Coping when nothing's comfortable to do

OK, here’s a question that I need help answering.

Sorry if I’m becoming too frequent of a poster…

Anyway, as most of you know by now, I’m only on about day 11 of treatment for MAV. But I’ve been lightheaded for 10.5 weeks now. (I only got the right diagnosis 2 weeks ago!) I’ve sort of “lost the last 2 months of my life” to it, as I’m not comfortable enough to do more than stay at home, go to work, and occasionally go out for a meal or a movie or something.

I have few good days, but a fair amount of “OK” days where I can at least do SOMETHING. Every now and again, though, I get days like this one – wake up and BAM, I’m dizzy, no trigger at all. On those “worst days” like this one, even the most innocuous activities – getting up, walking around, eating food, sitting up straight, doing laundry, petting the dog, cleaning up a room, tossing stuff in trash bins – on days like this, NOTHING is comfortable. You just want to lie down and close your eyes, because that’s about all you can do that doesn’t make your head swim quite so much.

I’ve been talking to Mom here at home, as she’s concerned. As she says, “it’s no way to live” (just lying down and doing nothing), and I agree, but what can you do? So my question to you guys: When you have (or had) your worst-of-the-worst days, when there wasn’t a thing in the world you could do without getting dizzy, how did you cope? Do you just allow yourself to have do-nothing days, or do you force yourself to be active? What activities, if any, did you find tolerable?

OK, I’m of the belief that until the medicine - in its own time - makes me better, I’ll probably have to take it easy and just have days where I don’t do as much. I know I won’t have “my old life” back until I’m better. I don’t think forcing myself into activity has helped; I think my body wants to take it easy. So when just waking up is all it takes to make you dizzy for the day, and nothing’s “doable,” do you just allow yourself the occasional do-nothing days? Is there anything wrong with that in the “transition period” when you’re waiting for the medicine to begin gradually helping?

Sorry, everyone. Hope my frequent posting isn’t getting under everyone’s skin. I’m just trying to figure out the best way to get through the days while the medicine is given its time to work.

George -

Do not feel bad about posting frequently. We are here to help you through this. You will get through this, I promise. Please do not give up on the medicine, you’ll get there soon.

I have been exactly where you are now. It is terrible and no one quite understands how awful it is. On days that were just terrible, and there were quite a few of those (I had this 10 months before getting the proper diagnosis and medication), I allowed myself to kick back. I have two young daughters and trust me I would push myself. But for the most part I would lay down a lot. I would pop movies in the dvd player for the kids, and lay down in bed with my eyes closed. I would get up to do chores for small periods of time, then lay back down. I had no choice. I think the body needs to rest as much as possible. I felt so guilty about how I was living but ya know what, it is how we help our bodys rejuvenate themselves. I hope that makes sense, there is not much else we can do. I rarely lay down during the day now, I can’t even remember the last time I have done that. You will get to this point too. For now, lay down, relax, think good thoughts, be postive, baby yourself and never feel guilty about it. We never asked for mav all we can do is let it pass. I do believe it does and will for the most part. I will pray for you.

Nance

We have all been where you are and some are still there so please do not feel guilty about posting or asking questions . I will share with you what has worked for me as to this point I have been unable to tolerate any medication other than a small dose of Valium everyday.

I got the book Heal You Headache and followed the program for several months and started to see at least some improvement.

Here are the things that I have done that made it better.

  1. Diet Modification …I cut out all the triggers and started to feel some better but it took about a month.
  2. Get plenty of rest…I go to bed the same time every night and get up the same time every morning (within 30 minutes on either end)
  3. Reduce any stress…Easier said than done at times but you have to learn to say no and not feel gulity when you cannot do something , or if friends do not understand. That may mean lifestyle changes . Sometimes they are drastic.
  4. Eliminate any other triggers…Bright lights, chemicals, smells, perfumes are huge for me so I do not expose myself to them at all anymore. I have little mask that I wear when I find that may be a problem.
  5. Stay well hydrated…I drink a lot of water now as before I did not .
  6. Do only what you feel like you can do until this improves. Do not push yourself right now the time will come when you can get back to some activities , but you will know when you can do that.
  7. When you feel better , get a bit of exercise…walking is fine to start with but do not overdo it.
  8. Have you Vitaim D levels checked…A lot of us here found our levels were low, while there is no real scientific evidence to support that being a cause , I find it rather odd that a lot of people have that issue who have this disease.

The thing I have learned so far is that I am not as “normal” as I once was but this is a process and it takes time, more than we would like at times . Do not feel like you have to do anymore than you can do right now. Rest let your body rest and your mind rest to be able to deal with the bad days. Enjoy those good ones and if I have learned anything it is i no longer take things for granted.

Understand that you have to take care of yourself and do not let those around you push you to do things you can not do right now , that day will come but to push it IMO only slow the process of healing and getting better.

I am by no means cured but I am better than I was this time last year…mind you I no longer work because I could not with this …and the anxiety that has come with this can be difficult at times but i think that is where the Valium has helped me.

You will see better days ahead…many here can attest to that fact. Just do not give up!!!

We are here to listen and answer the questions you may have…we will all get through this together with the support needed to understand it is not easy and there are many who do not understand.

Timeless…the coping skills and suggestions you shared for George…i could not disagree with you. You are sooo right! Diet and getting enough sleep are so important and making sure you don’t go to bed different times each night. Try to go to bed near the same time…easier said than done. Working part-time rather than full-time has helped considerably too. Plus…changing the kind of work i do for a living compared to when i first came down with this condition has been a plus. I honestly try to keep my life Simple…no big Surprises.

Joe

— Begin quote from “joseph0952”

Timeless…the coping skills and suggestions you shared for George…i could not disagree with you. You are sooo right! Diet and getting enough sleep are so important and making sure you don’t go to bed different times each night. Try to go to bed near the same time…easier said than done. Working part-time rather than full-time has helped considerably too. Plus…changing the kind of work i do for a living compared to when i first came down with this condition has been a plus. I honestly try to keep my life Simple…no big Surprises.

Joe

— End quote

I go to bed every night around 10 or 10:30 and I am 6 or 6:30 everyday, I have found that my body has gotten very used to the time frames and it is almost like it says “okay bedtime”.

Joe you are so right keep it simple is what i have to do though others do not understand I have learned to accept that and do what I can on any given day , which many days may not be a lot. But that is okay for me to keep this at a manageable level.

You are right surprises are not good for this condition and I try to keep them at bay…

Hi George,

I agree with what everyone else is saying - you really can’t push it and have to take it as easy as you can.

When I was at my worst, and virtually housebound for a month I stayed in bed as much as I could (didn’t feel as awful) and watched a lot of TV (didn’t make things worse).

I agree with you Mum, it’s no way to live, but it will get better. It was a great comfort to me finding this forum, to know that there are others in the same boat who ‘get it’ and who have a lot of great information and support to share.

Hang in there,
Victoria