Ben and Claire's adventure to Davis-Dafoe land!

[Gingergrrl]

@Mary will email you later to not sidetrack this thread but love your idea!

 

[Janet Dafoe]

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?

That would be lovely.

 

[Janet Dafoe]

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!

 

[Neunistiva]

@Ben Howell thank you for all the updates even though you must be absolutely exhausted. And big thanks to @Rose49 and Dr. Ron Davis for... well, everything, honestly.

Since people were talking about their experiences I would like to chime in and say that I took a 7-hour car ride to see an ME/CFS specialist 4 years ago. My parents took me, I lay down in the car all the time, we split the ride over two day period and all the time I was not in the car I was in bed in motels. I crashed horribly and never recovered. I'm pretty severe now and bedridden. I did get official confirmation of my diagnosis, but also the sorry-can't-help you shrug. I agree it is worth the risk in some cases, but it certainly is a risk.

 

[Gingergrrl]

I'm sure we can manage more than 5 min!

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.

 

[Jenny TipsforME]

since August when I could not even roll over in bed and was spoonfed

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 "

 

[Janet Dafoe]

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.

Just let me know when you'll be in town! We'll work out something if possible. We love meeting PWME! Especially PR buddies!

 

[Grigor]

I was reminded of the incredible beauty of our planet.

Klonopin talking? .

I'm joking. Must've been amazing to be out and about.

 

[Barry53]

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

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?

 

[liverock]

@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!).

One tip Ben-stay out of the ZOLOFT lane they are the worst drivers!

 

[Ben H]

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?

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.

One tip Ben-stay out of the ZOLOFT lane they are the worst drivers!

View attachment 19458

Made me LOL.


Hopefully will post update tonight but today is very busy.


B

 

[justy]

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???

Me please?

 

[Mary]

Just let me know when you'll be in town! We'll work out something if possible. We love meeting PWME! Especially PR buddies!

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!

@Ben Howell - I had no idea you were so ill either. It makes me all the more grateful for what you do here. Am sending you my best wishes and hope for a fruitful trip ---

 

[Gingergrrl]

Just let me know when you'll be in town! We'll work out something if possible.

Wow, @Rose49, that is so generous of you and would be amazing. At present, I have no trips planned up to OMI but whenever I go next, I will absolutely send you a PM to see how you are doing at that time and if we can work this out.

One tip Ben-stay out of the ZOLOFT lane they are the worst drivers!

@liverock I once saw that on a magnet and it still makes me laugh! Thanks for posting it LOL.

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!

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)?!

 

[FTY]

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.

@Ben Howell, LOVE this - moments like this are powerful when well but so much more moving for us who don't get to go outside much. The world IS awesome! Lifted my spirits just hearing about it, thanks

 

[Mary]

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)?!

I totally agree about having fun goals! And who knows? just maybe ....

 

[rebar]

Ben thanks, you are an inspiring guy. Your natural optimistic spirit shines. I hope all goes well for you.

 

[Barry53]

I can PM you @Barry53

Many thanks.

 

[Strawberry]

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.

@Ben Howell , thank you for sharing that! It is a good reminder to me to TRY to be strict about laying down! I have been teetering on that cliff for about 6 months now. Finally caved in and got a roommate that cleans my house and cooks for free rent. I'm still not doing aggressive rest therapy, but at least I am pacing better.

I am going to print your post and hang it on my wall for a reminder.

Enjoy your stay in California with your dear friend Rose! I know you have been a good friend to her on those long nights that she cares for Whitney. Also, if I lived anywhere near there I would lend you two my mustang, but with 5 bags of luggage and a wheel chair, it wouldn't fit at all. Cute cars but no space. But maybe you could consider going for a test ride at a car dealership just for a joy ride. vrooommm!

 

[Barry53]

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.