What is strange to me is that every once in a while I will have an almost “normal” day. I won’t be AS tired, I will feel sharper and more coherent. When I have gotten them I have invariably done too much, over exerted myself, and rode the roller coaster back into the valley.
It is very humbling. Seven years ago I moved my wife and I into our home single-handedly—almost 4000 sf of furnishings. I have finished the basement, laid new floors almost throughout the house, re-landscaped the back yard. Up until 18 months ago or so. The den is about halfway done with new flooring (I can’t muster up the energy or motivation to finish). The yard is currently filled with debris from the rainstorms that buffered us for the past 2 weeks. I am afraid that if I don’t get better and start contributing more around the house soon my wife will have had enough. She “knows” I don’t feel well, but it sounds like a cop-out.
[[What is strange to me is that every once in a while I will have an almost “normal” day.]]
That happened to me In the beginning- every week or few weeks I’d wake up in morning, and it’s like I never had the stupid problem- and it would last about a day, maybe two if lucky- then wham- back to feeling awful again- then it was longer between such days- then eventually to where I don’t get them anymore-
I used to think it must have been something I ate, or perhaps I slept better or something I drank-
[[When I have gotten them I have invariably done too much, over exerted myself, and rode the roller coaster back into the valley.]]
Yup exactly- It’ like we get so desperate to feel good that when it does happen, we want to cram a whole lot of living into a short period- and end up suffering- often badly, for days
[[soon my wife will have had enough. She “knows” I don’t feel well]]
The problem with this disease, condition or whatever it is is that it’s not a visible problem like beign in a wheelchair, or missing an arm, or having some horrible skin problem or something- it’s a ‘silent’ disease or hidden disease that othersw can’t see-
The other problem is that they see us on ‘good days’ doing things like raking, mowing, or taking trash out, and that is all they see- They see us working hard for a short period, and think to themselves that we should be capable of it for 8 straight hours- many think we’re faking because they can’t see us shaking, nauseous, dizzy, - they can’t see our minds go to mush- etc- they don’t see us sitting o n the couch later, too exhausted to move-, or the next morning as we have to force ourselves out of bed and struggle through the day, usually out of sight of those same people that saw us work the day before-
I hope your wife doesn’t leave but it’s awful difficult to convince others that we’re really hurting here- because they don’t SEE us hurting, they just see us sitting on couch, and have a hard time thinking we’re anything but lazy-
There’s a website I ran across that describes what it’s like to have this problem and have no one believe us- I’ll see if I can find it- it was pretty good- and hopefully will give your wife a bit of insight into our plight- I think perhaps you need to maybe also let her know you’d be there if something like this ever struck her, God forbid, because you understand how difficult it is, and how devastating it is when people don’t take the condition as seriously as they should because they aren’t the ones suffering from it (But perhaps let her know you understand how difficult it is for her to understand the depth of seriousness of the problem because you don’t ‘look sick’ or ‘look disabled’
I have a hard time describing to others- Basically I just tell them to think back to the last bad flu they had, and remember how horrible they felt, how weak they were during the flu- how everytime they tried to do menial tasks like wash dishes, or sweep, or whatever, how it just exhausted them and they would collapse on couch exhausted after doing so- Then I tell them to try having that feeling for 18 years with NO letup- a constant flu- I ask them to try to imagine having to suffer it steady, with no ability to escape it- ever- After a couple of years of it, it’s overwhelming- It really takes a toll- physically and mentally- it’s a very hard thing to have to deal with, and people that don’t have it simply can’t understand what we are going through-
I’ve seen it reduce hyperactive workaholics to house ridden shells of their former self- It’s a Devastating condition- Hopefully you’ll have the support of your wife through it- but she needs to know it’s very likely only going to get worse- unfortunately