Another weekend

Another weekend is here, and here I am sitting on the couch all day again. For some reason, the weekends are particularly difficult for me. Maybe because I associate the weekends with engaging in social activities and having fun (what’s that?). I haven’t had one good day of this in over 2 years, and it is so hard to cope. I’m trying desperately to think positively, but it is just so hard. I just want to go out and live my life again. I get so frustrated, as it is incredibly difficult even to walk to the restroom. others have mentioned having some good days and some bad days. Do others never have a good day? I’m just so sick of the chronic nature of this illness. Just wish it wasn’t as debilitating. sorry for the moan. I know it doesn’t make things better for me at all. I wish I could distract myself and watch a movie, but my eyes cannot focus whatsoever. I hope some others are able to get out today.

Weekends are hard for me too. I never want to do anything. Okay I take that back I want to do lots of things, but am unable to do much of anything. I’m using the weekend to recover from the week. It is devastating for me to watch others function normally in society and know that I am unable too. I feel your pain. Your symptoms however are worse than mine. I can focus my eyes most of the time and I am still able to read and watch movies. Lisa, I wish there was something that made some of your symptoms more tolerable. You are so strong to keep going after two years with NO relief. I don;t think I would have made it as long as you. Even now I wake up in the morning and think sh** I can’t believe I have to do this again today. Most days I don’t want to go on. It is totally debilitating and frustrating… even demeaning at times. It really stinks to have to really so heavily on other people on a daily basis.
Is there anything you can do to take your mind off of it for awhile?
Sorry your having such an emotionally hard day (those are the worst)

Lisa, I really feel for you. Because I have had MAV for so long now, I can’t always remember past details so well, so I went and asked my husband how long my bad days without any let up lasted when I had my first really disabling attack of MAV. Five or six years he said. Sounds about right.

I felt just like you did, that there would never be any change, that I would never be able to “live” again. They were very depressing, difficult years. Back then I couldn’t read or watch TV or do anything much really except sit with the curtains closed and listen to the radio as long as it wasn’t too loud. I’m fifteen years on now and life is much better, although not always easy. I’ve hit a bad patch right now but past experience tells me that in time - be it weeks, months, or even years, although I hope not that long - things will turn around again and I’ll be on the up. At least that’s the usual pattern.

I hope you start to have some good days soon. It’s so hard when nothing changes and I agree that weekends can suck. Sometimes I wish I had a magic wand to wave over everyone on this site so that we’d all be MAV free - I find it quite heartbreaking to read of people’s suffering. This really is a nasty condition.

Lots of good wishes to you Lisa


Sarah - thanks for your kind response. I don’t always feel so strong. I really have no choice but to keep on living - the alternative is more grim. But, everyday, I am so sad to live another day like this. This is all just so very hard. So many of us were very healthy and vibrant before this. Little distracts me. I do try to watch tv, but it is very uncomfortable, as well as read, but again very uncomfortable. I have to find a good book to read. I am reading a very deep, solemn book right now which isn’t helping my mood. Remind me - are you trying meds now? if so, I wish you the best of luck on them, and lots of luck for this upcoming school week

Brenda - oh gosh - I really feel for you too being sick for so long. This illness is so cruel. I am glad to here that things got better through time. Do you attribute it to meds, or anything else? I wish you all the best.

Hi again Lisa, I’m not 100% sure what I should attribute the change for the better to - diet, changes in attitude and lifestyle or simply the passing of time. Probably a mixture of all of them. Diet I think was the main thing for me. It definitely wasn’t meds because I felt worse on everything I took. The longest trial I had was on Pizotifen, 8 months. Are you on any meds right now?


I have tried several meds, but only got up to a therapeutic dose on one (Verapamil) which didn’t help. I am currently 4 mos pregnant and cannot take meds. I will take meds as soon as the baby is born. Sometimes I don’t feel like I can wait so long, though, but I don’t have much of a choice right now. I just pray that I eventually find a med that works, as I don’t feel like this will go away for me without meds. I had been on a strict diet for a very long time which didn’t help.

Hang in there, Lisa. You are definitely in a very tough spot and I hope that there are at least periods of the day that are better for you - I am really hoping that as the pregnancy progresses, maybe some relief will come too. It seems that I go through periods (hours and sometimes days) where I can deal with my symptoms better. Weekends are definitely worse for me for a host of reasons (trying to work during the week, social activities with my kids). I try the best that I can to use distractions and get out of the house and have some activity or purpose for each day, even if it is as simple as cleaning out a desk drawer. I find myself looking back on better periods and wondering why they were better and it drives me crazy because I can’t point to any reason - I just want to duplicate those periods and stretch them into longer periods! Cooler weather is heading our way so maybe sitting outside and enjoying the nicer weather will provide some relief. I wish you the best. Ben

I am on 50 mg of Topamax-- I was going to discontinue b/c of my heart rate, but we figured out it was up so high b/c I wasn’t eating enough and my body was rebelling. I’m also on 50mg of amitriptyline. I really don’t think I’m seeing any changes.

I hope you’re feeling better-- I know I had an exceptionally emotional day today too. I can’t wait till I’m tiered enough go to bed and start fresh tomorrow.


Hey Lisa,
I can absolutely identify with your life as I too have just passed my 2 year mark of being a “prisoner” of this illness. I never have a good day… instead I either have horrible or horrendous days. (horrible being my “good” days). I am on a med and that gives me a bit of hope that in time things might look up. I know right now you are unable to take anything so I guess you just gotta hold on as best you can until you give birth and then get back on the the med bandwagon. Since you really only trialled one med, there is still a number of meds you can try full force. Plus, you will have even more reason to get back to health with the inspiration of a beautiful baby. I cry every day, get angry, and just want to feel okay to do the simplest things… .yes, like walk to a bathroom and brush my teeth with ease. It’s amazing how this illness can just stop life in it’s tracks. I try very hard just to take it day by day and not look at the whole picture…stay in the present and not focus on the past or what the future may hold. Easier said than done…

Hang in there. Something’s gotta give, right?

Lisa - thanks, Lisa. Yes, something has got to give!! I sure hope so. I will try my best to stay in the moment. Looking at the bigger picture is just too upsetting to me right now. I know what you mean about brushing your teeth - these simple tasks are far from it now. I am so thankful for the support of this site. I do have to remember that I only fully trialled Verapamil. Although I was on several others drugs, I didn’t give them a fair shot. It looks like the weather will improve a bit this week. I have the same days as you - terrible or more terrible. I am beginning to think that rainy days are my even more terrible days.

Sarah - I wish you all the best on those drugs. What made Dr. Hain put you on 2 drugs? You are trying so hard to get better. Good luck again this week.

Ben - I am so sorry to hear that Topa is not helping. I, too, try to do a small activity each day, and I mean small. Maybe things will be a bit better as weather improves this week - at least I can sit outside which seems to improve my mood a bit.


I am sorry you are having such a terrible time. Are you in bed most of the time or are you able to get up and sit at least for time periods.

I am sure that your hormones are just going haywire right now with your being pregnant and that is making you feel even worse during this time period.

What are you able to do each day…I have developed a routine to the best of my ability and it seems to help me. I know that is very hard but I do it in spite of all of this. It is not much but it is something.

I go to bed each night at same time, get up each day same time and eat at about the same times each day.

I change clothes in the mornings and wash my hair over the shower…wash my face then go about my day. Do very little things during the day…I always have my pillow to put behind my neck which helps my head not be so heavy.

I make sure and have good support shoes on which makes walking around the house easier.

I take my VIT D and calcium each day. I take my small dose of valium each day and I am also taking lortadine tablet each day. I drink PLENTY of water each day which I have found makes a big difference for me.

I am by no means WELL…but I can at least manage at home. I sit down when I need to and lay down if I need a break but try hard not to sleep as it interrupts my sleeping at night.

It is not a perfect world but better than it was this time last year.

This group is exceptional. I find everyone on here to be so caring and understanding. After a terrible day or another discouraging doctor appt I always think about this discussion group and how I wish we could all get together face to face…and I post whenever I can b/c I know how uplifted you can make me feel. I know how terrible I feel most of the time, and I don’t think it even compares to how terrible many of you feel. I too try to go through the motions and do what needs to be done. I go to the gym and do what I can and luckily I am able to read and watch TV. But I also don’t feel like socializing most of the time and I literally force myself to do so. I’ve been on summer holidays, but I’m back in the classroom setting up and in meetings this week, and then the kids come back…and I’m not looking forward to explaining to a whole new classroom of children that I get dizzy and can’t always do everything other teachers can do. I need to retrain another group of students to help me get through each day.

Lisa, I certainly feel for you. I’m so impressed that you are pregnant and suffering from MAV at the same time.

I’m just so glad to be a part of such a supportive group. To have a place to go to where everyone understands what I’m going through.

Lisa Rebecca

Lisa, I’m with you on this one. Longing to just hop in the car without a care in the world to enjoy the weekend…

Maybe someday. Sal

The weather is better today, so I tried to sit outside some in the morning and again this afternoon. But, I was only able to handle sitting outside for a short time. there is a lot of beautiful scenary outside of my home, trees, etc. However, instead of being able to enjoy it, I am just overwhelmed by everything to look at. I couldn’t handle it at all. Then I tried to watch a movie with my husband and only lasted a short time. With each movement in the movie, I feel like I am moving. Not fun at all. And, everything going on in the movie is MUCH too overwhelming to look at. Boy do I wish things were easier.

Lisa REbecca - I can’t agree with you more. this site is great.

Timeless - I do try to do a little each day. I always shower in the morning and wash my hair. And, I try to read a bit, and listen to the tv. And, sometimes I’ll treat myself to a manicure just to get out, but it is quite hard. I have a terribly hard time preparing meals. It is extremely difficult to walk around the kitchen to get meals prepared. I have to eat, so i do it, but it is torture for me. How did life get this hard?