Thursday, December 21, 2006

Here I go again... *cue guitar*

Got up at around 11am after another night of nightmares.. Again I couldn't remember them - it's a crying shame that, it means something is obviously bugging me but I can't think what it is.

Perhaps I'm subconciously stressing about the DLA thing and my financial situation, it is the most likely candidate after all. Or perhaps it's because I'm getting broody again, I'm starting to feel as though my chances of motherhood are fast slipping away, that's the part of me that even thinks I deserve to have kids anyhow (but we wont go there now will we?) Or maybe I'm just worrying about this illness again.

Meh! either way, I'm not sleeping too well and I've given up any pretence at pacing until the holiday madness is over - i'm back on the boom and bust regime, it's not good but it's at least productive (when I'm not bust) sadly it also means my sleep cycle is buggared again - look at the time - proof positive since I should've been in bed at least an hour ago - yet I'm wide awake.

The guys and gals on the support group message boards have been keeping me entertained and mildly disgusted chatting about this
I wouldn't mind but I hate dark chocolate *sigh* why can it never be a nice bar of dairy milk eh?!

I've neglected a specific symptom round up for a while - not good since this blog is supposedly my way of tracking patterns but there ya go - my memory sucks, so here's an up to date 'as of this moment' one:
  • Fatigue
  • General acheyness
  • Intermittant tinnitus
  • Intermittant verbal dyslexia
  • almost constant dehydration
  • intermittant dizziness
  • sore throat
  • mouth ulcers
  • problems with bowel movements (A.G to anyone in the know *blush*)
At least this time depression isn't in there - I'm generally handling things quite well (please disregard the nightmares, I have no control over them)
Actually - I could just be having nightmares because of the idiot downstairs and his 4am Dolly parton parties (they must be parties, why else play her greatest hits at full volume and attempt to sing along at the top of your voice? I wouldn't mind but the guy really can't sing)
At least he seems to have gotten rid of the dog, it's mournful howling all day was a little much on top of his other anti social and inconsiderate behaviour!

Monday, December 18, 2006

Free money

YEY - I got paid!

ok so it was only £13 but it's £13 I didn't have before.
Check it out:

Tuesday, December 12, 2006

All praise the mighty VegEPA!

I may be in the middle of a relapse, but I'm handling it a hell of a lot better than at any time previously. I think it has a lot to do with the VegEPA supplements.

Since I started taking them my mood swings have leveled off and Stef reckons my cognitive abilities have increased - until I became ill again and fell into this mini hole I hadn't really credited the latter observation, but now I do.
This is why it's easier to bear this time around, I can still think and communicate, I'm not just a worn out vegetable.

Yes, I'm still not at the cognitive level I would class as 'normal' for me, but it's a hell of a lot better than the level I was at when I first started dealing with this 'wasting disease'. I can write a legible sentence, a paragraph doesn't take me an hour to write and I'm not constantly referring back to my well thumbed thesaurus in an attempt to explain what I mean coherently when writing a blog post.

It's good to have the use of your faculties again, even if it's not quite the range of use you may have had previously - but then we all lose a little as we get older don't we? It's the nature of things.

I still prefer communicating via email because I can take my time to figure out what it is I'm trying to say, when I talk on the phone or in person I stumble and get flustered and end up sounding like a moron - which stresses me out; I'm not an idiot, I'm just ill.

I think I know what it's like for the lip reading deaf now - for them a conversation can only take place if they can see the other persons face and if during a chat the other person looks away mid sentence, the deaf person will miss some of what they're saying and possibly lose the context of what's being said - this is how misunderstandings arise.
It's a similar thing for me, only instead of being deaf I have lapses of concentration and when that happens it's as though I've lost sight of their face and miss half of the conversation, it's not that I'm not interested or I'm not listening, it's like I 'forget' to hear them.
When I'm like this it's very tiring to talk to people because I'm having to really work at following what's going on - it also means I'm filling in the gaps myself and so the conversation I remember having sometimes bears no resemblance to the conversation other people think we're having.

It's confusing and frustrating to say the least.
I can handle being tired now, It's taken me three years to stop beating up on myself about it. The aches are back, my throat is an on off hurty thing, but I'm not letting the tears trickle down my cheek as I languish in a pit of self pity, I have my mind and can think of the future.

This is why I've decided to start trying to sell my beaded creations on eBay.
I have problems concentrating on anything for long periods of time - the only thing that absorbs me enough is web design, but since I can't always focus on a computer screen for long periods due to the headaches it engenders, having enough concentration is not really a problem there. It'’s a challenge but I think I can handle it - I just have to try and curb my natural impatience and work within the limitations imposed by my illness.

Here'’s how I'd like it to work:

  1. Remodel my site from CSS css and html upwards, make it so that my blog and the cfs site fit into it more naturally
  2. Create alternate style sheets (for printing purpos, pda’s etc)
  3. Create an image gallery for my beadwork (to link to eBay)
  4. sort out a shopping cart and secure payment options (more hosting scripts to play with.. oh joy)
  5. Take over the world

Ok, maybe #5 is a little on the overly ambitious side, but it'’d be nice if I could actually garner an income again from something other than benefits. Because of my concentration difficulties and the headaches etc, perhaps web design is another dead end for the moment, but I'm still hopeful that something will come out of this illness apart from a lot of time spent in bed or on the couch.

I hate feeling useless.

Saturday, December 09, 2006

This week oive been mostly..


Yup, the CFS has reared it’s ugly little head and attempted to steal my life again - this time around though I haven’t crumpled into a weeping wreck at the unfairness of it all. Stef took me into town on wednesday so I could meet up with Dawn, he’s a good lad really, there should be more about like him!

I’ve cancelled so many meetups with Dawn through this illness that I’m amazed she still bothers with me so I really didn’t want to miss this one but I just couldn’t face the bus journey - even though I’d been in bed for a good 4 hours in an attempt to gather some energy for the outing. Anyhow, Stef drove me in despite it being 5pm and the journey back was likely to be murder for him, I got there not long after she did and we went in to watch a cracking film.

I definitely recommend ‘The Holiday’ to anyone who likes a film that makes you laugh, cry and wince a little at the outright stupidity of some people..

Anyhow, I made it home and basically collapsed, but it was worth it. I do love a good film, and seeing Dawn is always fun.

I've also decided that I'm going to start beading in earnest and attempt to sell my creations on Ebay. I figure if I can at least make back the amount I spend on making the stuff I'm ahead of the game, at present I make things and then give them away - I can't afford to do that anymore.

I have the webspace, I have the knowledge so there's no reason why I can't take photographs of everything I make and store my 'catalogue' online and allow people to pick and choose what they want from me, I can even make 'em to order should it be required - beading is something I can do when I'm too tired to do anything else and it doesn't matter if I leave mid stitch to crash, I know I can carry on when I wake up.

Speaking of which.. I need to go crash, we're supposed to be going out for a curry with friends tonight, I'd really like to not have to beg off again - it's been so long since I had an opportunity to get dressed up and look a bit more glam than a used up dishrag!

Tuesday, December 05, 2006

Relapse city, population: ME.

that's right people, I'm dead as a dodo again. no energy, no enthusiasm.. Quite frankly I couldn't care less about anything right now - just as well someone else is coming to sort out my dla and finances or i'd sit in bed and starve (if stef would let me)
speaking of bed..