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

Saturday, December 29, 2007

Merry xmas, bog off!

Candy Cane
Merry Christmas, but bog off!!

Of all the months I really couldn't be arsed to get ill it was December... and guess what!!

No matter how prepared you try and be, and when you have MS you gotta prepare, a spanner always ends up in the works. And my spanner is known as tegradol!

I was half way through my xmas shopping, doing well, no extra fatigue and no stress... when I was hit with a nice dose of trigeminal neuralgia (I think... I'm not really sure, might just be a dead bad headache). So they started me on this tegradol and I just slept for 10 days! That's 10 days taken out of valuable shopping/visiting time. Which means you end up cramming it all in together instead of pacing yourself and it just becomes a nightmare!!!!!!!

And of course you always get some idiot who turns up unannounced and thinks that seeing as you're not doing anything they can stay for hours (the unnamed perpetrator did bring After Eights... so I made them a cup of tea) not realising the knock on effects of their spontaneous arrival.

This Friday afternoon had been my designated 'rest' day where I would make my last piece of jewellery for a present, make a few cards and wrap some presents at a leisurely pace. Instead, this one hour visit zapped my energy, and gave me less time to get things that I NEEDED to do, done! Meaning I had less energy to do things in half the time, resulting in pushing myself. I then had to cancel a meeting with a friend that I'd had planned for the next day because I needed a new rest day as I was knackered! And I mean the knackered you get when you are so expended you don't have the energy to speak. I was gutted too, I was really looking forward to seeing her. :-(

Now I know, I know, I should have turned the girl on her heels when she turned up unannounced... but as many leaps and bounds as you make in 'learning to be selfish' sometimes it's really hard. You can't go through all your life being 'Miss Ice Queen Super Bitch' and on this particular occasion.... I was just too tired to tell her to eff off and come back when she had rung/texted/emailed me to arrange a suitable time for both of us (yes, I do realise not everyone can work entirely round me).

What really gets on my nips is the fact that if I had a job, or a family of course people would arrange times with me... but no, I'm unemployed, I have all the time in the world! And anything I am doing is far less important than what they do, and it can't make me feel THAT bad.... Or am I just measuring everyone else by my own standards??

Also... those prats who turn up, and when you ask how they are they sniff and say they have a cold.... WELL WHY ARE YOU BRINGING IT TO ME, YOU IDIOT? YOU KNOW I'VE BEEN ON IMMUNO SUPPRESSANTS FOR 4 YEARS, YOU'VE SEEN WHAT HAPPENS WHEN I GET A COLD, YOU KNOW HOW LONG IT EFFECTS ME FOR...... WHY???????????

*sigh* I did have a little sniffle over xmas but my immune system fought it off and it never took hold. I've never felt so proud of myself for events beyond my control... I felt like a dad taking his son to the pub for the first time, and buying his first pint.... that's ma boy!!

I do love my friends, and I do love to see people. It gets very lonely when you can't get out much, and you drop out of people's consciousness but this constant people training is exhausting. I don't do much, and it's bloody hard work not doing much, so please please help me rather than hinder me... is that really too much to ask?? Why can't people understand it??

I did drop a lot of friends who just didn't get it... I worked with the friends who wanted to get it but found it hard to understand... and leant on the friends that got it straight away. It's difficult to turn your back on people, but if people are bad for you it's the best thing to do... question is can I do it again??

Sunday, December 23, 2007

Christmas wishes

Naughty But Nice
Just wanted to say Merry Christmas to you all and hope 2008 is a good year for all of you!!!!!!

Hope you have lots of fun and frolics (that's frolics CC, OK?? lol).

Friday, December 21, 2007

Quick update

As some of You may be aware I've been missing for a while. Right now I'm in a really dark place & can't see the light at the end of the tunnel. Yeah, I know it's there somewhere but for the timebeing it escapes me. So as you can imagine it's been kinda hard to "show face".

Things haven't been good with me for a few months but I was coping because normally that's what I do. Put on the brave face & pretend that it's all good!!

I won't go into details because am hurting way too much right now to even bring myself to actually admit what happened but I've taken steps too put the situation right.
Anyway think am gonna leave it here coz am not really making any sense.

I hope you all have a very Merry Christmas.

Ms xxx

Tuesday, December 18, 2007

Me & me big gob

Candy Cane

I just accidentally volunteered See See Rider to model at the MS Life fashion show.... Do you think she'll mind??

Sunday, December 16, 2007

Happy Christmas

Wednesday Addams
I promised to write and tell you all about my holiday in November, and I didn't...sorry!

So here's a quick update on what I've been up to, before I go away again.

  • the holiday in November was good - much partying, much alcohol, nice people. Excitingly, my ex was there - we had some Big Talks. He's currently seeing someone else but wants to finish with her, says he made a mistake finishing with me, yadda yadda. I've told him nothing's going to be happening while he's still with her, so if he wants to finish with her he's to get on with it. I'll be seeing him again at Christmas so he's supposed to be
    doing some hard thinking before then and I'm deciding whether I want him back anyway. Meanwhile I'm having my hair done and looking out low cut tops! I'll keep you updated, but he's a champion faffer so I suspect he won't have done anything about it.

  • My brother is getting married next July, to a woman from Vietnam. She's about my age, and has a teenage daughter. He didn't buy her on the internet ;-) He goes out there for work and met her at one of the companies he works with - she's an engineer. She's very nice, and has passed the ultimate test - my mother likes her too! They're going to have two ceremonies, one in Vietnam and one here. I don't think I'll be making it to Vietnam, but I'm looking forward to the ceremony in Portsmouth. Got to start thinking about presents!

  • I'm back at university which is tiring but good. I've presented a paper at a conference since going back, and submitted the chapter I was asked to write for a book. Quite the little high-flying academic I'm turning into! I'm also getting bits of consultancy to do from the faculty I'm studying with, which is cool. I was supposed to be doing some when I went off sick, so that's my Christmas holiday activity ("A review of policy and practice in end of life care" - fun, eh?)

  • MS-wise the news is kind of mixed. I'm much less fatigued than I was over the summer (not that that would be hard, I was sleeping about 20 hours out of every 24) but my mobility is getting worse and worse. I'm waiting to hear if I can start on Novantrone, which would hopefully slow down the progression. Interestingly though, it would turn my wee blue! (and thanks to Shop-Till-You-Drop for pointing out how this would save on Toilet Duck ;-)
Other than that, life just goes on really...I'm off on Saturday for two weeks, over Christmas and New Year, to one of the holiday centres I go to. Hope you all have a great Chrimbo and an excellent 2008!