Jamison Hill's Fall: Former Weightlifter Now Has Most Severe Kind of ME/CFS

[Hilary16]

This thread is so sad - Jamieson is a part of all of us due to his courage and compassion in FP, and his disease progression is devastating - yet at the same time, it absolutely resonates for me and thus I feel cheered in a somewhat 'sick' way. The trajectory of this disease is not 'just me', so thank you Cort and all of you for staying connected. I am my own worst enemy with pacing (as so many of us are!) and yet again in a call today with one of the health team I work with, they reminded me that the longer I neglect pacing, and as I age (just turned 65 - yikes!), the less capacity my body has to consider recovery. I realize that I keep getting caught in that old loop of the overachiever personality that if only I just push a little I will get better. Pacing not working is frightening isn't it? Bon Marie, good luck with your move. We moved into the dry desert but the location factor hasn't really helped and in fact my system has got significantly worse these past 3 years. We have just sold and are now locating to a more accessible, easier care house. The spiral costs of this disease - so much, and so little is documented.

 

[Hilary16]

Ps. we have a little RV - the idea of a road trip is tantalizing! wouldn't it be amazing to come together as a community in some wonderful, restful, nourishing retreat place? Love the vision of it.

 

[Bon Marie]

I've been fortunate enough to have available to me a large metal building in the south central NM desert Near truth or consequences. Wasn't the panacea I thought it might be but I think it's better than any other living situation I have tried. There are just so many factors you take into account it's hard to say with any degree of certitude.

And my opinion has changed over time. So many things I say today about my experiences might contradict with things I have said in the past and probably will contradict many things I say in the future again. Probably why any good researcher would give so little credibility to testimonials from people like me and refer to them as antidote. Like for instance once I said the Appalachian mountains in NC I stayed at in a camper were untenable. Than I said they were not much different than NM. Now I think again they are untenable again.

Do believe environment and especially mold plays a huge role in the degree of my symptoms. But I believe it is an extremely complicated relationship. For instance just moving anywhere even a very bad place short term will many times but not always make me feel better. I call this the honeymoon effect when it does. Experienced it many times. But after time it wears off and you can actually do worse. Or even much much worse. But the effects of environment are so profound I know they are a key factor at least for me.

Than you have to add in all the other factors. Like diet and sleep. Even the water you drink. When I think of how incredibly difficult this illness is I think I should just give up. But I am 56 now got 20 years under my belt don't have the type of financial worries many have. I probably only got 20 years left to go. Going to try to stick it out unless it gets much worse than I might not. Don't have the stomach for much more than I have already been dealt. And I suspect it's a much easier hand than many.

Yes, mold is a BIG factor for me as well as many new triggers due to Mast Cell Activation. I understand your feelings when you state, "Don't have the stomach for much more than I have already been dealt." After we have dealt with ME/CFS for 20 years, enough is enough…I am bedridden so much of the time, but I am determined to make my way up the mountain in May. This Wellness Journey is hopefully the beginning of a new mindset~ fresh start, so to speak. Thanx for sharing your experiences; and to you & all who suffer this retched disease, may health return to our bodies & our lives be filled with energy & joy once again.

 

[San Diego]

Than you have to add in all the other factors. Like diet and sleep. Even the water you drink. When I think of how incredibly difficult this illness is I think I should just give up. But I am 56 now got 20 years under my belt don't have the type of financial worries many have. I probably only got 20 years left to go. Going to try to stick it out unless it gets much worse than I might not. Don't have the stomach for much more than I have already been dealt. And I suspect it's a much easier hand than many.

I hear you. I just keep eking out one more day .... and suddenly a decade has passed. It’s probably a good thing my memory is so poor; maybe this way I don’t fully grasp the past hell or how long it’s really been.

 

[Justin]

I just wanted to say as a younge person with a gradual decline over 1 year my biggest fear is to be in this situation. I hope he finds peace among this nightmare of a disease and my thoughts, prayers and wishes go out to his family.