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How do people spend there days?


#1

I am so ill that I had to take disability from a job I love. Due to my symptoms (disequilibrium and extreme fatigue being the most disabling ones) there is so little that I can do. I used to be ok when sitting, but now it is even difficult for me to focus my eyes on the TV or read. So, my days really consist of pushing myself to go to a small italian market (where I hold on to my shopping cart for dear life), get some things for dinner, and make dinner. Cooking is so difficult with our ailments, but I really push myself to do that (my husband and I love good meals). Besides that there is so little I can do, except to dwell on this life-altering situation. I have been withdrawn from friends, and I also feel so sick when friends come over as I cannot focus on their conversation and feel nauseous and awful (I used to be a social person). This is all so hard to manage. I’m just feeling extremely hopeless. But, I have to say this forum has helped. It’s nice to know that others understand and are in the same “boat” - ha, ha. Also, very encouraging to hear success stories.


#2

For the first few months I had this really bad I spent almost everyday in bed with the hopeless feelings you are talking about. I could not walk, move, or do anything with out the rocking , wav like symptoms all day. Plus at the time I was having very severe headaches on top of that.

After I read “Heal Your Headache” and started on the diet modification, the change of lifestyle, some therapy and just trying to get myself mentally aware of what was going on I started to feel better. Plus the small dose of Valium I take has helped.

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I have been out of work since July of last year and lost my job in January due to this condition.

A lot of the triggers I think I had were due to the lights( extremely sensitive to florescent), smells, ie perfumes chemicals and such and I have removed all of those from my environment. When I do now go to the grocery store it is during off peak hours, I have a mask I wear if in crowded places so as not to be exposed to the smells, my tv is always on but I do not watch it just listen and glance if something of interest is on. I can not watch really fast paced shows, that seems to bother me.

What has worked for me is staying on a strict diet, staying on a strict sleep schedule, being as informed as possible but trying not to over analysis this or it will drive you crazy.

I have learned I have limitations and that is something I may have to live with, I do try to get some exercise but not too much as that will kick this back into high gear.

There are people I used to associate with that I do not anymore because they do not understand and I find myself getting frustrated always feeling like I had to explain myself.

My Aunt recently had her 90 birthday party which I did not attend because of the number of people that were going to be there and the fear of the perfume and other scents that would have been present. While many may not understand that I did not apologize as I have to do what is best for me I have come too far to have one little thing turn all that around.

Most of my days are spent in a quiet setting, doing a bit of house work, taking care of bills and such, some computer work and going out when needed. Not a lot but that is what works for me.

I have my family and I have determined that I know longer sweat the small stuff , little things are precious and I no longer take anything for granted.

I was at a job I loved for 23 years and now that is over, I miss my friends and talk to them via phone but right now I know I could not be in a fasted pace environment with stress which is a big trigger.

I think everyone with this has to decide what is best for them and what they can live with and how far they want to push it. For me life is very simple now compared to what it was two years ago, but that is okay, maybe someday that will be different in the meantime I remain grateful for what I have and the people I love to surround me.


#3

Lisa,

I understand where you are coming from. I am not on disability, but I was considering it at one time. After 9 1/2 years with this ailment, I finally put a halt to grocery shopping. I kept finding myself at the store during rush hours trying to buy half the store. My wife is blind so she can’t do the shopping, so we just started looking into online shopping. I torture myself enough with work and night classes that I don’t leave myself with enough energy to do much else. I spend a lot of time at home with the kids and my wife when I am not busy with school or work. I work out and excercise at home as the gym just aggrevates everything with all of the noises from everywhere. I can’t jog because of a bad foot, and I have a tendancy to fall so I don’t go for walks very often. People have a tendancy to get annoyed with me because I have set my life up into a routine these days, and I don’t like to break it as I will usually suffer from the change in routine. Even my mother, a nurse, has started to become intolerant of this behavior of mine. I’m sorry, but if I know that hitting my toe with a hammer is going to hurt, then I am not going to put my toe where it can be hit by a hammer.

BTW, don’t let my falling scare you I am a rare case in that regard.

The biggest piece of advice I can give you is that even if you stay home, try to remain active. Go for walks around the block, get a tread mill, maybe some lite weights, chores around the house, anything. Do a little today, maybe a little less tommorow, maybe a little more, do what you are able to do, you will find that physical activity of almost any type will help.

One more thing, find your triggers, and try to avoid them, that way you can find activities that won’t trigger you and you can do more of.

Brian


#4

Brian and Timeless - thank you so much for the great advice. You have a wonderful perspective. This definitely does change out outlook on things.
I keep a regular schedule and strictly adhere to diet and avoid triggers, but nothing helps. maybe a bit with headaches, but not with this darn dizziness and other terrible symptoms. I do try to do some housework, bills, etc. I also walk outside or on the treadmill almost daily. I really push myself to do that. I mentioned in another post that I feel better walking outside than inside, and better on a treadmill than walking freely. when I say better, I do not mean good, but better. everything is relative. I also lift light weights. I wonder if pushing myself to walk ramps up my symptoms and I should refrain. I know Dr. Buchholtz recommends exercise, but I am beginning to wonder. any thoughts?


#5

MAVLISA -

I used to wonder the same thing. What does everyone do all day while suffering from this condition? I was always social until my symptoms hit hard with MAV. I cut myself off from my friends. I would only go to my parent’s house which is 4-5 blocks away. I would not go out to eat or anything. I hated having people over because I had no interest in carrying conversations. I felt better in a car, so I would go for short rides. I would have my husband and mother do all my errands. I often would uncomfortably wait in the car while they ran into the stores for me. I avoided all social situations. Now - I have been feeling a lot better. I have been on the Verapamil since 12/18/08. I go grocery shopping, I go to Target, Walmart. I run errands and I have had people over. I have had my mother-in-law’s funeral services last Thurs. and I was able to handle that and the huge dinner we hosted at a hall for 60+ people afterwards, symptom free. However, at one time there is no way that I would have ever thought that I could do these things again. I have done so much this past 1 1/2 weeks that I am feeling very fatigued. That is my warning sign. We have this one couple and their child (my husband works with the guy) that come over constantly and stay sooo late. I can no longer handle their long daily visits. I used to grin and bear it but I found out after last week, I need to set limitations and that is okay. They don’t understand my condition and you know what? I am done feeling guilty that I have MAV. My friends think that I am back to normal because I am feeling good again but I have to take better care of myself. I can’t just keep going and going llike I used to. Brian, Timeless, and everyone on this forum made me realize - -it is okay to slow down, rest frequently, enjoy the simple things. Right now, do what makes you feel better, I kept my distance from friends for a good 10 months or so. I needed that time to focus on me.
Focus on yourself, do whatever it takes to relieve your symptoms even if it is boring. You will get everything back in balance so to speak. I believe it is hormonal and will not last forever. I am here if you need me. You will be okay.

Nance


#6

Nance - I’m so sorry for your loss. thank you so much for your kind words. THis forum has been a godsend. So glad I found it. I’ve learned that if I don’t want to see friends, that is ok. we do have to do what’s comfortable for us. Sadly, I’m on 480mg Verapamil without any improvements. I guess everyone is different. I am also the best when riding in a car. so strange. I do get car sick at times, but if that doesn’t happen I am so happy in a car. I am so very happy to hear how well you’re doing.


#7

I was diagnosed with MAV after taking early retirement in 2007. In November I got back into the work force despite the fact that I wasn’t feeling all that great. I feel only a little bit better now (I’m up to 40 mg a day of nortripyline). One of the reasons I got back into the work force was that the anxiety created by the MAV was eroding my self esteem. I felt like I had to do something to challenge myself as I didn’t want to turn into a recluse. My job, management of a health club, would have been easy pre-MAV. However, its challenging to work when you are also fighting headaches, dizziness and brain fog. However, I’m not going to give up working but have asked for a part time, non-managerial position at the club. Good luck to all.


#8

I have young children so I must be out and about everyday despite how I am feeling. I often wonder what my life would be like had I developed this illness before having my children. As so very challenging and difficult as it is for me, I do believe it is a blessing for me to be forced to do more then I want to do. I think being forced to be so active helps my recovery. I feel guilty that the childr1en have to have a mother that is impaired. I try to hide my illness from them; however, my daughter is getting older now (8 years old) and can tell when I am more dizzy. I hate for her to worry. She has had to miss some after school activities and I didn’t even sign my son (only 4 yers old) up for any activities because I didn’t think I could handle it. The mornings are so hard for me. The kids need so much done for them in such a short time. It is hectic. Mornings are when I am most dizzy , yet morning used to be my favorite time of the day. I feel accomplished if I can get the kids to school and after school activities and cook dinner. The house is such a challenge to keep clean. I have lowered my expectations significantly. I do miss the time when I could do everything. I was a good stay at home mother. I exposed the kids to alot. We had fun. I smiled and laughed more. I had interests and hobbies, goals and dreams rather then just trying to survive the day. I know this sounds dismall but it is the truth. Funny thing is, in a way, I think this illness has taught me such a wonderful lesson. I so appreciate moments, and days when I feel well. The absence of dizziness is such a great feeling. I so appreciate my family. Material things don’t matter so much anymore. A great life lesson. I just wish there could have been an easier way.


#9

kritlyn - I, too, have learned so much through this illness (eg., what is really important in life). However, like you said I wish I could have learned this some how else. And, I certainly have learned by now so just wish this illness would go away. Even though you are bringing your children to less activities, you sound like wonderful person and mother. Through what you learned, you can teach your children so much about perspective and what matters in life.


#10

You know before all this started I was the type who wore very nice clothes to work,always had my hair fixed and nails done bargain shopper but always had the nicest clothes, we started remolding our house right before this started and it is done now and is very nice.

But when I sit back and think of all those things now they really do not matter in the big picture, as i said before my life is very simple now. My husband is retired from law enforcement of thirty years, I now can no longer work, my kids are grown. Money is now tight but the little things are what brings me joy these days. Seeing my son become grown up and such a fine young man. Talking to my daughter and knowing she is going to be okay. Watching the sun rise, and set. Seeing the flowers bloom. Being able to spend time with my family who are my rock. Talking with my Dad everyday.

Being able to laugh from time to time, crying at a good movie, all the little things …never again will I take life for granted which is what I did for so many years . We had it all planned out but that is not how it is going to be, and in the big picture that is okay I will enjoy the life I have now no matter how simple.

I look around and see so many who have worse issues than myself and I feel blessed. Sure this is all so frustrating to us all but we have each other to talk to and banner around ideas, our thoughts, concerns and wishes. We come from all different backgrounds and from all over the world.

I am thankful for this site where we can meet and share our stories and maybe one day we will all be well but in the mean time I will take it day by day and be thankful for that.


#11

Timeless- that was a very touching post. AS much as I HATE this illness, it has certainly changed me for the better. I, too, used to love clothing. I tried to keep up with the fashions in NY. Now, I wear sweatpants everyday, my hair up, and no makeup, and could care less about that stuff. I think when I am better, I may go back to wearing some nice clothing, but my interior has changed for the better. I really understand what is important now. I treasure the moments with my husband, although I may be crying through a lot of them (I am so sad), I appreciate him more than ever. I just wish we didn’t have to get sick to gain a better perspective. My husband who is a surgeon and sees terrible things everyday, said that unfortunately we sometimes need to go through something bad to truly gain perspective. I just want this to go, so I can enjoy the better me. Your point of living day by day is crucial. I have to try to stay in the moment, stay hopeful, and not worry so much about the future, and just be thankful that this isn’t permanent and believe it. I am also truly thankful to be communicating with such lovely people. It is wonderful that although we are strangers, we feel so bonded by this experience, and provide such support to one another.


#12

— Begin quote from “MAVLisa”

Timeless- that was a very touching post. AS much as I HATE this illness, it has certainly changed me for the better. I, too, used to love clothing. I tried to keep up with the fashions in NY. Now, I wear sweatpants everyday, my hair up, and no makeup, and could care less about that stuff. I think when I am better, I may go back to wearing some nice clothing, but my interior has changed for the better. I really understand what is important now. I treasure the moments with my husband, although I may be crying through a lot of them (I am so sad), I appreciate him more than ever. I just wish we didn’t have to get sick to gain a better perspective. My husband who is a surgeon and sees terrible things everyday, said that unfortunately we sometimes need to go through something bad to truly gain perspective. I just want this to go, so I can enjoy the better me. Your point of living day by day is crucial. I have to try to stay in the moment, stay hopeful, and not worry so much about the future, and just be thankful that this isn’t permanent and believe it. I am also truly thankful to be communicating with such lovely people. It is wonderful that although we are strangers, we feel so bonded by this experience, and provide such support to one another.

— End quote

Sounds like me sweatpants, have not had makeup on in months …but I am going to treat myself tomorrow and get my hair done!

I could not have done that six months ago no matter how bad I wanted to do it.

This has been harder on my husband than even on myself , I guess because I have accepted it for what it is , it is hard for him to know that I am not working and may not be able to again because of all the sensitivities I have now because of this.

It is really funny he said to me other day, I have lost a lot of weight and needed to loose some , but not this much. I just wish you the old you , plump and bitchy. He was not being cruel I know where he is coming from he hates to see me suffer but I have tried to assure him , I will be okay , we will be okay just not what we thought our lives would be.

I hope this does not sound preachy, but I have gained a faith that has helped sustain me through all of this and without it I would be lost.

I think of all you each day and keep you in my prayers, and know that we will all see better days ahead. :smiley: