorry posts aren't appearing quickly. I'm working on it! Keep looking and I/we will be up to speed soon.

It's all a bit daunting, this is!