|
All this great advice and insight from those who've been there. Thought I'd toss in my paltry offerings from a male perspective, though it's obviously more complex than a simple linear equation.
Guys like to fix stuff, it's in our nature. When we can't fix stuff, we can at least figure out how to do it ourselves, or know what course to take to have someone else do it. When we are lost, we don't need maps "cause we know where we are going". Of course few of us stop to ask directions, that would be admitting defeat, and we HATE to admit defeat. We'll just double down our efforts and conquer the beast. We like to conquer things, it's in our blood. Sometimes it's a blessing, and sometimes when unbridled, can be a heavy weight hanging from the neck.
He may not admit it, but to echo the other commentary here, he is furious at the disease, which I think all of us go through at one time or another. That is healthy, being angry at things that rob us of our life and vitality is a healthy, normal reaction, but when that anger/passion/rage morphs into a runaway freight train, when it is unchecked, i.e. "dealt with", that's when it becomes a major problem. Even Christ got mad at the money changers and took a whip to them, but he made his point/statement and then moved on. Obviously I'm not suggesting violent avenues here but you get the point.
I know I got tired of trying to reference my fatigue as the schedule-builder in my life, but found that it helped even within my own family to put it into an easier context and/or frame of reference that people could visualize. Since everyone knows what an all nighter does, or long day at work, or exhausting physical labor, or being up with a baby til the wee hours, I usually start there. Then try to explain that all those things can be overcome with sleep/naps/vitamins/caffeine, whatever, and it is a temporary situation.
With fatigue I explain, it's like someone strapped 100 lb. weights to your arms and legs, and all the sleep in the world, all the vitamins in the cupboard, all the caffeine at Starbucks don't remove those weights, in fact most times the above make things worse not better, but at least for me the napping was a way to escape the misery, better to be miserable and asleep than awake, knowing that upon waking, it would start all over again anyways.
Of course now we understand how ccsvi may play a role in all of that, and in fact caffeine is probably the WORST thing one can do, sleeping on a flat bed only EXACERBATES the lack of blood flow, and vitamins are vitamins, they can only do so much, plus, in a cruel twist of fate, it's exercise/movement that HELPS us with our blood flow and to pull that blood out of the brain, NOT laying down and "resting". Wish I had known or understood that or I would have never started napping two years ago! Only felt worse every day! All the provigil did was make me feel mentally hyper, didn't do a thing for my energy levels. Given the condition of my vein output at the time, gee no wonder!
I know that's not all that much help, but just understand that most us guys cannnot deal with things we have no control over, and cannot fix, perhaps that would be a good spot to start with him if I may speak out of turn. Feel free to pm any time if you just need to talk about it, we're on your side!!!
Mark.
_________________ RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
|
News 
Site map 
SitemapIndex 
RSS Feed 
Login
Register
FAQ
