I’m new to the forum and also relatively new to MAV in general. Pretty quickly I developed 24/7 daily symptoms, but I still get days that are markedly worse than others. I’ll wake up, stumble out of bed and know that today it’s just not gonna happen. Do you guys have any tips or strategies for dealing with the particularly hard days? Quite honestly on these days I’m not able to do much more than lay in bed with the shades drawn staring up at my ceiling so not to feel dizzy. Not only do these days make me feel like I’m not making any progress but also I just feel like I’m going crazy with nothing to distract me. Would love to hear anyone’s suggestions for things that wouldn’t exacerbate symptoms too much but would take my mind of the Mav, or just help with coping. I know how important getting exercise is with chronic migraine but honestly don’t know how some people manage that when I can barely move my head or walk. Maybe some kind of aerobic exercises on my back would work?
I keep myself still when the symptoms are at their worst. I’ve fallen over a few times. Some soft music works for me whilst waiting it out. Depends on how much stimulation you can tolerate. I’ve had to work on acceptance. Trying to fight the inevitable never helped, but I did that a lot in the beginning - a waste of precious energy.
I lost a lot of confidence about exercise and only just getting back to it. I still would not exercise on a bad day.
Do you have some meals in the freezer for times when it might be too difficult to prepare anything for yourself? I find that eating and drinking properly helps a lot.
@Heliotrope the frozen meals is definitely a great idea, as soon as I have a good day I’m going to do some emergency meal prep, that’ll help me feel less guilty about not being able to do much for my 2 kids and husband
@Jumpmax23 I don’t have much advice since I’m new to this as well, hopefully soon we’ll be able to learn to cope better, I’ll be watching this post for sure for any good ideas
I appreciate the comments. Like you said acceptance is definitely really important - something I need to work on. I find myself trying to push thru and convince myself that it isn’t as bad as it is, when maybe I would be better off riding it out and removing annoying stimuli. The whole exercise thing really gets me down. I’m only 24 and was super active, a student and traveler before all of this. Trying to adjust to a much slower pace now. And that’s a really good idea about the frozen foods. I’m actually lucky (or unlucky) enough to be living at home right now with my parents, so they make most of my food.
The radio/music, Audiobooks, adult colouring books, phoning a sympathetic friend to chat. You should find old threads in here in a similar vein to the title of this thread. Really lying in bed does MAV no good. My criteria was always, if I could get to the bathroom unaided, I could get up. To improve our balance system needs to be in use so lying in bed should be last resort. You’ll find more info and comments on that under a thread entitled ‘On being bedridden’. Do take a look. I’m not suggesting you try jogging just sit up in a chair with a headrest amongst the family and be part of the real world. You may need to adapt, move chairs so you aren’t constantly turning your head etc etc and shorten the length of your day. Just adapt and survive as they say, much better for mental health too. Helen