I have a bit of a problem. I talked to a counsellor recently, who thought it’d be a good idea for me to start getting out again (I’m housebound thanks to MAV if you didn’t know). My parents* agreed, of course. The problem is twofold… First, I’m almost completely sure that it will make me feel like crap, like any activity does right now… Second, since I don’t do it myself (again, right now), they want to add some kind of “contact person” to help/force me to it. They figure my parents can’t, because they would feel bad when I feel I’ve had too much (i.e. feel sick). I know their intentions are basically good, but I don’t think I’ve seen one MAVer who has gotten better by simply forcing through it! Given how extremely sensitive I am to visual input and motion, I just don’t see how this could work as long as things are this bad.
My parents, at least mom, figure something like this: The more I do, the better I will feel. Eventually I’ll either be getting close to feeling (and being) normal, OR, I will feel only slightly better but still “able” to do more things.
I disagree, and say that the more I do, the WORSE I feel! (This is pretty much fact as it is.) The only way out I can see right now is to get this under control by treating it (mostly by finding the right meds, I guess). When the symptoms allow, I do more and more. That I can see happening and working - it’s not as if I prefer sitting here alone day in, day out… If I felt better, I would absolutely start doing more, no doubt about it.
So, in short…
Their way: Force me to do stuff, with increasing difficulty, to make the symptoms lessen more and more.
My way: Get this under control, and when I feel better, do more and more as the symptoms (hopefully) lessen.
What do you think? And, what, if anything, has your docs said about this?
The http://www.ncbi.nlm.nih.gov/pubmed/11775522?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum I’ve talked to, says that when migraine is uncontrolled (which it no doubt is in my case), any kind of VRT/excessive stimulation often make patients feel worse for no benefit at all. He’s a ENG technician who talks to a lot of dizzy people, so I do trust what he says.
- I’m probably the youngest member around here; 21 and living at home, much because of the disease.