What is your quality of life and how does migraine effect it?

Hi All,

I have been thinking about the quality of life issue for a while. How do you deal with the quality of life issue- how much do migraines keep you from doing what you want to do? How do you cope/deal with this, especially when the migraines are disabling.

Right now, the migraines and fainting are so severe that I am unable to function ot the level I would like to function. Right now, it is hard to do anything. I have to depend on others for transportation. I can't be left alone for long periods of time, which is difficult. I can only do two or three activities a day. If I do too much, I am usually down for a day. Today, the headache has been so bad that I have not been able to do anything.

I do have many good things in my life- supportive family, a wonderful roommate, good friends,etc. All of these things are important, I am just struggling with the fact that I am not able to do some of the things I used to do because of the migraines and fainting.

What is your quality of life and what do you do to deal with it?

Pain free days,
sailingm

Sailingmuffin,

Quality of life. I think anyone with a chronic disease addresses this at some point. Right now, things vary. While I have a M every day, some days are much more mild than others. On the mild days, I force myself to live as normal a life as possible. I go to work and do the things I normally would and treat the symptoms as best I can. The tricky part, I never know what each day will bring - I could wake up to a rager or it could be one of my better days. This makes making plans problematic. Most of my friends know that any plans are tentative and I may have to cancel. It can be very isolating as most people don't understand.

My bad days...well there have been a few I would rather have not lived through. In general they have pretty much confined me to my apartment. I refuse to drive if I don't feel safe and if I have to go somewhere I will have someone drive me. Usually I prefer to hide out at home when things are bad. I will say that most of the horrible days have been due to medications. I'm in preventative trials and I've had a few interactions. Those make the symptoms worse and are maddening. The only good part is that my job situation is flexible enough that I can work from home. Others have more struggles with this but I work with a former chronic sufferer (she still gets the occasional but it's not like mine) so there is a level of understanding. As well that the work still gets done regardless of where it is done from. When you are in a string of bad days...the world looks bleak. There seems to be no end in sight and the only thing you can do is medicate to be comfortable (if it works). This is when quality of life is in the toilet...you are barely comfortable (meds take the edge off it but you are just waiting for it to come back) and normal functioning is impossible. Just taking care of eating and letting the dogs out can be a challenge.

I take each day as it comes and always hope for the best. I make plans for each day and do what I can to accomplish those...doesn't always happen. I'm still hopeful that a preventative will work and break the cycle for me...or that some magic therapy will evolve.

I've been lucky in that I think my overall quality of life is pretty good. It used to be worse about 5-7 years or so ago, when I was having trouble getting the combo of preventatives/abortives down. I was always missing work and/or going home early. I lost some good friends too, who didn't believe I had a chronic condition, one friend I'd know for years accused me making everything up, it got really nasty, and we didn't talk for a long time. I remember feeling so hurt by that. We eventually made up our differences, but we never talked about those accusations she made. I think she did come to realize that I wasn't making it up, though. I missed alot of things in my life, events, family gatherings, etc. But mostly it was being on the edge with regard to work.

Things are better now, but I think my family in general understands that there are times - and luckily they are alot more rare than they used to be - that I am going to miss family gatherings and events, that I'll leave something early or come late, and sometimes when we host parties here at our house, I can only handle so much. Some family members and friends get it, and some don't and never will. I accept that, too.

I'm happy it doesn't happen very often anymore. The last time was Christmas Day this past Christmas. We spend the day going from place to place - morning here at our house; then over to my grandparents' with alot of family (I have over 20 cousins/2nd cousins, and a dozen aunts and uncles, lots of noise); then late afternoon and evening at my parents with my sisters and niece and nephews, and 3 sisters, brother-in-law and parents (moderate noise). I lasted about halfway through the afternoon at my grandparents', then had to leave around 2 before the migraine got too bad. I got home by 3, took my meds, and laid down for a few hours. Luckily I was ok to go to my parents' in the evening, sometimes I'm not.
That was the first time in about 6 months that I'd been affected enough to have to change family plans though. I was happy about that.

My quality of life with migraine is complete crap. I have been screwed over by the health gods and I am feelin the effects big time.

I am 200% different from who I was 3 yrs ago ( when I thought Migraines only happened to other people)

I'd trade my left arm to get rid of it and go back to living.

Alright. Enough negativity. Sorry

Touchy subject for me still!!

A lot of days I spend crying trying to figure out how I got here and why I was given this condition. I try so hard to go out and do things but I end up suffering. I just want to be normal, but this is normal for me and I need to learn how to deal with that, so I'm trying to do that. I often take my meds a lot just so I can feel like a normal mom and 22 year old, but then I wonder what these meds will do to me when I'm 60.

I can't even cook certain things for my family because the smell triggers a migraine. I just don't know if I'll ever get used to this life. The worst is the guilt of taking my narcotic medications. I have no idea why, but I feel so bad taking them. I know I need to in order to have ANY quality of life but whenever I swallow them down I feel like I am a quitter. I'd love to take triptans instead, I think someone up there is trying to teach me something...who knows.

What quality???
(maybe better response later??)

I haven't made it through a full work week in over 6 months. I thought I had it, made it full day Tues, Wed, Thurs., then yesterday a weather front moved through again, and my partner sent me home. I can't hide the drooping eye nor the pain in my face.

Today I'm at work but not sure if I'll make it all day.

Very little social life. We only do things with one of our friends who is always up for last minute phone calls. As in, "Do you want to meet us for dinner in 1/2 hour". Anything longer term than that is impossible. I cancel out to much.

I'm noticing very subtle differences in the relationship with Hubby and I'm not liking it.

Charlotte

Let's see. I work and I go home. I get home about 2, eat some lunch, take a nap for several hours. Then I make dinner for my daughter and myself, watch tv for a bit or read and go back to sleep. Repeat.

I have no social life and spend almost all day in pain of some sort. Besides migraines, I have to deal with facial pain that never stops and fibromyalgia. Sometimes just the weight of my own body hurts so even sleeping can be difficult.

I have to plan out any activities with down time so I can rest. Housework is a joke. I try to stay in two rooms so I have less to clean.

My son is getting married and having two ceremonies, one in Austin TX and in in San Francisco. I don't even know how I am going to get through that. On hope I guess.

Alli,

You just have to plan it out. I'm assuming they aren't on the same weekend (that would be horrible otherwise). Being mother of the groom means that there is less for you than for MOB...and if you are more in charge of one ceremony - delegate, delegate, delegate. There usually is a schedule for the ceremony day and you will have your own schedule and if it includes a nap - then it includes a nap. I was a personal assistant for a wedding back in September and I worried how I was going to do it too. I took meds early and harped at the bride to let things go (she was insisting on doing things herself and it was driving her nuts). I stepped in and took care of things - for a wedding, usually there are people that are willing to step in and give a hand you just have to ask.

That's one thing we have to learn to do - most of us don't want to admit defeat and we need to know when to ask for help. It feels like the M monster has one, but we just outsmarted him and took care of ourselves.

Right. Feeling a bit less... now. Sorry.

I have low life quality. I have FMS IBS and migraine. I am also incredibly old.
My days start about 9am but I don't do mornings. I shift from bed to the couch about 11am.
Hasn't always been this bad, but about September 1998 something shifted.
No idea. I hadn't changed medication nor had I been taking extra.
I had a run of 12 migraine free days in the August, and that was it... haven't had more than 8 since.
Last year it has gone down to 3/4 with the very occasional 5.

We seldom go out this time of year. The windy weather is a killer.
The car is a nightmare, I think it's being bumped around. A half hour in the car is about as much as I can do.
Once in a while I drive and I miss that. I only go about a mile.
We haven't had a holiday since 1992. I haven't been able to work since 1992
I cant do much housework any more and manage to cook dinner about once a week.
I do sometimes get to the walk the dog for 20 minutes.

I have lost all my friends because I am too unreliable and hard work.
Very lonely, and even my family have forsaken me. No one has migraines, they don't get it.
I am an only child and my parents have been gone since 1991. Although they had their own problems, they didnt have anything like this.

It has effected my relationship with my husband. We just have no closeness anymore.
We get along, and he reads things for me because the fibro fog effects my concentration.
But we have no social life together.

I spend a lot of time feeling guilty, and envying people. Even my own mother.
Although I try to travel hopefully, it is hard. I manage to be positive sometimes and have a good sense of humour.
I will not let it beat me, but at the moment I am out of ideas.
I could go on.

How has migraine effected me, It has stolen my life..

Like most of you, the quality of life is very low at the moment. I work part-time, don't always get there and when I do, frequently work feeling like c***. Sorry. I work in a library and can't just walk out as I have to get someone to cover, so usually end up staying. Fortunately the people I work with are very supportive. But it's so difficult trying to talk to the public, speech slurring, feeling vile etc. Then when I get home, having held myself together I sort of collapse and literally crawl upstairs to bed. Sounds dramatic but that's how it is. If I could leave I would but can't until our son finishes uni.

Other than that I make few arrangements, leaving it to the last minute if I can and fortunately most people seem to understand. I try to walk whenever there's a good moment, it makes me feel so good. I care for my Mum too and it's really stressful if I can't get her shopping or giver her her tablets.

Alli, that's something at the moment I dread, which is an awful thing to say, if/when our children get married. I mean you can't get out of that! But HeelerLady is right, you must ask for help whereever you can get it, then the more help you have, the less are your worries etc. Mind you, it's exciting too, isn't it? Two ceremonies, does that mean two new outfits

Liz

Hi All,

[That's one thing we have to learn to do - most of us don't want to admit defeat and we need to know when to ask for help. It feels like the M monster has one, but we just outsmarted him and took care of ourselves. ]

I have been trying to "outsmart" the migraines for twelve years now and no matter how hard I try, but most of the time, I can't. Even though I will do everything possible to get through an event without migraine- I am down with the headache for the next week or so. I usually ended up working through the pain and compromising on some things along the way. I live in spite of the pain. I can't predict it. I can't stop it. I can try to control the more severe symptoms attempt to control the pain. Right now, between chronic migraine, and the chronic fainting spells, it is absoluitely impossible to function. I am stubborn and I hate asking for help. Right now though, I have to ask for help.

I wish I could "outsmart" the migraines, but I can't- I have some level of migraine?new daily persistent headache every single day. I had to stop working on my masters in education due to the migraines and fainting. After 11 years, it got to the point, where I could no longer "fake it." (The fainting spells also contributed to this decsion.) Right now, the migraines and fainting are really wearing me down. I am doing what I can to lead a normal life and I have plenty of wonderful things in my life- a wonderful roommate (who is also my best friend), an understanding boyfriend, a supportive family, and good friends. But it is impossible to work or even volunteer right now. In fact, my life is a far cry from what it was just a year ago.

I am glad yuou can outsmart the migraines and get thrings done, I can't. I find that I have to do things in spite of the migraine, but I can't control them and I certainly can't outsmart them.

If you do "outsmart" the migraines, how do you do it.

Sorry if this post sounds a little rambing. I just have a really bad one today.

Pain free days,
sailingm

Sorry Pen, think there's a typo in Line 3. But you made me

Liz

Liz what makes you think thats a typo???

aww why'd you fix it?! It made me laugh too!

I think it might have been a freudian slip. Its pretty much how I am feeling.
You want me to put it back...

What I meant by outsmart is to find a way to do what you want regardless of the M. That often means that we need help - we can't do it alone. I know there are a lot of us who are so doggone independent that we'd rather cut our head off than ask for help. I'm a member of this tribe and it is very hard for me to ask for help.

Sailingmuffin - you seem to have a particularly hideous brand of M along with the fainting spells. I don't know how you manage but I'm not sure I could. I had 2 weeks of drug interaction that confined me to my apartment and the couch. I was going bonkers...I just wanted to be able to do the normal things. Drive my car, clean my bathroom...it was hard to feel so incapacitated. I hated relying on someone else to do those basic things for me.

There are days that the M wins...everything isn't peachy. But if there is something I really want to do or need to do...I make it happen. I may be drugged to the eyeballs but I still make it work. I do everything in my power to make things tolerable and have others do the extra things that would do me in (I still hate it but I've given in). I know you said you are in a bad spell today and that makes the optimistic look impossible. I do hope things get better for you.

i think the best you can do with migraine is aim for a decent preventative regimen and pain management.

you can waste years of your life chasing a specific reason or diagnosis for this problem. finding a base root is important for preventatives to be effective.

if you can find a job that you can enjoy, diversify your life with hobbies and interests, family, love, etc.,.... i think that's the best you can aim for.

I currently think of myself as very lucky because I can lead a 90% "normal" life. It was not always like this. Back in college I had such a tough time making it through the days. Now I can work full time and get my housework done, but many times will still crash. I do need to cancel plans fewer times and have less of the really bad days (with my new meds and better control over the pain). I think that if you can't lead life the way you'd like to (with work or whatever), then you need to make whatever you can do the stuff you like. Find some hobbies that you can do on all days but maybe your very worst. Find the things that make you truly happy. I have had those low points where it is like "what in my life right now is worth living for?", and during those times, it was more the hope for the future than the present. Now it is more so the present along with the hopes for the future. I have learned to adapt. I only schedule what really needs to be scheduled, and make a list of the other stuff and do it on my own time. I take advantage of the good days without overdoing it (which then makes the bad days that much worse). There are times I've just had to take a break from all the doctor visits and trying new medications, then after awhile I find myself ready to go back to it all. Finding your own balance and what works for you is the most important.

Porsche Fan wrote: if you can find a job that you can enjoy, diversify your life with hobbies and interests, family, love, etc.,.... i think that's the best you can aim for.

I would aim for that, but I cant work. I cant pursue my hobbies. I do thank God for the love of my family. Right now that's all I have.

Hi All,

HeelerLady, Sorry, I gues I misunderstood the 'outsmart the migraine phrase." I guess I got carried away, because this disease, which I have fought for so long, finally seems to be winning some of the time. You are correct in that I seem to have a particularly virulent form of migraine. The migraine combined with the fainting problem, which causes me to faint or fall an average of 8 times a day, have really decreased my quality of life.

I can no longer drive. I tend to make plans with friends only a day or two before because I never know how I am going to feel at any given time. I really hate this. I can only do a few activities each day. I would not be able to do a lot of them without the help of friends and family. I have a wonderful friend and roommate who can drive me places, hang out and have fun with. I do have a supportive family and a great boyfriend, who doesn't mind the migraine situation. So I guess i do my best to live in spite of the migraine and I try not to let it dictate what I can and can't do.

Pain free days,
sailingm

my work got on me about leaving early (sometimes with a bad migraine I would leave 45 minutes early) and not arriving on time (I would take the extra time to ice my head before work) and they complained about "missed days" which were really for my 90+ grandfather who I was in charge of his care. So now I arrive at work exactly on time and leave at the end of the day (never early) and don't take a day off for migraine ever. I am here in body but I am not always 100% that's for sure. At home my husband did get frustrated with my lack of doing chores with a migraine-re:letting things go b/c of migraine. So now, I make sure to do all of my chores no matter what and then I can crash. But I do crash. I will go to bed at an obscenely early hour, otherwise the migraine comes back the next morning. If a migraine is coming there is nothing I can do to stop it. But I do work to avoid all my triggers (certain foods, eat all meals on time, sleep enough-not to much and don't overdo it-re socializing/errands/I don't go out on the evenings and I keep my weekend slow key-exercise induced migraine is a problem for me so I only walk). So I have missed out on a lot. I don't have alot of friends b/c I couldn't maintain them. And certain hobbies (re: horseback riding) just aren't feasible b/c of the constant migraines. But I do work, keep a house, manage a marraige, and try to keep up with my family-although I haven't had them over to my house in ages because hosting is too much for me and I dread it now.

My life is of most excellent quality. It is exactly as it is. I have no expectations so I am able to enjoy the "right now." Like being able to message to all you fine people.

Frustration, anger, anxiety all come from expecting life to be a certain way. Each life is what it is. And all any of us has the "right now." Accept, be thankful for being alive in this remarkable time, and learn to love with all your heart and soul. I honestly believe that learning to love is exactly what life is about.

I know I am being a philosophical twit ... but I really believe this nonsense to be true.

I have been at this now for about 15 years now.

Always hoped that by now, things would be better.

Have tried every preventative out there with little or not success.

Don't sleep much and have some kind of pain almost every day.

Lost alot of friends when I had to quit my job, and due to the fact that I so often had to cancel plans I made with them.

I used to keep my house spotless, but have had to change my standards a bit.

Try to get alot done on the good days that I have and that just has to be enough.

Thank goodness that my husband's business is doing well, I am greatful for that.

I think the thing that bothers me the most is that on my bad days, I can't watch my grand-daughter and she has to go to daycare.

It just kills me when I don't get to see her.

I feel like I am letting her down.

When she knows I am feeling bad, she will kiss my head. It is so sweet.

Anyway, Richard, I will try to remember your post.

All we have is the here and now and we need to just make the best of it.

Cindy

Richard, have you done NLP/CBT?? You remind me of some of my course material...
But, you

philosophical twit

, you do have a good grasp of it all.
It is good to have your posts.
I used to be more like you, but they got worse. I got FMS and now it is just the odd day I get those
Carpe diem moments.....They are so gossamer thin.
So I run between the clouds, but I can still do it sometimes...
Dont go away Richard, we need your positivity.

Cindy, grandkids...hearbreaking and I feel so guilty and useless....yes.
My grandson will be starting nursery in September at less than a year so his mother can work.
(sore point, she doesnt need to)
I strive to be better to have him here instead.
But I longed for this with his sister 3 years ago, and instead I got worse.
The Gods do not smile on me for now.

Hopefully they will for us all......soon....
A breakthrough could be just around the corner....could it not Richard???