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Gwenllian
05-20-2008, 04:03 AM
I'm technically in remission at the moment (yay!), but I still get overwhelming tiredness. Does anyone else get this? Do the symptoms of WG ever totally go away?x

Margrete
05-20-2008, 04:16 AM
Hi Gwenllian! Happy to hear about your remission!

The doctors said I was in a remission too, but I'm not sure... cos I just swithed to metho and some other antibiotics because of my joints. not sure what defines a remission...?? but, yes, the tiredness is terrible. I sleep 12-14 hours every night (day) and I go through the day without actually doing anything, and still I feel like I've run the marathon or something.
I hope it will get better as everything stabilizes more.

andrew
05-20-2008, 05:42 AM
I'm technically in remission at the moment (yay!), but I still get overwhelming tiredness. Does anyone else get this? Do the symptoms of WG ever totally go away?x

That's a common thing unfortunately. Perhaps in time it'll get better. It may also be your body telling you that there's now a 'new normal'. I suffered the same thing for at least 12 months after diagnosis. Eventually though, it came good as I hope that it will with you.

How's your diet? That can have an effect on tiredness as well.

Twice
05-20-2008, 06:51 AM
The tiredness can sometimes feel overwhelming, and although I'm in a quiet time (and have been for some time) I still get extremely tired and I'm not very good at pacing myself. Anyone heard of Spoon Theory?

(Oh, and the meds have an effect, I'm sure)

andrew
05-20-2008, 07:13 AM
The tiredness can sometimes feel overwhelming, and although I'm in a quiet time (and have been for some time) I still get extremely tired and I'm not very good at pacing myself. Anyone heard of Spoon Theory?

(Oh, and the meds have an effect, I'm sure)

Duh! The meds!!! Why didn't I think of that??!! :D Good suggestion.

Is this what you mean?
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

I had a quick skim of it and looks interesting. Will need to read it later because I have to get to work :-)

Talk soon...

capabayan
05-20-2008, 08:26 AM
Wow, that Spoon Theory is amazingly accurate!! People who don't have long-term illnesses just don't understand having to say no to doing a meal with someone or having to skip mid-week prayer meeting at church because you'll be too tired to drive home. It's so hard, because when they do see you, you "look" healthy - if you've counted your spoons beforehand - so they tend to forget what you're struggling with every single day.

Twice
05-20-2008, 10:31 AM
Yeah, I get caught out even after years and years: I just get too over exuberant when I feel well and - duh! - end up falling flat on my face. Having to apologise to my best friend after helping her prepare food for her party and falling asleep in a corner at 7.30pm or trying to explain that I don't want to go shopping in a particular town (where I'd love to go shopping) because it's built on a hill.

Then again, in the big scheme of things, a little bit of fatigue is a small price to pay.

andrew
05-20-2008, 12:40 PM
Then again, in the big scheme of things, a little bit of fatigue is a small price to pay.

Yeah I suppose it's all a matter of perspective.

I too have to keep a lid on what I commit myself to. I tend to take on a whole bunch of stuff and then fall in a heap, which makes me feel worse because I don't live up to what I committed to. One day I guess I'll learn the lesson :D

debbie
06-20-2008, 01:46 PM
Great article and very true. I was diagnosed with Rheumatoid Arthritis when I 12 years (I am 46 now). That is one thing that I have learned over the years is how to pace myself, as with any illness there is always fatigue and limitations that only you know and other don't understand. This has helped me tremendously when I was diagnosed with WG.

Terry
09-22-2008, 11:24 AM
Wow that spoon thing was so right on! I'm at the stage where I haven't yet figured out exactly how much to pace myself. More often than not, if I have a few moments of down time, I'm crashed.

andrew
09-22-2008, 06:59 PM
Mmmmmmyeah. I keep saying yes to things when I should be saying no and consequently burn myself out. I've been concious of this these last several weeks and I think I've managed well so far.

I have leave due in late October so I'm looking forward to doing n-o-t-h-i-n-g :D

Terry
09-24-2008, 07:46 AM
Andrew, I feel like my fatigue transcends sleep. In other words, I can't get relief from sleep. It will take some serious down time and healing for me to get to the point where I don't crave a nap in the middle of the day.

andrew
09-24-2008, 05:13 PM
I hear you :-)

I've noticed though, that what I eat has a direct relationship to how I feel. I haven't noticed this until I got sick.

I'm eating more and more free range/organic stuff these days and when I stick to it, I feel great. Even when I stick to 'normal' good food I'm fine. As soon as I deviate and go for the junk, that's when I crash. It's almost immediate. Totally bizarre and not something I've experienced before. I've really got to pay attention to what I'm eating these days.

So, I guess I'm asking how's your diet? Changing it around might help with how you feel. Granted, it might not get you on Dancing With the Stars but any improvement is an improvement :-)

Terry
09-25-2008, 02:56 AM
I try to stick to free range/organic as much as possible. I avoid sugar, grains, starches - anything that will give me a blood sugar spike. My nutritionist wants me to give up dairy, but I still have cream in my coffee in the morning. :) I have been getting some blended mocha drinks from a local coffee place that I probably should stop because I just don't know what is in it. I have an autoimmune disease of the thyroid (Hashimoto's), fibromyalgia, and a third un-named autoimmune disease where my immune system attacks itself. :rolleyes: Anyway, the way I eat is supposed to help all of those things - the operative word here being "supposed". Because of the the Hashimoto's, I can't have soy products unless it's fermented (soy sauce).

capabayan
10-07-2008, 02:56 AM
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf


Well I finally got around to sending this to a few family and friends... and the response was amazing! Even my husband, who I thought pretty much understood how I felt, gained insight from it and has become more understanding (if that's possible!) since reading it. It has really helped with people not expecting me to do quite as much or be out of the house so often too. I would encourage all of you to send it out to anyone who doesn't seem to understand your bout with WG as well as anyone close to you, even those who seem to "get it."