Gingergrrl
Senior Member
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@Mary will email you later to not sidetrack this thread but love your idea!
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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That would be lovely.Janet - what a kind offer! One of my sons and his family live in your neck of the woods - Woodside - I get up there about once a year. Maybe my next visit (I don't know when it will be) I could sort out a short visit with you and Ron?
I'm sure we can manage more than 5 min!Oooh... @Mary, can I come with you LOL. Don't you love how we are all inviting ourselves over? I am kidding (sort of ) but maybe I could coordinate my next trip to OMI (no idea when this will be) with when you see your son (and we promise to only stay for five minutes to say hello to @Rose49 and then quickly leave them in peace LOL).
I'm sure we can manage more than 5 min!
I spoke to a friend of yours at MillionsMissing and you sounded really bad. So whereas others are thinking "I didn't know you were so severe", I'm thinking "wow you've improved a lot for this to be a possibility "since August when I could not even roll over in bed and was spoonfed
Just let me know when you'll be in town! We'll work out something if possible. We love meeting PWME! Especially PR buddies!Okay... ten minutes LOL. Actually @Mary and I would be thrilled to visit with you for hours but do not want to invite ourselves or overstay our welcome! It's purely theoretical at this point but would be amazing if it really happened!
Hope you are doing well @Ben Howell and enjoying CA! Best wishes at OMI & Gordon appts.
Klonopin talking? .I was reminded of the incredible beauty of our planet.
I know this may be slightly off-topic @Ben Howell, but it is important to me. Do you have any idea what may have triggered your transition from moderate to severe? Anything you feel you could have done - or not done - to avoid it?Thankyou @Rick Sanchez and @Hutan you're both very kind. It's only since June last year. I was moderate until then. But as we know it can get much worse and I am fortunate, though hard to feel like it sometimes, that I am not as severe as some. For example while I cannot lift my arms/legs or walk at all without instant muscle shaking and weakness, I can still speak and type on iPad for which I am grateful for. I am just annoyed I cannot help more right now!
B
@Ben Howell
We managed to navigate it successfully (the little things) and got on the freeway. This was fun. No one had told me but apparently it's pretty much a free for all. Overtaking happens on both sides, cars cut you up (we were in the right lane I promise!).
I know this may be slightly off-topic @Ben Howell, but it is important to me. Do you have any idea what may have triggered your transition from moderate to severe? Anything you feel you could have done - or not done - to avoid it?
Me please?Unfortunately no. Whitney can't tolerate hardly anything. He can't even tolerate us, but no choice. We have to hook up his food, take out pee, (et al), and fix covers, etc. we tiptoe and don't touch him. No sound. Eyes covered. His schedule is now keeping me up till 8-9 am, so I sleep in day and then get to hang out with Ben and Claire. So nice. Who's next???
Just let me know when you'll be in town! We'll work out something if possible. We love meeting PWME! Especially PR buddies!
Just let me know when you'll be in town! We'll work out something if possible.
One tip Ben-stay out of the ZOLOFT lane they are the worst drivers!
I can think of nothing I would rather do than meeting you and Ron together with @Gingergrrl! Thank you again. Hopefully the planets will align for this event!
I sneaked a peek out of the plane window for as long as my shaking arms could manage, and I was reminded of the incredible beauty of our planet. We flew over Greenland, and the lower parts of Canada and saw the mountains from 40000ft. Certainly to someone who has not been outside properly since last June, it was breathtaking. For some reason those glimpses lifted my spirits hugely. There is a world out there, an awesome world, and when we are all well again we will see it.
Me, too, @Mary and sometimes the planets do align and maybe it will happen. It's good to have a fun goal to think about (I don't mean that the illness is fun and nothing could be further from the truth- I meant meeting you and Janet & Ron... how cool would that be)?!
Many thanks.I can PM you @Barry53
But yes I do believe there were some things that did accelerate or even cause my transition to severe.
But I have always been on a downwards trajectory with the illness, slow but definitely downwards fwiw, so cannot say for sure. No half day remissions, no weeks of feeling better etc.
The main thing that I wish I had done more of, is forced rest, resting even when you feel like you may be able to do something. I forget the acronym. Wearing a heart rate monitor to avoid overexertion, and avoiding crashes religiously.
I should have given up work 2 years earlier instead of persevering with mild CFS which was madness, but hindsight is a wonderful thing.
Easy to say, hard to do.
They say you should not gamble ... but ultimately life is just one big gamble? I am always impressed by people's resilience and sheer depth of spirit here in PR. Survivors if ever there were.I should have given up work 2 years earlier instead of persevering with mild CFS which was madness, but hindsight is a wonderful thing.
Easy to say, hard to do.