No new posts

bekull · Post by **bekull** » Tue May 18, 2010 4:15 pm

Haven't seen any new posts for a few days. Hope this means everybody is doing well.

SquirmingSusan · Post by **SquirmingSusan** » Tue May 18, 2010 4:53 pm

Yup, it's been quiet. I've been spending more time in the narcolepsy forums lately because that's my main issue lately. And my "real life" has been busier now that I've been getting treated and feeling better. I've been volunteering at a nursing home a couple hours a week and taking our young dog to "Canine Good Citizen" class. LOL, she can be a holy terror in that class.

And I've been taking care of my old, old dying dog. We've been loving her up lots.

And the weather is just gloriously sunny and warm off and on lately. Have been planting roses and enjoying being outside.

Neco · Post by **Neco** » Tue May 18, 2010 7:17 pm

I've been stable for over a year now, so that's my excuse..

I only post to respond with advice, or when specifically asked

Post by **Polar Bear** » Wed May 19, 2010 11:57 am

Let's hope everyone is keeping well....

But we'd still like to hear from everyone.

Post by **badnights** » Sun May 23, 2010 10:51 pm

I'm alternating between panic and hope, but I'm keeping it largely to myself. The only way I can avoid despair is not look it in the face, pretend it's not there.

I was thinking the other day, this has been the worst year of my life, and my life has had some very trying years. I am doomed to a life of RLS beating up on my drugs. I have to take drugs with a street value and I need need need to be close to a doctor who understands RLS, which complicates travel and life in general and my plans to work overseas. My back pain and sciatica are unbearable and I can't sit down to work, I have to stand. I am lonely. I can't finish my thesis and I can't even work a full day, so I can't work in the bush which is what I went back to school for - lord god, there is no peace in my soul like when I'm in the bush. I can't even dream about working overseas now. Much of who I am derived from my intellectual energy, which has largely vanished.

But the same year - this very same year just passed - has also been the best year of my life. How is this possible? I don't know how, I just know that's the way it is. I played hockey 2-3 nights a week without getting frustrtated at my lack of skill, I just outright enjoyed it. I discovered that I have a talent for playing in net and met some cool people on my new broomball team. I got an award for hockey - I think maybe because of my enthusiasm; but someone must like me or that wouldn't have happened; it was such a surprise and it felt so good. I am physically in good shape except for all the diseases. I started buying nice clothes and I feel good wearing them. I'm good friends with my two children. I've spent a lot of time meditating, doing breathing exercises, doing yoga, playing hockey. These things take me away from the greif and despair. And I can do these things! I am not crippled (except when the back pain gets bad lol), I can move, I have my body. My intellect may be shot, but I can still run and skate and move. I have a place to live and - for the next while at least - an income.

I know this peace and gratitude come somehow from the terrible wreck RLS has made of my life. I can't put my finger on the connection, I can't articulate it. The worst year of my life, and the best; the very same year.

SquirmingSusan · Post by **SquirmingSusan** » Mon May 24, 2010 2:00 am

Thanks for sharing that, Beth. I know I've been through a similar transformation as everything I thought was important was stripped away by the struggle to just keep putting one foot in front of the other, day after day and year after year. There's just so much more to us than we think.

Post by **ViewsAskew** » Mon May 24, 2010 3:22 am

I was just talking about this with my dearest friend; she has lupus and has had a rough 5 years that included a bout with depression. We were talking about how you accept what is and redefine what your life is based on what you can do.

I used to be sure that I could do pretty much anything that interested me. Now, as Beth said, I'm lucky if I can even remember what interests me let alone learn about it, remember it, and then do it.

Yet, I'm still here. And, in many ways, I have a good life. It's just different than the one I had prior. And is probably different than the one I'll have later.

The acceptance part is definitely the hardest for me. Last week my husband said we should probably drop the YMCA gym membership because neither of us use it. He has odd muscle spasms (myofascial trigger points) and any time he goes he gets incapacitated and I'm rarely up before noon and spend my days frantically trying to get some work done for my business. By the time I could go, it's closed (midnight, 1 AM, lol).

I told him it was cheap because it offered me hope. Having it means that someday my life will be 'normal' again, that I will be able to get real sleep and get up at a reasonable hour and participate in things other people do.

But, is it hope or is it denial? It's a hard thing to tell apart at times.

Post by **badnights** » Mon May 24, 2010 3:50 am

denial is a form of hope. Until you give up, that is; then you look back and call it denial. While you actually hope to be able to use it, keep the membership! Things change so fast.

Wayne · Post by **Wayne** » Sun Jun 06, 2010 6:58 pm

Nothing new for me. Still getting by on gabapentin and xanax.

I stop by a couple times a week though, hoping someone has found that silver bullet

Post by **ViewsAskew** » Sun Jun 06, 2010 7:09 pm

Wayne wrote:
I stop by a couple times a week though, hoping someone has found that silver bullet

Now, won't that be a day of celebration! I honestly can't imagine what it would feel like to sleep without issue, without drugs that alter some part of you, to feel rested, to be highly functional every day.....