Tuesday, January 23, 2007

Dehydration and cfs

After yesterdays post I left this response on the bury/ bolton support group message board :
It has made me wonder though - i thought the dehydration thing was a symptom.. what if it's actually a contributing factor?
I was just talking to stef about it and he says i'm actually better when i'm drinking loads - I know when I was in Italy I handled everything fine - and we walked for MILES over there! but I was drinking water practically constantly all day every day because of the heat.

I know I was amazed at how well I coped, but I did have a mini relapse when I got back - but by then I'd gone back to my normal 'drink when I notice i'm thristy' routine - which is definitely nowhere near the rda..
It's just, ever since I first got this thing I'm always thirsty - so much so it becomes a background thing that you ignore until you can't anymore - and my lips are constantly dry and flaking, i get mouth ulcers all the time and.. well i'm just dry and run down even without the cfs stuff.
and Louise swiftly responded thusly:
There could be something in what you say as Dr David Bell, chair of the CFS advisory committee in the US, says you can reverse the symptoms of ME, but it only lasts 6 weeks, by giving an ME sufferer saline infusions. Also, there is research saying people with ME have low blood volume and water and salt increase blood volume. Drinking enough water is definitely essential for people with ME considering the research that points that way.
Which then made me want to know more.
This article gives quite a thorough accounting of the ways in which dehydration could be responsible for many of the symptoms of cfs - and I have to agree with it because those symptoms lessoned when I was in Italy and drinking more than my body weight in water - I had no aches and I didn't suffer any more than the people I was with after all that walking.

Now, the website of Dr David s Bell gives an account of the saline infusions Louise mentioned, I know when I was in hospital and they had me on a drip that was simply saline, I felt 'fresher' my lips plumped out a bit and lost the dry flakiness that I always seem to have these days - my eyes also lost the 'gumminess' I always have, even when they're not dry they feel 'tacky' as though they're drying out..

Still, it's unlikely we'll be offered anything like a weekly/ daily saline infusion in the uk so it's pointless going down this road. But I'm still going to try and up my water intake (she says.. )

I've just realised i've not had a drink yet today and it's already 1.20pm I need to set up a reminder system on my phone, if I drink a pint every hour it'll be approaching my italy intake and that's one way of determining the difference.

Monday, January 22, 2007

Isn't that odd..

The times have thoroughly redeemed themselves after most of us wrote in to them about their take on CFS.

It's kinda nice to think that perhaps we did have something to do with that article being written, you never know, maybe we did.

It's funny though, reading the part at the end of the article about a personal experience has led me to realise something.. I too have dry itchy eyes just before a bad bout, I thought it was just that dehydration was a result of the cfs kicking in badly - but I have to wonder.. Do I get a really bad time of it when I'm more dehydrated? is dehydration a cause rather than a symptom? i fely great in Italy, but I was drinking a hell of a lot more water over there than I was here and I was taking an afternoon nap every day..

Who knows? I may have to ask my specialist - assuming I ever get to see him again, I'm thinking of asking my doc if he'll refer me to the clinic all the bury/ bolton lot go to - i'm guessing he won't be able to because of cachement areas etc but it's worth a try..

Thursday, January 11, 2007

And a rant

I've already vented my spleen over here
feel free to go and have a looksee and express your disgust alongside mine.

Wednesday, January 10, 2007

Aaaaaaaaaand.. crash.

Yup, today made up for whatever wakefulness I've had - I got out of bed at some stupid time this morning because I just couldn't get comfortable and gave up lying in bed tossing and turning and slept on the couch, at about 12ish Stef came in and tried to get me to move; wasn't happening.
I finally managed to get up at 3.15pm, had a shower and basically monged about since then - can't wash my hair though *sniff* it's manky as sin but I'm not allowed to get water in my ears and I've not got any cotton wool yet to plug them with - it's driving me nuts!

On the plus side - while I may be physically whacked today, I seem to be mostly there on the mental front.
Makes a nice change lately.

If only the painkillers were working *sniff*

That aside, I need to rest, I've got another band rehearsal tomorrow night that I need to be fit for - it seems we're doing our first gig on march 3rd and so they've upped the tempo on me to 2 a week (and lets face it, we need the rehearsals!)
I'm just a tad worried about how this will affect me though, after just 4 songs last night the shakes kicked in and I ended up sat on a chair for the rest of the practice session - this does not bode well for a kick ass rock show and it really doesn't bode well for the next month or so, I'll pace it of course, but it means instead of losing 2 days to resting for rehearsals I'm now losing 4 so apart from mondays that's my week sewn up (I don't like to go out at weekends if I can help it, I don't handle crowds too well) and then there's the stress of the performance itself..

I get nervous enough about going on stage when I don't have the image of a very public crash at the back of my mind - I'm thinking a few calming techniques are needed before then. That and a back up singer.

To make matters worse, they're talking about buying a new mixer for the band, i hate that I'm not contributing my share - they pay for the rehearsal space and any drinks, I get chauffered to and from the place and now they're buying more equipment. I'm such a scrounger!

And no sign of a response to my DLA claim yet.
*sigh*

I need to start selling things soon, it's my only financial recourse.

Tuesday, January 09, 2007

catching up

So last night I think i maybe got an hours kip, i'm buzzing like a buzzy thing and having trouble..
doing whatever, can't find the words i need and it's pissing me off.

To pinch a paragraph from my main blog:
someone’s flicked the power switch again and i’m on full pelt, adrenaline overload - my system is buzzing like a buzzy thing and it’s not good - it means either later today or for most of tomorrow I will crash, hopefully not today as I have a doctors appointment at 4.25 and i’d like to make this one - the last one never happened because I couldn’t get out of bed.

There was newspaper snippet passed round the bury/bolton support boards on sunday and a few of us have responded in e-letter form in the vain hope someone takes notice, I won't hold my breath - but it'll be interesting to see if something is said.

I need to try and focus, can't go to the docs like this - how can I tell him what I need to if i can't figure out what it is I need to say? gah! I hate this thing sometimes.. actually I hate this thing all the time, i just try not to think about it as often as possible, that's probably why i'm on 'hyper' it stresses me out - especially with regards finances, I still haven't contacted the social about the amount their raping from me each fortnight, i just can't focus enough to communicate with someone who doesn't know me - i sound like a complete idiot on the phone, maybe i'm more sensitive about it because i used to work in a call center and i know the mindset of the operators, whatever the cause i hate to sound like a tit.

Friday, January 05, 2007

Ear infection? Here, spray this.

I went to see Mr Willatts at the ENT clinic today, apparantly I have an eczma like substance in my ears. I've never had eczma before - what a horrible place to get it.

Anyhow, I've been given a spray to use three times daily and instructions to give my GP a copy of the prescription as I'll need to keep it up for a while *sigh* I wouldn't mind but it smells like photographic developing fluid and it's uncomfortable to say the least, I'm not supposed to get water in my ears and then this spray fills me up and leaks down my neck *shudders* and it sort of burns - not in an uncomfortable way, more like it's stimulating my inner heating system, still, as long as it gets rid eh?!.
*grin* just looked up the active ingredients in the spray - apparantly it's used for difficult ear infections especially in dogs! LOL
That's tickled me that has. Ah well, maybe in my next life I can be a cat or dog - they get better medical care than humans do!

Tuesday, January 02, 2007

new year, more sleep

On the plus side I've only crashed twice over the Christmas period - on the downside both times were in public.

The first one wasn't so bad, we were in church Christmas morning and I just sat slumped on the pew with Stef holding me up before half carrying me out to the car at the end of the service.
Last night was worse.

I'm not sure what brought it on - I'm only guessing when I blame the speciality tea I was drinking. It felt like I'd had an espresso, the jumpiness, the sensation of something bubbling just under my skin (not a pleasant sensation I assure you) then I crashed totally - it's like when a pc is hit by a power surge, there's a split second of all system functions going nuts then it just shuts off - that was me.
I was the dreaded blue screen of death last night.

It didn't help we were visiting people who lived in a flat at the top of 3-4 flights of stairs, it took 2 people to carry me down them after Stef had put my shoes and coat on, another person trailing behind carrying my belongings, then being stuffed into the car only to repeat the process at the other end.

What makes it worse is that I get so frustrated at not being able to move or help myself that I start crying - then I get embarrassed at being so pitiful and can't stop crying, which makes me feel even more embarrassed.

I've had to cancel going to visit my best friend today because I'm just too wiped out, I've not seen her for months and was really looking forward to catching up and now I can't. I hate this fucking illness.