Chronic Fatigue Syndrome
Thursday, October 9th, 2014 08:07 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
debris4spikeIt is one of those problems that is not really recognised ... although it exists ina few forms, and those who suffer with it have a very hard time coping ... exhaustion, waking tired, feeling of muscle weekness, headaches, eye pain, joint pain ... etc. However, although it is not always seen as something severe it can lead to total immobility, and secondary problems due to lack of ability for personal care.
Some people have miss used the phrase, putting it is an excuse for a "sickie" .... but let me assure you it is real!
Yes, that is what the final 99% diagnosis is ... I think my doctor is not wanting to admit that is the reason I am so rough, as sadly there is no cure ... just learning to manage the symptoms.
So 10 months in, and that is what I have ... and this week has shown me what that exhaustion is like ... not getting out of bed most of Tuesday, yet still feeling exhausted come Wednesday.
Oh well, at least I know it's nothing nasty (as such) I just need to learn to rest more, and avoid stress ... HA, HA, HA
Thanks for all the support over these months ... I dare say I may have a rant at some time again in the future!
Some people have miss used the phrase, putting it is an excuse for a "sickie" .... but let me assure you it is real!
Yes, that is what the final 99% diagnosis is ... I think my doctor is not wanting to admit that is the reason I am so rough, as sadly there is no cure ... just learning to manage the symptoms.
So 10 months in, and that is what I have ... and this week has shown me what that exhaustion is like ... not getting out of bed most of Tuesday, yet still feeling exhausted come Wednesday.
Oh well, at least I know it's nothing nasty (as such) I just need to learn to rest more, and avoid stress ... HA, HA, HA
Thanks for all the support over these months ... I dare say I may have a rant at some time again in the future!
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Date: 2014-10-09 07:54 pm (UTC)no subject
Date: 2014-10-15 06:58 pm (UTC)Thanks for that link Jerusa .... not a site I knew, but found it very interesting ... and helpful.
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Date: 2014-10-09 08:08 pm (UTC)It's a crappy club, and friendly as we are, we don't particularly want new members. :p
{{{{gentle hugs}}}}
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Date: 2014-10-09 08:10 pm (UTC)(Spoons refers to the The Spoon Theory, written by a woman with Lupus.)
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Date: 2014-10-09 08:12 pm (UTC)no subject
Date: 2014-10-15 07:04 pm (UTC)no subject
Date: 2014-10-15 07:16 pm (UTC)As for the Spoon Theory, I know it's long. The general idea is, spoons represent your energy, and you only have a limited number of them to "spend" in a given day. For some reason it's a short-hand that's caught on in the chronic illness community. :)
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Date: 2014-10-20 06:47 pm (UTC)Thank you for the support.
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Date: 2014-10-15 07:03 pm (UTC)I will get back to you as well to ask about a basic theory of coping!
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Date: 2014-10-15 07:00 pm (UTC)*hugs*
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Date: 2014-10-15 07:47 pm (UTC)A basic theory of coping... hmm. Every person is different, and has to figure out their own limits. Some people can keep working, some people can't. Some people become bedridden, and others, eventually, can mostly carry on normally. Some people recover, and some don't. But here are some things I'd suggest, not as easy fixes, but ideas to consider:
1) Be kind to yourself. Pushing yourself too hard can make yourself worse. And being ill is not your fault.
2) Don't assume doctors know your body better than you do. Especially don't trust doctors who do not see CFS/ME as a physical illness, or who believe you're merely "de-conditioned." Look for doctors who listen and respect you. (Patient organizations may be able to point you in the right direction.)
3) Allow yourself to grieve and get angry if you need to. Chronic illness sucks.
4) Post-exertional malaise -- PEM -- is the CFS/ME term for feeling crappier after you've exerted yourself. There seems to be some evidence that this is a measurable phenomenon, shown in two day exercise tests, or in gene expression blood work.
In practical terms this means that you may be able to do something one day, and not the next day or the next five days. This can be frustrating to you, and confusing for your loved ones or colleagues. If they're open to learning about it, you can explain about PEM and needing to recover. (People who refuse to learn just refuse. to. learn.)
5) This one I'd been sick for a long time before I saw in somebody's blog, and it made a big difference: Instead of being angry with our bodies for "betraying us" or "failing us" by being exhausted, it can help to try to think of the fatigue as our bodies protecting us. If we try to do too much at a given stage of our illness, or on a given day, we can do ourselves lasting harm. Exhaustion (like pain) is information -- it tells us, "Stop. Rest."
I hope that was somewhat illuminating, and wasn't too much or too depressing. :)
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Date: 2014-10-16 04:59 pm (UTC)6) Don't stop living your life.
This one, I really wish someone had told me earlier. It can seem like we should focus all our efforts on getting better. People will tell us to do this. (When what they mean is, take time off from work/school, which may be a good idea depending on your health.)
Thing is, we can think we should put everything else on hold and devote ourselves to our health. We can even, on some level, feel that we don't deserve others' time, or to do anything purely for enjoyment, especially if we can't work or go to school.
But the thing is, there's no timeframe anyone can give us for getting better, or even (and I know this is hard to hear) any guarantees whatsoever that we will. So within the limits of our spoons, we just need to, as they say in Monty Python, "Get on with it."
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Date: 2014-10-16 04:59 pm (UTC)no subject
Date: 2014-10-20 06:56 pm (UTC)I am trying to live ... but as I just wrote I then tend to overdo it! That is the balance I must get sorted out.
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Date: 2014-10-20 06:54 pm (UTC)For me, I think admitting it is long-term has been a help. For the last 11 months I have been looking to get better, and then I get frustrated. Now knowing it will be some time has helped me be more accepting.
Yes, to number 3!!! I haven't really thought about it for myself, but have always told others to do that. So, now I must put words into actions .... thank you for that reminder!
I am learning about PEM the hard way! That's why I was "yukky" today. I felt well on Saturday and pottered most of the day ... spent most of yesterday in bed ... and part of today. So easy to do when you have a day feeling better!
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Date: 2014-10-09 08:32 pm (UTC)I know it's not a diagnosis you want to hear, but it looks as though there is help and support here on LJ for you, and hopefully your doctor will be supportive as well.
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Date: 2014-10-15 07:08 pm (UTC)Yes, hard not to have the exhaustion taken for laziness.
The support from LJ friends, and in fact just admitting that this is the problem means that I have already taken a small step forward in learning to cope.
*hugs* again
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Date: 2014-10-09 08:53 pm (UTC):: hugs ::
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Date: 2014-10-15 07:08 pm (UTC)The support from LJ friends, and in fact just admitting that this is the problem means that I have already taken a small step forward in learning to cope.
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Date: 2014-10-10 12:33 am (UTC)no subject
Date: 2014-10-15 07:10 pm (UTC)I have started taking Vit B ... I hadn't thought about that ... so thanks for the reminder.
*hugs*
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Date: 2014-10-10 12:32 pm (UTC)no subject
Date: 2014-10-15 07:13 pm (UTC)*hugs*
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Date: 2014-10-10 01:29 pm (UTC)no subject
Date: 2014-10-15 07:15 pm (UTC)Thank you *hugs*
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Date: 2014-10-10 08:45 pm (UTC)*hugs you tight*
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Date: 2014-10-15 07:17 pm (UTC)Thank you
*hugs* back
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Date: 2014-10-11 03:58 am (UTC)Get scented candles, or flowers, or just all of what you love. It won't help the CFS but it will make the time easier to bear. Treat yourself in any way that you like - chocolate, swimming (float), wine coolers, brie.... It doesn't make it go away either but it might make you smile for a bit. That can be a victory.
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Date: 2014-10-15 07:22 pm (UTC)Thanks for the suggestion ... spending time for me has always been hard (and money, as I have never earned much), but I am trying to accept that I need more "me" time ... and that has been a positive step ... so thanks for that support.
*hugs*
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Date: 2014-10-11 07:30 am (UTC)no subject
Date: 2014-10-15 07:24 pm (UTC)I have never been good at exercise routines anyway, so don't know whether I could get into it ... but maybe if I haven't got some real mental progress, I will look into that in the Spring.
*hugs*
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Date: 2014-10-14 09:35 pm (UTC)CFS is a mare but you will learn how to pace yourself and listen to what your body is telling you and it will get more manageable.
And there are really good online support groups out there
(((hugs))
It will be OK. honestly, it will.
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Date: 2014-10-15 07:25 pm (UTC)*hugs* you tight
I feel guilty though when I know that others are suffering with more complex problems ... *hugs* again