Fatigue

[Gwenllian]

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]

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]

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]

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]

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??!! Good suggestion.

Is this what you mean?
http://www.butyoudontlooksick.com/na...poonTheory.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]

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]

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.

[capabayan]

http://www.butyoudontlooksick.com/na...poonTheory.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."