Did not want to join this club. And YES, I've read all the stickies!

[pulisa]

You're an absolute inspiration to people on this forum, kylikki.

I'm so pleased that your life is so much better now that you've thrown off the HA shackles.

[Scass]

Fab post.
Well done for all your hard work & thank you for your posts.

[kyllikki]

Thank you both. I want to say that it's largely your contributions to other (ahem, long term ) posters that have led to me realizing that a BIG step forward in my HA would be to publicly say, out loud, "I do not have..." without feeling a tide of "I might jinx it!" or "But what if?!"

Because the truth is "right now" is all we've got, and right now, I can do every single thing I want to do, daily -- that's been my reality for a full YEAR -- and that's not the reality of people with ALS/MND. So I owe it to myself (past, present, and future!) to stop living in negative fantasy land, by flat out saying "no" to the idea. So that's what led to my post.

I won't lie, I had a flare of anxiety right after I posted it -- I'm also having a stressful week overall -- and I get the heebie-jeebies just typing the "I might jinx it!" or "But what if?!" parts, because they are still SO seductive to my OCD brain. But they're no more "real" than "I might get promoted!" or "But what if I have a good hair day tomorrow?!" ...neither of which I think about on a daily basis.

Anyway, if I -- a person who literally spent hours a day for waaaay too many days staring at her tongue in the mirror during the past year, or poking at twitching muscles -- can get past HA, then I really believe a lot of other people can, too. It's big and scary but we can do big scary things. <3

[pulisa]

"Negative Fantasy Land"....A theme park for determined HA-ers but now very much past its sell-by date for you, kylikki! You've cancelled your subscription in order to make long term savings in terms of a better quality of life and freedom to actually live that life.

[NoraB]

I DO NOT have ALS/MND.

I DO have sciatica in my right leg.
I DO have seronegative/euthyroid Graves' disease.
I DO have arthritis/tendonitis in various joints.
I DO have HA.

And you ARE freakin' AWESOME!!

Well done!

[kyllikki]

You're all the very best people I've never really "met" in real life. (And that goes triple for you, dear Jojo, if you see this <3 ...)

Anyway, I really do hope others read this thread in the future and realize you can twitch like a maniac, have actual muscle problems... and not have MND/ALS.

But I can't say enough for the "life values" work my therapist encouraged, which started from the premise of: "assume you're perfectly healthy TODAY but might not be TOMORROW. What matters most, today, right now? If you could choose to do an unlimited number of anythings, what would they be?" And I had to actually make that list, as a bullseye diagram.

Then we expanded to ""assume you're perfectly healthy this YEAR but might not be NEXT YEAR. What matters most...? Then ""assume ... this DECACDE...". It was illuminating. It threw a switch for me: Why on earth aren't I doing these things?! Some of them are so easy! So enjoyable!

I started therapy in October 2021 when it became clear my HA was out of control. The values exercise opened my eyes at the end of November. Did I still fixate? Worry? Have OCD moments? Oh, yes. yes yes yes. But with every passing month I was convincing myself, slowly, to do more of what I wanted -- and it was getting easier to do -- than letting my HA run the show. I had a setback in May, and that pushed me into trying an SSRI, though I waited until July because of a revolting eye infection followed by a even more hideous sinus infection (thanks, nursery germs!) Within days of starting a child dose I felt like someone had turned the sunshine back on in life, and it was extremely easy to say "Why on earth would I waste my time on this idea?!" But I really don't think the meds would have been half as effective without the therapy work first. For one thing, they also made me viscously nauseous until I discovered they're better taken at night.

I am definitely part of this community to stay, though, because you have all helped me change my life. The other day while cleaning out a closet in search of a mostly blank notebook (too lazy to go round to the store! ) and I found one which unfortunately wasn't suitable because it had all sorts of nonsense in it including a list of diseases I was afraid of... and it was from 2009!! That's far too much of my life wasted. Do we all need to look after our health somewhat, yes. But HA turns me from a reasonable human who goes to the doctor's when something is really wrong or when routine check ups are recommended, to... well, Mr. K says I become like those people in crime dramas who have a wall of pictures tacked to corkboard and connected with bits of yarn

At some later point, I am going a symptom dump timeline here because I think it might be helpful to someone and is actually funny... But not tonight! I've better things to do!! Cheers!!

[kyllikki]

I would like to interrupt the usual worries on this sub forum to quickly say:

Still here.
Still twitching, just WAY less --
and whatever it is, it definitely wasn't/isn't ***, but rather, somethin tied to these three factors:

1. Stress and anxiety -- the more I have, the more I twitch and hyperfocus
2. Getting good sleep = less twitching, better brain health
3. Thyroid fluctuations -- for whatever reason, my body seems to want my thyroid numbers to be a bit higher than they were. I have gone back up in range, and feel MUCH better on muscle strength, twitching/buzzing, sleep quality, hunger, shakiness, anxiety, etc.

If you are reading this in a place of extreme anxiety, please re-read my whole thread and know this: The odds are *overwhelmingly* in your favor, and life CAN get much, much better once you address your HA.

All the best to you all!!