Flash Bristow ([info]techiebabe) wrote,
@ 2008-09-21 18:31:00
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I must have a star on my door
Thanks for the emails from those of you wondering how I am.

I'm a bit of a zombie to be honest. Lots of work on in the start of the week, then on Thursday and Friday I took ill and spent a lot of time in bed (albeit with my laptop when I was awake) - with an upset stomach, fatigue and I kept flicking from hot to cold. Not fun. I didn't eat much but I did drink lemonade and juice. My neighbour rang to see how I was, and brought me round a couple of bananas. That was appreciated.

I thought I'd catch up on work over the weekend, but all I've really caught up is sleep. Yesterday I slept until about half five (in the afternoon), and then again from around midnight. I did eat a proper meal though (the first since Wednesday). Today I got up to feed the dog and went back to bed... until Mike woke me at quarter to four.

I've been awake for nearly two hours now and I feel like a complete zombie. Still I need to catch up on work. I hate that part of being self-employed, the feeling that I need to be doing stuff. Hope I feel more awake tomorrow.

During all this illness and sleep I've not been keeping up with my regular meds (pregabalin) - I feel like they don't do a lot because I still ache and hurt a lot of the time, but I really noticed their absence over the weekend, my knee hurt terribly last night. I'm catching up with the pills and slowly losing the pains.

I feel like a crumpled garment. I just need someone to pick me up by the head and shake the aches out of me.

I wonder if all this sleep is because my body's putting energy into healing my finger. The damaged bit's much blacker now but still warm and attached, so I guess it's ok.

Pllleeeeease... let me slleeeeeeeep...

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[info]wibble_puppy
2008-09-21 05:32 pm UTC (link)
*hugs*

so sorry you have been all-over-poorly on top of your finger traumas. Very good to hear the finger is bearing up well, though.

Do you find that your mood suffers when you miss your pregabalin? I have to be really really careful not to miss mine.

*makes you a nice bowl of chicken soup* feel lots better soon

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[info]techiebabe
2008-09-21 05:40 pm UTC (link)
Aw, thanks! (I'm veggie, though ;-)

I haven't really noticed any mood difference with pregabalin (hmm, wonder if my husband has!) - how much do you take? I'm on 600mg a day, but it's in 150mg doses as I can't really tolerate the 300 very well. So I take it 4 times a day. Until now it's been "as and when", in a "oh, I suppose it's due about now, I'll take one" but last week when I was on antibiotics - also 4 times a day - I made a point to remember my meds. I hope I'll remember to stick to 10am, 2pm, 6pm and 10pm most days now - I keep it in the car, in my desk, by the bed...

Do you find you end up keeping it everywhere in case you miss a dose too? I seem to turn drawers into medicine cabinets.

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[info]wibble_puppy
2008-09-21 05:47 pm UTC (link)
ah *makes you a nice bowl of hot miso*

I'm down from 600 to *thinks* [150+225=]375mg, which I take in two doses, timed to optimise its help with sleep.

Yeah it's the one drug I do take extra of everywhere I go! Missed it once and two hours later dipped into a serious depressive episode. On the AIR the_magician had instructions to remind me religiously at 12 and 5. He's very good at looking after people :)

I find i have to juggle its painkilling properties with the tendency to make you unreasonably hungry and therefore gain weight.

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[info]techiebabe
2008-09-21 05:52 pm UTC (link)
Well I tried amitriptyline first and that made me sleep *forever* and gain weight so I was put on pregabalin.

I don't feel *as* hungry, but I probably am overeating because of it - given that I am not very active so don't need many calories.

But as I've found out it does help, so I'm happy to take it.

I'll watch out for the depression - I do get black days but not very often and I just take it easy on myself when they happen.

I thought amitripyline was more likely to do that - being an anti-depressant - as pregabalin's an anti-epileptic?

(Looks like I need to learn more / be more wary.)

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[info]wibble_puppy
2008-09-21 06:15 pm UTC (link)
I'm on amitriptyline as well, was put on it by my GP as soon as he suspected M.E., but it's a sub-anti-depressive dose. The effective anti-depressive dose is 50mg and I'm on 20. Having had depression for 10 years and successfully defeated it (bar the odd couple of hours every six months or so) it was reassuring to be told that what I had was NOT depression!

It can be good that the ami makes you sleep - I don't think it has any effect on me so I'm cutting it out gradually, but if it does make you sleep and if you can time the dose successfully then it can be v helpful in that way (as long as you can wake up again in the mornings lol)

Yeah I thought pregabalin was an anti-epileptic. but it does seem to have these other effects as well - on sleep, eating, and mood. I LOVE the feeling it gave me when I first started on it - fabulous to feel my body relaxing and my mood lifting. Absolutely brilliant for the fibro pain, too, when nothing else could touch it.

Are we drug bores?

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[info]techiebabe
2008-09-21 09:39 pm UTC (link)
Amitriptyline did help but it just made me sleep. Not even normal sleep but zonk, sleep through alarms, can't remember anything when I wake. I usually get up to wee, dream a lot, etc. It was scary to be honest! I took 10mg and stepped up to 50 over 5 weeks, and it did help the pain (I've got Ehlers-Danlos Syndrome Type 3 / Hypermobility Syndrome which I know is often linked to fibro and ME, somehow...) but I couldn't take the sleeping and then the eating. So I took myself off - no bad effects. The pregabalin is really helping but I still have lots of pain. It's hard to explain.

When I started the amitriptyline, every time I stepped it up it removed a layer of pain but exposed another underneath that I didn't know was there. It was like an onion! Pregabalin was similar. But there's still plenty of ouches left underneath.

Anyway - my consultant thought that as the amitriptyline helped the pain but I didn't get on with it, it showed that treating neuropathic pain was the way to go - hence trying pregabalin. I am surprised not to get more side effects (usually I get anything going) - the amitriptyline affected me even on 10mg.

I told a friend with very bad fibro about pregabalin, and I think her doc put her on gabapentin instead. But I've heard really good things about pregabalin for fibro pain (and EDS pain). And it does seem to work for me. Although it's a bugger to get hold of cos only Pfizer make it (it's not available generically) so my local chemist has to order it specially. I need to make sure I get my repeats early enough...

I don't think we are drug bores! There's far more of this on Ouch website, and I recently asked a friend what she was on... the list was huge... made me feel good about myself not being too bad, relatively!

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[info]wibble_puppy
2008-09-22 10:16 am UTC (link)
ha ha do you find on the ouch website that some people engage in a subtle one-up-manship about how many different drugs they are on? lol ;) (I haven't used that website myself... just remembering some people with M.E. and/or E.D.S. that I know)

I was told that gabapentin was due to go out of copyright or whatever they call it in the drug world, meaning that any company could make it, and that therefore Pfizer decided to update it etc, and that pregabalin is the result. It's supposedly a better drug that gabapentin, but apparently many GPs are reluctant to prescribe it because it is very expensive. My own GP just said, well, yes, it is going to blow the budget a bit; but I consider it to be worthwhile because the clinical testing is borne out by my own experience that it really is effective for fibro and other neurological pain. Hurrah!

Like you, I wouldn't say the pregabalin has eradicated the pain. Today's quite bad. But it has definitely taken a massive edge off it.

Relating to what you say on the self-employed front, btw. I can't work, or not reliably anyway, just yet, but Griff is a self-employed "historical consultant and stunt performer", and although he has the constitution of an ox does occasionally have to work through bad health times, eg when he broke his feet, and during a horrible four-week-long virus this summer. It's very grim to see him having to soldier on. It's funny that some people think that going self-employed is some sort of easy option.

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[info]techiebabe
2008-09-22 01:31 pm UTC (link)
I think on Ouch people try very hard not to say their impairment is worse than anyone else's... but there are certain threads where people all pile in, there are loads of EDS people on there. "Me! I need to be heard! Me! I have it too!" etc.

What you've said about gabapentin / pregabalin makes sense. As for the costings, my consultant put me on pregabalin and now my GPs have to provide it on repeat. I don't know who pays for that, but tough. It helps! I want more! :)

Yeah, self-employed.. well it has some benefits. I can work at home and don't have to commute. I can have a doggie as a result. But it's hard to manage cashflow (most of my work is word of mouth and I dont know what I'll get when!) and if I'm ill then yes, I feel pressure to get back to it asap. I could pay someone to do the grunt work but I'd get less of a cut. And I earn far less than when I was on a salary in the city. I have a wonderful supportive husband, and he earns enough that I can work like this, but I do feel guilty that all the weight's on him.

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[info]tasseltip
2008-09-23 11:44 am UTC (link)
I _so_ understand the need to jump up and down (metaphorically) to be heard. Even if there is absolutely no desire to imply you have anything *worse* than anyone else, the chance to be in a place where you are much less likely to be judged because of your disability, discriminated against because of it or even excluded based on it, well that's an invitation for quite a bit of rather enthusiastic self-expression.

It's like when I spend time in RL with a couple of friends who have similarish conditions to me, sometimes we talk about it just because we understand and we can. And we don't have to explain (mostly*). (Sometimes we don't because we also have other stuff that happens in our lives... like work and family and bands and ponies and yes, doggies!).


*Some people I know are still getting the hang of people having pain but not necessarily looking like it.

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[info]techiebabe
2008-09-22 01:35 pm UTC (link)
Oh, just remembered - when I started pregabalin I did get euphoria a little while after taking.

Sadly that went when I stepped it up.

But I take your point about mood now that I recall it...

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[info]tasseltip
2008-09-22 02:50 am UTC (link)
Not drug bores! On the contrary, it's interesting to hear how such things work on a detailed sort of basis.

It's often good to have somewhere that one _can_ discuss such things without it being socially inappropriate. And I'm finding both of your experiences interesting, for future reference and so on.

Take it easy, Flash...

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[info]wibble_puppy
2008-09-22 10:35 am UTC (link)
thanks for that, tasseltip.

Not well enough to read more than a couple of pages of your journal archive, so haven't worked out whether this would be appropriate for you, but there's a really outstanding online community at www.brainfog.org. It's designed for people with ME/CFS/fibromyalgia but welcomes people with related or similar conditions.

I haven't been around on the forum much for ages now because I've felt it best for me to try and do more "real-world" things, but I'm still a member and still pop in to see what my mates there are up to. They are a really good bunch - funny and supportive and down-to-earth. It's designed to be like an online coffee shop - a place for jokes and positivity and interesting conversation.

I like your journal very much, may I add you to my flist?

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[info]techiebabe
2008-09-22 01:27 pm UTC (link)
If that's aimed at me - feel free to add! And if aimed at Tasseltip I'm sure she wouldn't mind new friends :)

I will have a look at brainfog sometime (when I'm not catching up on work!)

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[info]wibble_puppy
2008-09-22 01:32 pm UTC (link)
Aimed at tasseltip, I have already got you on my flist, hope you don't mind!

Tell the guys on Brainfog that I sent you ;)

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[info]tasseltip
2008-09-23 11:36 am UTC (link)
Tasseltip is also happy about this :) Go for it... And Tasseltip likes the look of the re-enactment website. Clearly a few similar interests there.

Will respond in a bit more detail later but very tired and sore tonight. It's called Out All Day.

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[info]wibble_puppy
2008-09-23 12:25 pm UTC (link)
Cool - thanks for replying :)

hope you feel a bit better today xx

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