Sunday, May 27, 2012

Anyone else not able to work due to migraines and other related health issues?

Susan
By Susan Friday, August 07, 2009

Hello migraine community,

 

I guess I'm appealing to those who have been unable to work with migraine disease.  I completely dread the "So what do you do?" questions, and also the (by those who haven't seen me in years) "How's work at the college?" questions.  So much of our culture, and us as people, are "what we do".  So what happens when we can't do?  The old, "I'm not working now", "I'm unable to work now", "I'm a trophy wife" ...just kidding here  :)  don't work, and invite more questions--I guess I'm just embarassed by.  I don't know why I am so uncomfortable admitting to this illness, this frailty (maybe I see it as a failing?  aren't we supposed to overcome illness and get better?  It seems to be expected, or was in my family--you kept going on even if you were sick, no matter what). 

 

The fact is, the last few years have been a black hole for me.  Haven't worked.  Haven't done anything new.  Haven't had much fun at all (except what I can tweak out of those all-to-brief, less-painful, somewhat-functioning, brief moments in time that I cannot forsee, or predict, but just hope for).  I have been in pain, gone to a myriad of appointments involving all kinds of tests, traditional and alternative therapy, mostly extremely painful and non-helpful, and, at this point in time, I am so limited in what I can do.  I stay home, mostly (carefully managing meds to avoid rebound), dreading the days I have to stay off meds (means unbearable pain and even more limitation).  When I do get out, it's usually to play catch-up--groceries, drug store, various errands, etc.  An occasional lunch or dinner out is such a treat.

 

I have the disease no one can see.  The potential "silent killer"--it does produce changes in the brain over time, leading to goodness knows what eventually.  I mean especially silent because unless we complain out loud, everyone thinks we're fine and dandy.  And who wants to be known as a complainer?  I guess when people ask questions about what I do, I especially don't want to sound like a whiner (remember the characters from Saturday Night Live?)  I know the constant pain has interferred with how quickly and efficiently I can think things through, I joke about having senior moments (I'm 48), but my brain seems to be working on overload a lot (in dealing with all this pain and stress) and something has to go...

 

I've been out of work as a college professor since 2005 due to a 2004 car accident (officially given a leave for one year to recuperate, then couldn't go back to work at that time so I was let go).  Before the car accident, I had manageable migraines, a few a month.  My meds helped, and I lived a "normal" life: was able to participate in my family life, activities I enjoyed, work I enjoyed and was committed to, exercise, volunteer work, etc.  Then after the car accident, a neck injury sent my mangeable migraines into overdrive, then overkill.  The neck pain is constant, along with neurological complications.

Comments (56) |  Add comment
Anonymous
Kayla Kuchta
8/ 7/09 4:33pm

Hello there,

   First off I would like to say that while reading your post I found myself almost in tears because I have never met anyone who I can relate to when it comes to the migraine pain and all of the wonderful things that come along with being a migraine sufferer. People do not realize that it takes it's toll on memory, thought processes and wears down the psychological state and physical state of the sufferer.  I just turned 22 years old a month ago and have been suffering with migraines since I was 12. Usually hormonal..predictable and managable. That was, until I had my daughter 2 and a half years ago. I did not suffer from one migraine the whole time I was pregnant. (Doctors often joke that I should just keep getting pregnant to avoid the agony..which isnt an option as a single mom!) Last year I began getting them more often than once a month, usually when I got my period and also when I ovulated. I also began to get "silent migraine's", which would make me sick to my stomach, have loss of memory, an inability to talk straight or even think of the right words. Pretty much the same thing as when I get a full blown migraine. Actually, right now I have something of the sort, which is why I came upon this site. I am always researching. Oh, I am also a pre-med student and an emergency medical technician, so I have learned a lot about migraines, risk of stroke, etc.. from schooling. 

 

Unfortunately I can not work on the ambulance most of the time because I get migraines from the many triggers associated with being part of a fire department. ( lights, sirens etc..) I recently went out at night with a friend of mine for the first time since before my daughter was born. I have stopped living life because every time I do something out of the ordinary, I end up with a migraine. That's not to mention the fact that I am sick from when I ovulate until the last day of my period, sometimes longer. Usually I have the silent migraines and have to take zofran for the nausea and just deal.

 

I've experienced driving in the car with my daughter and loosing my vision due to a "migraine" or maybe a mini stroke..doctors can't figure it out. However, after I lost my vision, I did not get a migraine like with a "normal aura". It's confusing, and frustrating.

 

I know how you feel.

 

Life has just been put on hold, every month, for 3 weeks. I try something new every month. This month it was Aleve and Zofran. I must say that taking Aleve every 12 hours reduced the migraines more than anything else I've done. (I recommend zofran for anyone who suffers from the chronic nausea associated with migraines) This leads me to believe that my loss of vision, loss of hearing on occasion and most migraines are due to inflamation due to hormonal changes.

 

Either way, I can feel your pain, literally. It is hard. It is especially hard to tell people what you suffer from without sounding like your complaining. I have one friend. She is the only person that I have met that has total understanding without ever having felt a migraine or chronic nausea. Most people around my age do not understand nor want to hear "excuses" as to why I never go out. That once in a while going out on a friday night is definately a treat!

 

My daughter is getting back from her walk with my father. I would love to keep in touch. 

 

Stay Strong...Stay Happy.

 

Kayla

Susan
Susan
8/ 8/09 3:10pm

Hi Kayla!

 

So nice of you to take the time to respond.  Wow, you have a lot on your plate--and especially with a little one.  I know how difficult it must be for you.  I have also had migraines since late childhood/early teens (or maybe I just don't remember having them sooner--my mother swears I had them since I was a baby), though it seems like its been forever.  I was also a young single parent once, going to college part-time, working part-time, who also had to cope with migraines and childcare.  Thank goodness you have family to help with your little girl, they must seem heaven sent.  I remember my grandparents helped me out often when my son was little.

 

Know that this time in your life, with a young child, school, illness, etc, won't last forever.  You will persevere.  When you have a little one, you do it for them, even when you don't have the willpower or the energy to do for yourself. 

 

But being down three out of four weeks in the month takes its toll.  How unfair!  The least migraine pain can do is cooperate and give you a break once in a while :)  Even during the week you are well, you must be drained from being sick for three weeks, and dreading knowing what is coming for the next three weeks.  Ouch.  It's amazing that you've been able to accomplish as much as you have!

 

So I'm not the only one with memory/thinking issues related to chronic pain?  Sometimes it seems I'm in "stupid" mode, not clear about things I used to be/should still be sharp about.  When I'm in the throes of coming down with/having/and getting over a migraine I am on autopilot, and not good for much else.  It must take quite a bit of extra effort on your part to be able to complete your studies.  I would recommend you speak to your professors individually about what you are dealing with (both family-wise and health-wise) to see what accommodations could be made for you in the classroom.  I know, as a college professor, I always wanted my students to help me help them succeed, and knowing that they had especially difficult circumstances ahead of time really made a huge difference.  Please let them know.

 

I'm nearing my limit on computer-glare time (am looking into getting a screen to filter this) and would love to hear about your journey as you work toward your goals in the midst of migraine disease.  My heart goes out to you and I am rooting for you!

 

Take care.

 

 

Anonymous
Anonymous
8/ 7/09 7:07pm

I have had chronic migraine for many years now.  I am 39 and feel like I have not accomplished much in my life.  I have lost countless jobs due to my illness and have never been able to keep a job for more than 1 1/2 years.  I am tired of trying to work and then feeling like a failure everytime I have to call in sick because of a migraine.  Which happens several times a month usually for 3 or 4 days at a time.  Doesn't leave many work days.  The lack of income is just as stressful as the migraines.  It feels like a never ending pit that I can't get out of.  I completely understand where you are coming from.  I get a lot of comments about what I do and why I can't work.  It gets old really fast.  I spend every day in pain hoping that some day I will get to live a life without pain, at least a majority of the time.  Until then, I take it one day at a time and keep searching for answers.

Susan
Susan
8/ 8/09 3:32pm

Dear anonymous,

 

Thanks for taking the time to respond.  Sounds like you are dealing with the same issues I am, though I'm currently not working at all due to the chronic pain.  But I know what you have experienced, getting sick, and each migraine attack affects you as you come down with it/have it/and recuperate from it.  Even after the actual attack, if you try to function normally, it can set you back into "having it" mode all over again, and just prolong the attack.  When I get a migraine, it's usually at least a three day affair, though once I had one that lasted several weeks!  Thank goodness for the feedback on this site, because it encouraged me to treat it at the hospital if it lasts too long.  Though, any amount of time with a migraine is too long!

 

As for calling in sick, being sick, the feedback from others--it's awful.  I know I don't want to be known as the "sick" person.  After my car accident, the neck issues and resulting increase in migraine frequency came on over a period of time, and I admit I worked when I should not have.  I just did not prioritize my own health, and my closest family member kept telling me to go to work, it would get better.  But it didn't.  I guess I felt I "had to" work, and did, for almost a full year after the car accident.  But then, the pain just wouldn't stop, I couldn't drive (can't with a really bad migraine, anyway) and just plain could not function.  I guess only when I hit bottom did I finally give in and begin to call in sick.  But there was always the "when will you be coming back in?" pressure, and how can you predict when you will be well?  I know I have had no luck in scheduling my migraines for a convenient time :)  As if there could be any.

 

Please keep up with trying to find a solution for your migraine disease.  Mine are related to a neck injury that is inoperable, so I'm stuck with the increased frequency of migraines until the neck issue resolves or disappears magically (I wish).  But there must be a solution out there somewhere for you, are you working with a good doctor?  I'm dealing with this issue now.  Know that migraine disease may not be "curable" now, but it could be/should be managed in a way that gives you some sort of life.  A better quality of life, for sure.  People (meaning the general public, even those near to us who should know better) don't have a clue as to how painful/miserable/debilitating/etc. this disease can be.  And when migraines become chronic, it can make your life so much more difficult to take any joy from at all.  But know that you are not alone in dealing with these issues.  I can relate only too well.

 

Take care.

Penguins94
Penguins94
8/ 9/09 11:17pm

Thank you for the encouraging words!  I have been to a migraine specialist in the past but not for a while.  I am going to call a different clinic tomorrow and see if they can get me in soon.  It is the Anodyne Clinic in Dallas.  I have family there so that will make it easier to travel up there to see the Dr.  

 

My parents keep pushing me to get another job but I am not even trying at the moment as I know I can't keep a job right now.  I would call in sick or work sick (which is really pointless as you are not productive) more days than I would be useful to my employer.  I am desperately trying to put together something I can do on the internet from home.  I think that is just about the only answer for people with chronic migraine.

 

I hope you find some help as well for your neck problem that is perpetuating your migraines.  Have you tried a chiropractor?  I see my chiropractor on a regular basis and it does help it is just not enough right now.  I don't know if a chiropractor could even treat you but I thought I might throw the idea out there if you want to research that avenue.

 

Take care!

Angela

Susan
Susan
8/10/09 3:48pm

Dear Angela,

 

Hi, so glad you're trying a new migraine center, and have family near there to help you out.  One can only keep plugging away until something works.  When you find that something, then you will certainly feel up to looking for (and be able to keep up the schedule of ) a job.  Your health must be your first priority.

 

Thanks for the suggestion about a chiropractor--actually, I did try one immediately after the accident, but not since, so it's been a few years. 

 

I'm going to start with a new doc at a Headache Clinic first, then, and if that doesn't work out, I'll look into trying other things (anything) elsewhere.  The quest is on for relief from this chronic pain.

 

Again, good luck with the new headache clinic.

 

Take care.

Teri Robert
Teri Robert, Health Guide
8/ 8/09 4:59pm

Oh, {{{{{{Susan}}}}}!

 

NoI hear you. Between Migraines, diabetes, arthritis, heart disease, and more, there are days when I just want to crawl in a hole and pull the hole in after me. Several years ago, I found myself in bed with the Migraine from hell an average of five days a week. Four years of working with a fabulous Migraine specialist turned that around for me. (If you want to know more about that, you can read it in Excerpt 2 - "Living Well With Migraine Disease and Headaches")

 

Even with my Migraines well controlled, everything put together makes it highly unlikely that I could ever work on a set schedule again. Thankfully, I have a job that I can do from home, pretty much on my own schedule. That's hard to find, and I know I'm lucky.

 

There are may of us here who do understand how you feel. In addition to the replies you get here, I think you'd get a lot of feedback from our discussion forum. You'll need to register again once there because it's a separate membership database, but you can use the same member name, email address, and password that you used here. You can find our forum at http://forums.healthcentral.com/discussion/migraine/forums.

 

Please, please, please don't give up on finding help for your Migraines. If your doctor isn't able to help you, it may well be time to consult a Migraine and headache specialist. It's important to note that neurologists and pain management doctors aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

 

Sending you a hug,

Teri

Big Hug

Susan
Susan
8/ 8/09 8:19pm

Hi Terri,

 

Thanks for the hug--I needed that!  I did get a recommendation for Dr. Sheftell in CT, and I am thinking of calling the office this week.  Being in so much pain for so many years, it's been difficult for me to advocate for myself (something I am so comfortable doing for others).  Sometimes I feel overwhelmed with the enormity of it all.  The chronic pain has made brain fog a constant weather pattern for me (I went to Harvard University for this?).  I wish I had someone (insert guardian angel :) here) to walk me through it all, or at least guide me through the process.  Maybe they have patient advocates at the headache clinic--though if they're good, they shouldn't need them.

 

This site is such a treasure trove of brave souls navigating the migraine disease minefield.  Hearing of others' experience, and connecting with them, is like discovering someone else who speaks your native language in a world where everyone else only has a cursory understanding of what you are about.  Knowing I am not alone in the struggles of migraine disease is so very validating.  I truly appreciate everyone who has been kind enough to send me comments, sharing their experiences, the good, the bad, and ugly.  Especially how this disease can make life so challenging on so many levels.

 

As for making the appointment, I guess I just need to muster up the psychic and physical energy necessary to begin the whole process with someone new (insert sigh here).  And commuting to CT won't be easy, but it's not impossible.  I'm at the point where I know I have nothing to lose, the pain is already chronic (it just fluctuates in intensity), and I just refuse to live the rest of my life this way. 

 

I just need to learn how to prioritize myself, my health, my well-being.  I was raised to put others' needs ahead of my own at all times, so this is a major life changing concept for me.  Learning to let go of the guilt I feel about this would lighten my burden considerably.  The Wild Words from Wild Women quote this week said, "show me a woman with no guilt, and I'll show you a man".  How apt.

 

Ultimately, I guess I need to make getting healthier my new career.  That has to start with finding the best doc for me, one who understands migraine, can comprehend 35+ years of medical records, sort out what didn't work (don't want to go down that path again), mix in modern medicine and specialization, and do it all with compassionate patient care.  That's my goal.  Does such a doc exist?  I can only hope so, I haven't found her/him yet.

 

Thanks to the referral and the encouragement I've gotten from this site, I'm ready to try a migraine specialist again.  I will be calling Dr. Sheftell in CT this week. 

 

Thanks for taking the time to share, and for the nudge I needed.

 

Take care.

Teri Robert
Teri Robert, Health Guide
8/ 8/09 11:04pm

Susan,

 

You're very welcome. Glad to see you're going to call Dr. Sheftell. He's a top doctor and a truly kind and compassionate man. When you see him, please tell him I sent him a hug. :-)

 

Please do keep us posted!

Teri

Anonymous
Shoshie
8/ 9/09 8:17pm

I get it!  I am absolutely in your shoes.  I have had migraines since puberty and since then have been an unlucky passenger in a few MVA's.  I sustained serious soft tissue damage as well as a "military neck" (completely straight w/no curve). I have constant pain in my neck and trapezius muscles and base of head.  This is where most if my migraines come from.  Hormones and neck pain cause these horrific episodes.  The only thing that has come close to working is Treximet but as you said, this has to be monitored so as not to get rebounds.  I am a stay-at-home mom now but would love to get back out into the work place part-time but I cannot be depended upon. It's awful.  I feel so helpless. Can people who aren't currently working apply for disability for migraines?

Susan
Susan
8/10/09 3:40pm

Dear Shoshie,

 

Thanks for writing.  It sounds like our migraines are originating in the same area--neck, trapezious, base of skull.  It seems like the pain just progresses from there.

 

Taking care of yourself and your children must be quite a challenge when you are dealing with migraine pain.  And part-time work could be tricky--no way to schedule a migraine attack.

 

Good luck with looking into disability.  I know I don't qualify even though I was full-time because I worked for the state, but didn't put in enough time for a state retirement/disability (and therefore never paid into social security, so this would also not be an option for me).

 

Take care.

 

 

Dutchess
Dutchess
8/10/09 9:59am

I'm fearing the wrost myself.  I am 42 and never had migraines before and was confined to bed for 2 months. I thought I's never go back to work but, I still have so much pain at work. Just started this new job and even though it is a sit down job I'm scare I'll lose it. Can't imaging how that may feel, but I do understand. Just hang in there!!  Keep talking, it helps to get support and talk here.

 

Dutchess

Susan
Susan
8/10/09 4:02pm

Dear Dutchess,

 

I've never heard of starting migraines at 42--who needs that?!  What a killer of a migraine you must have had to be bedridden for two months.  I can't even imagine. 

 

As for your new job, sitting down won't keep you from getting a migraine (I don't believe standing instead of sitting is a trigger), and I know that just sitting down doesn't alleviate my migraines, either.  If you want to try to escape a full-blown migraine episode, it's imperative that you take the proper medication at the first symptoms, and do whatever you need to do to interrupt the cycle (whether it's lie down, dark quiet room, etc.).  Even if you do all these things, there is no guarantee that you won't still be sidelined by a full-blown attack.  Sometimes nothing helps.  That's when rescue meds (used sparingly) can be a life-saver.

 

Working with so much pain is wearing, and I know because I did it for almost a year after the car accident.  But that was my limit.  By then I was falling apart.  I believe that by continuing working, instead of addressing my pain issues, I actually made things worse.  Don't let this happen to you.  Get the proper medical care and guidance that will allow you to live without pain (or at least make the pain more bearable).  No one should have to live and work with such pain, so be sure to make taking care of yourself the priority.

 

Take care.

BRKyle
BRKyle
8/11/09 11:45am

I abhor the "what do you do" question just as much as you do and for the same reason.  Among other things, I am disabled by migraine and fibromyalgia -- I can't sit and look at a computer screen for more than a couple of hours at a time without a headache coming on.  I take several medications (topirimate being one of them, for migraine and mood stabilization; I have noticed little difference between the brand and the generic for my case, luckily), and also use physical therapy and acupuncture when I can find a reliable therapist. 

 

I will not, however, be defined as "a disabled person'.  I am a person first, I have many things to offer, and refuse to be marginalized or ignored just because I can't do 8 hours of work in a day.  I have two children, each with special needs, and believe me, they're a job in themselves.  I read, I do some podcasting and some writing, and basically try to keep my head above the BS that folks throw at 'disability' and all that rot.  I worked with folks with profound disabilities, and one thing I discovered is that we are all human.  I wish other people would remember that.

Susan
Susan
8/11/09 12:17pm

Hi BRKyle,

 

Thanks for responding.  The computer issue is one I am going to try to resolve with a glare filter, though I haven't had much success in finding one to fit my screen, the one's I've found online seem to be made for ones much larger.  But the hunt goes on.  I can only hope it helps, it's certainly worth trying.

 

I can't imagine the time/energy/commitment/etc. you must have with two disabled children. And to take care of them with your own challenges--medals should go to people like you.  When it comes to taking care of our children, there's no such thing as calling in sick.  When I would teach at the college (some of my students were early childhood ed teachers during the day, students at night) I used to say there is never really a "break" from caretaking because you can't take the children's batteries out and put them on a shelf.  As a parent, you are on call 24 hours a day, regardless of how bad your pain might be.  Do you have help at home?

 

I, too, try to focus on what I can accomplish, though when things get really challenging it is so difficult.  Not being able to have a reliable schedule of times when I know I will feel well enough to accomplish something is so frustrating.  And the isolation is a burden.  My world, at times, feels so closed and limiting.  But I do what I can.  And sometimes I overdue, and then I pay the price health-wise. 

 

I also like to read a lot, which is so difficult, if not impossible to do at times with migraine.  I have had the same book on my night table now for three months--it's getting to the point that every time I can pick it up, I have to re-read what happened already to even get a clue as to where the plot is.  Then, I haven't been able to read for very long (June and July were really rough months for me--pain wise).  I, who used to finish most books in a sitting or two.  Oh, well.

 

Finding things to do while in pain is a challenge.  I can't lie down with a migraine (the throbbing gets too intense), so I do end up watching more tv than any one person should have to bear.  I end up folding a lot of laundry, and generally just doing "picking up" types of things--not much fun, but it keeps me from going stir-crazy.  And keeps me from driving my family too crazy, though I do that, too. 

 

Well, my computer limit has been reached, time for a cool cloth on the eyes/forehead.

 

Take care.

Lisa
Lisa
8/13/09 12:34pm

Hi Susan,

   I was fired on July 6th this year due to my migraines. I have had migraines for most of my life. When I had my last child (I have 5 of them) they became strong enough that I needed preventative help. However, they were pretty well controlled with medication for about 14 years. Over the past 2 years though they have become uncontrollable again.  I started seeing a new neurologist/migraine specialist in December 2008. He decided to change all my meds, preventative, abortive and no rescue meds. He was concerned about medication overuse headache. But, the constant pain that came with the change caused me to miss too many days at work. I used up all FMLA and even asked for ADA accommodations because I loved my job. I worked hard to get to my position.

   I didn't just lose my job....like many of our fellow migraine sufferers, coworkers, friends, even family members don't understand and slowly they distance themselves from us in one way or another. When I ask my husband what he thinks I should do he just answers I should get another job.  He doesn't look at my migraines as a disability and definitely doesn't want me to go on SSDI. It has such a negative conotation in his family.

   I am seeing a lawyer right now about my job so we will see where that takes me. But the experts on this site have a lot of insight and can be a great place to vent when you feel alone! Good luck with your pain and keep in touch!

Lisa

Susan
Susan
8/14/09 12:26pm

Dear Lisa,

 

Thanks for writing!  Wow, what a fantastic and challenging life you must have with five children.  When I was growing up, having four or more children was the norm in our neighborhood--lots of children to play with, all the time.  Lots of great memories.  Now families tend to be smaller, and I always smile when I see a family with lots of little ones.  But it must make suffering with migraines that much more difficult--or are the oldest able to amuse the youngest for a spell so you can catch your breath?

 

Having also had migraines most of my life, I know how difficult it can be to see them escalate.  Bad enough when they only come once in a blue moon.  Did your new doc help you get to the point where you can function?  I can't imagine not having any rescue meds at all.  I am very strict about where/when/how often/how many meds I can take--but know that for them to work (and not get rebound), I can only have a few pain-free days a week.  But on the days I do use rescue meds, those pain-killers are invaluable, the pain is that bad. 

 

Having chronic migraine most certainly is a disability--I know because I am living it now (as it sounds you are, too).  You cannot predict which day/hour/minute you may be able to function well.  This has been a particularly bad summer--June, July, and this far through August I've had enough "good" days to count on one hand and still have fingers left over.  I think your husband's comment to "just get another job" is unrealistic.  The same circumstances that kept you from being able to keep your first job still exist.  Any stigma your husband's family may hold about SSDI may be up to them to reevaluate.  You cannot base your decision about what you can or cannot tolerate (physically and emotionally--migraine takes a toll on both) on family members' opinions.  You know what you feel up to doing.  You know your own limitations.  Please respect them, and prioritize yourself, because it is the only way you can get well and stay well. 

 

Good luck with your lawyer, and I hope things work out with your case.  You are right, this site should have some insightful suggestions for you.  People with migraine who have been in your shoes, and have also lost their jobs should be a wealth of information.

 

Take care.

 

musibeth
musibeth
8/13/09 1:47pm

Wow!  I think I could have written your post.....Over time, due to MVAs, illnesses, and a visual processing disorder my migraines have become 4-6/week.  By far the hardest was not being able to work.  Work was very defining for me, and now who am I????

Then ppl start asking where I was working, and I had to go into the whole thing, Can't work now; been really sick; constant migraines.  And then the worst comment ever, "But you look so good!" Yell *&$@#&!!!!!

My college friends slowly drifted away.  They were all so busy with this and that, and when they called to see how I was, it was this awkward, Well, I had a really good day last week, made it to WalMart..... Yeah, it was *uncomfortable*, you could tell they didn't know what to say.....I don't know what to say either, a 24yo shouldn't be a shut-in!

Good luck to you....if it helps, you really aren't the only one in this dark place......I've done well by taking up crocheting for charities, gives me a really neat answer to, 'so what do you do?'

Susan
Susan
8/14/09 2:55pm

Dear Musibeth,

 

Thanks for writing.  I, too, find it difficult not to be working, and still, to this day, defining myself as a college professor.  Though, since it is impossible for me to work, I actually haven't done anything professorial in four years (has it been that long?).  I especially miss this time of year--by mid-August I'd be getting things ready for my new courses, prepping my classes, getting my office re-opened after the summer break.  I'd actually lose sleep before the first night of school.  I miss my students, and nurturing them through another semester.  Oh, well.  Eventually, I'll adjust.  To not being a professor.  Some day.

 

The "what do you do with yourself" questions can be awkward.  After all, when you have so many migraines a week (4-6 is a lot, especially when there are usually also symptoms before, and after), and you're in so much pain, accomplishing anything must seem like a miracle sometimes.  And having your college friends drift away must be especially hard, just when you could use their support and understanding.  I guess that is what this migraine community understands most, how it is to truly live with migraine disease and all it entails.

 

It's great that you can work on a project that lets you contribute to charity, yet lets you work at your own pace.  And doing something you enjoy that is productive helps the soul.  And projects like that are great because you can actually see that you are creating something--actually see yourself making progress.  I myself started knitting a sweater last spring.  Though I haven't picked it up in months because June, July, and the beginning of August were killer months for me, pain-wise, and just looking at the knitting stitches made my vision go wonky (why did I choose to start an Irish-knit pattern?).  But, I will get back to it when I can.  Goodness knows, it's not going anywhere, and it's certainly not going to get knit on it's own.

 

I completely understand what you mean when getting out to run an errand can be considered a major accomplishment--boy, have I had my share of that (actually, I've had a summer like that).  What can be such a major accomplishment when you are so sick with migraine disease can sound so trivial to others.  But, with migraines like you have, getting out is a major accomplishment.  Yes, I definetly understand.

 

Take care.

 

MaggieMay
MaggieMay
8/13/09 2:51pm

I totally understand.  Have you tried to get on Social Security Disability?  I've been on it for a year, due to a combination of depression, migraine, and a disease called adrenomyeloneuropathy (a vanishing white matter disease).  It helped that I was fired because I "lied" on my timecard because I was on migraine painkillers at the time I filled it out.

 

I'm happy to talk to you at any time.  I also find a social stigma around being on Disability.  It's like people treat me like I'm an invalid (which I'm not, but I do use a cane sometimes).  But when I use my cane, people treat me like I'm not supposed to be using it, like I'm too young to be an invalid. 

 

Let me know if this helps.  I'm trying to be helpful.  Take care of yourself.  You're the only you you've got!

Susan
Susan
8/14/09 3:19pm

Dear MaggieMay,

 

Thanks for writing.  That would be a great suggestion, but I'm afraid I don't qualify for SSDI.  After college, I worked for the state of MA, which means I only paid into the state retirement system, and didn't pay into the social security system.  Unfortunately, I was also disabled before I qualified for state retirement!  I did pay into social security back when I was working during high school and college, but not enough to qualify for benefits.  So, here I am, at 48, unable to work, and no social security.  No retirement.  It's too depressing to think about.

 

I do also understand the stigma of not working, and the difficulty of suffering with a disability.  From what you describe, it sounds like you can't "win" either way, whether you use your cane or not.  People (some, not all, thank goodness) tend to judge other people, and goodness knows how, but they then decide for themselves whom they consider disabled or not.  Go figure.  I know that looks can be deceiving.  Unless I wear my collar, I don't "look" disabled.  Truthfully, sometimes I don't use my collar when I really need to, because I don't want to draw attention to myself (vain, I know).  But, I also don't get out much, so wearing it at home is no big deal.  I also have to sleep in it every night (oh, joy, how attractive that is!).

 

Well, my computer glare quota has been met for now (I'm looking into a screen to filter this and hopefully that will help me extend my computer time).  It was wonderful of you to offer your suggestion, and I appreciate your thoughtfulness.

 

Take care.

 

jujuhappybee
jujuhappybee
8/13/09 5:33pm

I am sorry to hear about your situation but I am in the exact same one. The car accident threw every nerve and muscle out of whack. I finally went to a chiropractor for a month every day and I was able to stop dragging myself around. I went to the kind of practor that jumps right in and gets the job done. I just came out of the hospital with new meds and I feel better.

I am still very confused, can't concentrate, constantly trying to remember my meds, no social life, no love life just my two pets.

This disease is a monster but because we don't have a "cast and crutch" around our heads everyone thinks we're OK. We are not. It is horrible.

I cry from so many treatments, the depression, I don't even comb my hair.

I have no job, no money and I don't know what to do.

I used to be a make-up artist and do make-up for television and film. It was great until the sudden onsets started to mess up everything.

I won't go on and you don't have to answer but just know that there are many people who are suffering in silence because there are no words to describe what is happening.

Take care and trust God to help you.

barblovesroses
barblovesroses
8/13/09 9:02pm

Hi Everyone,

I too am seeing myself in just about everyone's comments...My story is that I was dealing with the occasional migraine - one or two a month that was easy to control using imitrex (once i finally got it diagnosed correctly and prescribed the correct medicine but thats another story in and of itself)...then i had a hysterectomy in February of 2000 and following it I found myself having migraines 4-6 days a week.  My doctors and I tried everything we could hormonally to see if we could get the migraines under control and I was so grateful that I had imitrex to abort the migraines so I could go on with my life...but about July suddenly imitrex stopped working for me altogether...and my life became hellish.  I had just taken on a new job as a food buyer for a major wholesale food distributor and my career was on a high track but my health was on a major c(ollision course.  By November I ended up resigning from my wonderful new job so that I could try to get my health under control and my doctor referred me to a neurologist finally for the first time to try to do something about the migraines as he was baffled by them.  Over the next year it was a time of trial and reject various medicines, medical tests and much frustration but during that time I not only confirmed the migraine diagnosis but also received two other major diagnosis which affect my life in major ways today yet - fibromyalgia and sleep apnea.  After a year of hoping to find a medicine routine that would return me to a normal life (ie - get the migraines back down to 1-2 a month) and failing to get them even down to 3-4 days a week, I gave up and talked to my doctors about applying for social security disability and they supported my doing so (it took me 3 years to get it and I had to go to an administrative law judge in order to get it - I understand that its much easier now a days for someone with fibromyalgia than it used to be).  How do you work when you never know when you are going to have a disabling migraine hit you?  how do you schedule your work life around one?  Its not fair to an employer to have an employee like us who may show up one day a week and be sick the rest of the time and there are darned few jobs where we can stay at home and work on our own schedules.  As Teri Robert said, she is very fortunate to have the job she has where she can make her own schedule and if she feels bad she can go lay down when she needs to...but most of us are not able to do something like that as employers expect us to be at our desks during certain hours, not at home sick.

 

As to the inquiries of others about what we are doing with our lives now instead of working, yes, its awkward, however, we are now disAbled due to our severe migraine disease, but we do have ABILITIES we are using in our lives to make our families better and happier even though we are not well and in many ways there are special things we are doing for our families now that we were not able to do when we were working.  I highly recommend that you get involved in some kind of volunteer work outside your home even if its only one day a month because it will make you feel that you are still contributing to society in some way and you will be helping someone who might be in a situation worse off than you are yourself.  Most larger communities have Independant Living Centers in them for people with all kinds of disabilities to get information/assistance/referals and they can always use volunteers plus you might make some great friends amongst the disabled community.

 

Today I am down to having migraines 3-4 days a week and my life is not where I'd like it to be yet, however I recently moved from the pacific northwest to Ohio and even got married again so I am having more of a life than I ever thought I would back in 2000-2004 time frame when my life was totally miserable and really out of control.  For me, taking my meds is a must, getting my sleep is also a must, and pacing myself(which is a real struggle) are amongst the most important things I have to do to help make sure my health is reasonably stable.  If I let these 3 things get out of whack, I get into trouble with my migraines and my fibromyalgia and I am miserable once again.

 

I don't so much mind the questions about what i do anymore...as I am happy with how my life is headed considering how much its improving over where it was...I may even go back to working on a part time basis down the road...who knows??? 

 

I wish all of you pain free days!

Barb

Susan
Susan
8/14/09 8:50pm

Dear Jujuhappybee,

 

Thank you so much for taking the time to write.  It sounds like you need to be wrapped in soft cotton batten with and extra dose of TLC after what you've been through.  You are so right about not having a "crutch or a cast around your head"!  Having an invisible pain/disability/injury makes it literally unreal to most people.  What is that all about? 

 

I understand how difficult it can be when you are so sick you can't work, can't get out, can't do things, can't, can't, can't.  It's so isolating, and that's so unfair.  I guess that's why this migraine community even exists--there are other people like us out there.  We are all existing, as best we can, with this horrible, hidden (to most people), affliction.  Migraine, and all the associated medical issues (mine are neck-related), are so misunderstood by so many people.  The pain is so real, and so severe, even if I look "normal", I feel worse than most people could imagine.  And that's both physical and emotional pain.  It's so draining to be so sick all of the time, and so discouraging.  I know I just get so sick of being sick.  Day after day.  And where do the days go?

 

And I know that pain has an effect on your brain, how well it works (not well at all when overwhelmed with pain signals), how negative an impact pain has on your mood and emotions.  It just snowballs.  Pain just seems to cause more pain, it's true. 

 

Thank goodness you have your pets.  They are so unconditionally loving.  I have a dog, Annie, that I love dearly.  She is my shadow when I don't feel well, and it's a comfort to have her near.  At 10, she's a veteran of keeping me company when I have a migraine.  Since the car accident, I haven't been able to walk her as much, but I know she understands.  She can sense when I'm having an especially painful day and stays close by.  She does help with the isolation--goodness knows, I talk to her as though she is a person and not a pet.

 

Just know that there are so many options still yet available to help you.  There are medical centers that specialize in pain management.  There are migraine centers.  Once your head clears (literally and figuratively) you will be able to decide on a course of action that can help you.  In the meantime, remember that others have been where you are now.

 

Take care.

Susan
Susan
8/15/09 7:25am

Dear Barb,

 

Thank you so much for writing.  Sharing about how you were once where I am now makes it seem more like a journey--not the dead end it sometimes feels like when you are in the thick of it.  Being stuck in the pattern of pain, can't, wish I could, but can't, can seem so never-ending.

 

I'm still in the grips of working on getting my symptoms under some sort of control--in some pain every day, horrible pain others.  Like you said, completely unpredictable.  But I truly believe what you said about respecting your limits, knowing what you need to do, to pay attention to the things that keep you healthiest.  I guess prioritizing myself that way is my most difficult challenge. 

 

I keep trying, but keep getting sidetracked by things I think I "should" or "need" to accomplish.  Then I end up overdoing, making my symptoms worse, feeling miserable with pain.  And for what?  What is your method for keeping yourself in tune with your health, and not overdoing?  Any tips or reminders that help to keep you present and focused would be appreciated. 

 

I tried meditation, which I did faithfully for a few years, but slowly put if off for "lack of time" (must have had laundry to fold, or something :), and now haven't practiced for months.  I guess I just don't have the patience to sit still sometimes when I'm in pain.

 

I know sleep is also a huge contributing factor in how well I face the day (or not).  With the neck pain waking me at night, I take super strong muscle relaxants at bedtime, with a prescription sleeping pill, and that helps.  But on the nights that doesn't do the trick, the next day is definetly impacted, big time.  My stamina just withers.  Getting your sleep apnea diagnosed must have made a huge difference for you. 

 

I'm so happy your life has taken this new, wonderful direction.  Congratulations on your new marriage and your move to a new area.  And I'm sure that as hard as it was to leave your old job, you just can't keep a "normal" career going while dealing with such debilitating health issues.  And you are so right, about being able to take the time now to do things with/for your family that you otherwise would not be able to do if you were away at your job all day.  That time is a gift, and when not in the throes of a migraine, it is those moments we live for--to take joy from life and enjoy our loved ones.  When your health improves enough, and when the time is right to re-start your career, you will know.  I really enjoyed your post.

 

Take care.

Susan
Susan
8/15/09 7:28am

P.S.  Couldn't forget this--loved your screen name Barblovesroses.  How glorious!  Sounds like Barblovesroses is blooming now.

barblovesroses
barblovesroses
8/15/09 3:25pm

Hi Susan,

 

Thanks so much for your caring reply.  I can see you are really spending a lot of time in your thoughts about how you are replying to each person who does post to your inquiry and I know it means a lot to me, as I am sure it does to each of the rest of us who is answering your query.  I can tell you have a very loving personality and that in and of itself has to be a great gift to your family and friends, and when you are feeling good and able to give of yourself, it must be truly special to be around you!

 

The hardest thing for someone with fibromyalgia to learn to do is to pace themselves.  I don't know if you are aware of it or not, but in addition to the everyday muscle aches/pains approximately 70% of fibromyalgia patients also suffer from either migraine or tension headaches on a recurrent basis (source - fibromyalgia network pamphlet "Fibromyalgia --Its Real a patients guide").  Its a trial and error thing.  They tell you to take frequent rest breaks when you are up to working on things around your home, not to just keep at it because its almost done because that attitude is what is going to cause you to go into a flare up, and yes, it is going to.  So, work 15 minutes, rest 15 minutes, then go back to working another 15 minutes.  It may take longer to get the job finished, but you will not be as exhausted or in as much pain when its done. 

 

They also tell us to exercise regulary - however someone with fibromyalgia can't go at exercise the way a normal person would because normal exercise would send us into major flare up.  We have to go at it in extremely slow increments and very gradual increases.  We can't just go to a gym and go thru a workout with a regular class, especially if we are starting out on an exercise routine.  A number of years ago I attended an exercise class especially designed for people with fibromyalgia and went thru the workout but instead of just doing a few of the exercises and stopping, i decided I'd keep up with the class who'd been at it for quite some time...I managed to keep up with the class, but it was over two weeks before the pain flare up subsided.  I don't know if you have fibromyalgia, but when you are not dealing with migraine pain, you should try to get some exercise in, even if its walking around the block where you live.

 

Another thing I've had to sit down and do with myself is really look at how important a totally spotless home is to me...does it really matter how clean my home is or does it matter more that I've been able to spend time with my family doing something we all enjoy???  I think in the long run the time with my family is more important than the spotless home and I've never been known for a super clean home anyway so whats one more day of a little more clutter.  I'd rather have my family remember the times I spend with them laughing and having fun together than me cleaning and stressing over a cluttered slightly dirty home and then me being in so much pain that I couldn't join them for fun family activities.

 

Another part of pacing involves not overdoing it when I do have good days and for me this has been a very difficult one.  I tend to go out running errands and be gone all day and come home exhausted...then I'm down for then next 4-5 days because I over did it on my good day.  Major no-no for me...but I still find myself doing it.  I'm learning to use the electric carts when I go to places like Walmart because I do like to go all over the store to see what I need and sometimes what i need is spread all over the store...  I have been fortunate in that my doctor's have given me authorization for handicapped parking permits so I don't have to walk as far in the parking lots to get to the stores...but I have found that I avoid MALL shopping like the plague - they are just too large and too tiring for me.  If I have to go to a mall, I go to a specific store in that mall, get in, get out and avoid window shopping except for on the way to the store I need to go to and back out of it. 

 

This may sound kind of harsh, but those of us with illnesses get so wrapped up in whats going on in our own lives that we can't see whats going on around us...we need to take time to get involved in the lives of other people to help someone else in some way which is why I suggested volunteering in some way in my previous post.  When we can see that others have things happening in there lives that are so much worse than what we are dealing with, somehow our problems, no matter how bad they are, suddenly seem a little easier to deal with because we realize that our own situation could be much worse than it is and we could be dealing with what so and so is dealing with on a daily basis and suddenly we are starting to count our blessings...

 

These are a few of the things I am doing that help me to deal with my daily pain issues...they are among the most important ones I feel - and I hope that you can put them to some use in your life too.  Yes, I have been very fortunate in finding a wonderful man who loves me for who I am despite my health issues (my first husband left me because of them) and having a new start in life with him and I am so grateful to God for putting me together with my husband.  Despite fibromyalgia and migraines and sleep apnea, life is looking up

Susan
Susan
8/15/09 8:01pm

Hi Barb,

 

Thanks for all of your kind words--you gave me a genuine smile.  So sweet of you to take the time to share your suggestions, I can use and appreciate all of them. 

 

The exercise one is a definite to-do on my list, I know I feel better once I get over the "hump" of getting used to exercising again, and this is the tough part:  sticking with it consistently.  But you're right, it is especially important for people with pain issues to exercise consistently, it keeps those endorphins and other good brain chemicals pumping.  The benefits long outlast the exertion.

 

Keeping the house neat is my archille's heel.  I was raised as the oldest child, only girl, and I was always responsible for picking up after everyone else, all the time.  It's like it's programmed into my genetic code or something.  But I am trying to learn to let things slide in two different circumstances.  One, when I'm sick, I tend to overwork, just to take my mind off of the pain.  Need to learn to respect the pain, not make it worse, and take better care of myself.  Secondly, I need to do as you suggest--let the picking up go and replace it with much more important family time.  The messy house will always be there, my family may not always be together like we are now.  My boys are 17 and 28, so I feel fortunate when they do want to spend time with their mother.  And to me every moment with them is so precious and I treasure it.  With my husband, we don't spend much time together, so making the effort to do so could only be a good thing.

 

I don't have fibro, but the concept of pacing myself, and not rushing to get something finished, whether I feel up to it or not, is another one I will definetly use.  This one is totally new to me.  Taking breaks during a project is something I've never done.  I'm more of a full-steam ahead type, who wants to just get it finished no matter if my migraine is getting worse as a result.  Now I know better (should have all along, really, it's common sense).

 

The volunteer work interests me.  I was once a court-appointed guardian ad litem when we lived in Florida.  I volunteered to represent the interests of children who were abused, or at risk of abuse, as they went through the court system.  To this day I still worry about how these children managed after I was out of their lives.  My volunteer work back here in New England has involved helping with community gardening projects, but nothing major.  My "good" days have been few and far between this summer, hopefully a cycle that will break soon.

 

Barb, thanks again for the pointers, and reminders that basically, taking care of our health, and learning to prioritize what is important in our lives, should take precedence when we are dealing with a debilitating illness.  Good lessons for us all.

 

Take care.

 

 

Headacut
Headacut
8/14/09 12:11am
Susan, Boy no one can relate to what you are saying I don't know why you even bother to post anything. Seriously now I thought your post said everything I've felt at one time or another but as usual you seem to put the words to ink so much better than I can. See that Harvard education is still good for something its good for saying what we all want to say in an eloquent way. You make us proud. As far as what to say to others: 1) I’m a trophy wife I like this one for you. You look great and defiantly can get away with this one. 2) I’m taking a sabbatical to do some very intense deep research into how far one can go into the depths of hell . . . . oh oh I meant to say into the mental, emotional and physical effects of chronic daily pain. When I have completed my research I will create a whole new course to teach other health care providers how they can provide the best of support especially in regards to dealing with isolation etc. . . 3) I'm writing a novel. They will ask "oh about what" so have an answer ready. I actually used this one myself in a low moment. My hubby's ex best friend came out to visit to MA with his cute little 10-year younger wife. This was not a good reunion for me because I had dated the guy before I met my husband and over the five years since we had seen each I've had come to gain weight from the preventatives, been finding it hard to get pregnant and had thrown in the towel on being able to hold a job. Meantime our friends were now getting ready to pop out their fourth really cute child and kept telling us how the wife will quickly be down to her 90 pounds within a month of delivery and how well her spray tanning business is doing. They proceed to ask the dreaded question "by the way Headacut what have you been doing? " Before I realize what's coming out of my mouth I declare "I'm writing a novel." They ask oh . . . What about??? Trying to trip me up they were. I respond "Well I guess you will just have to wait and read the book when it comes out." Personally I think you should actually do number 2 when you conquer the migraine demons. Wouldn't you be in an awesome position to do something like that? I went to a wonderful therapist to work out some childhood issues (won't we do anything to see if it will help with our disease?) I really loved the therapist and the experience but in the end she didn't quite get why I felt I was too disabled to work. I described the last time I had worked I had the easiest of jobs (my friend got me a job with her at the county elections office so all I had to was swear people in and enter their data in the computer). The job was rewarding in that in its way I was helping people who actually were excited to do something for the first time vote and it was fun working with a friend and in a friendly office. Still everyday I would drive home with a raging migraine and quite often have to pull to the side of the road to throw up in my own lap. I would then precede home go to straight to bed barely be able to get up in the morning to start all over again. I basically went to bed Friday night and stayed there till Monday morning to start it all over again. After seeing me do this for a month my hubby and I quickly decided it just wasn't worth it. We added up the extra medical visits and meds and gas etc and we were actually losing money anyway by me working. I told the therapist this story but she just didn't seem to fully get that migraines can be such a dehabilating disease. Add another to the list eh? Maybe we can just sound wise and just say to people when they ask what we're up to "I'm living in this moment" or something profound, mysterious, and elusive. Headacut
Headacut
Headacut
8/14/09 12:22am
Dang it did it again took my spacing out can we edit after we send?
Headacut
Headacut
8/14/09 10:22am

WEBHOST

 

if do one has answered my individual post here and you can easily delete it go ahead and I will resend it with spacing so I don't give Susan or others a migraine when they try to read it.

 

Thanks HeadacutLaughing

Susan
Susan
8/14/09 7:52pm

Hi Headacut!

 

Talk about a dysfunctional migraine--I was just about ready to give up on feeling semi-functional (I almost wrote semi-normal, but can't say I've ever been that).  I've had such a bad week (wait a minute, it was June and July also, and the beginning of August,too).  When is this horrific cycle ever going to end?  What is going on this summer?  I don't know if it's the weather, the mold, the whatever, but I've had enough...Anyway, enough bellyachin' from me.  I thank you for letting me get it out of my system.  Sorry to hear you had a bad time last week (I guess we can be our own mutual-aid, sympathy, pity-party partners).

 

The hubby just left to take our youngest (he's 17 now) and his friend to an action flick.  No, thank you, I don't want to go (who needs the noise--the movies are so loud these days, especially with the surround sound special effects).  Now I can take a breath, and have some peace and quiet to write (why is it my husband starts conversations with me while I'm typing--does it look like I can think, type, and carry on a conversation while juggling post-migraine pain?).  I know I look like Super-Girl (with the cape and all), but I'm not. 

 

By the way, speaking of movies, we saw Julie and Julia last week, thought it was great.  For ages now, on every August 14th, I drink a glass of champagne in honor of Julia Child's birthday--what a coincidence that the movie is out now (of course, now I'm sharing one of my quirky habits--I celebrate everything, the good stuff, anyway.  Can't have too many celebrations, I say).  Quite an unusual woman.  Saw her speak once at Boston University at a cooking class, and thought she was quite a character :)  And French food--yum.  Some of it I'll take a pass on (the gamey stuff), but I love escargot (they do have them at The Red Lion, come to think of it), love the rich French sauces (don't love the time it takes to make them, can't do that anymore with these migraines), and love the time the French take to truly enjoy their meals (no rushing for them, they take their time eating and enjoying the company, a meal to them is savored).  Maybe we as Americans should slow down and savor more (really, I guess, I'm thinking of myself here).

 

I used to love cooking, and learning how to cook new things.  Did you grow up in a family that did a lot of cooking?  My mother specialized in two dishes: one hot, one cold.  One bologna sandwiches, the other fried bologna.  No kidding.  And the funny thing was, her mother (my grandmother) actually did go to Le Cordon Bleu cooking school, and even used to warm the dinner plates in the oven before serving hot food on them (used to drive me crazy as a child--why couldn't we just eat now? I would think, who warms plates, is my grandmother crazy or something?).  I used to do a lot more cooking before the car accident and migraines took over.  Now the only time I eat anything elaborate, I have to order it from a restaurant.  Once I even tricked my husband into going to a cooking class with me, but that's a story for another time.

 

So funny to hear about pampering your roses in Colorado (most roses even have to be babied here in New England).  I can feel your pain, and appreciate your enthusiasm.  I can understand how it is easy to get carried away putting in gardens--then learn the hard way how much time and work goes into maintaining those very same gardens (I'm in the same boat now).  Wildflowers, yes, that's what you called them :)  What we don't go through for our gardens.  Like you, though, I love gardening, and can actually get outside of the pain in my head while I also get outside in the fresh air. 

 

Gardening in Florida was completely different.  Like would you believe you chose plants by how slowly they would grow, because the growing season, is like, forever?  The lanai around the pool (the screened in room) at some of my neighbors houses had plants that would burst through the two story tall screening!  The hibiscus bushes would grow so tall they would obliterate the window view if planted underneath (in one year).  Like I said, completely different.  Here in New England, our growing season is so limited, I plant things that I know will (or hope will in this rainy summer) bloom before the first frost.  So far this year I've netted one (yes, that's a #1) beefsteak tomato.  But the joy of eating that first tomato sandwich is a joy like no other.  A true pleasure.

 

The headaches in Florida were actually not much different than here in MA (manageable at that time) though I did acquire many more hats (the sun in Florida is turbo-strength most of the year).  I guess I collected hats the way some women collect designer shoes (I own over a dozen grand ones still, gave several away), now mostly kept in tissue papered hatboxes downstairs.  I just don't dress up and go out like I did in Florida, and now I only wear hats at special events (now few and far between).  Actually, I miss wearing hats, but my youngest will be graduating high school in two years, so I'll be hat-ready when the time comes.  Or maybe I'll throw a tea party for myself and put a hat on for the occasion? :)

 

I liked your suggestions for the "what do you do?" inquiries.  It's funny, now that I think of it, because some of the people I see (like the woman I see all the time who works at the bank drive-up window) don't know I'm not still teaching.  Even after being away from work for four years now (is it that long?), she'll say "I like your blouse, are you just coming home from work?", and I'll say no, but then never explain: no, I'm not working now because blah, blah, blah.  I'm sure the people behind me at the drive-up would just love to wait for that conversation.  I'm sure they have all day.

 

Actually, I was thinking of bank-lady today, because I did see her (though today I was inside the bank), she did say that, but, again, I just said, no, I'm not on my way home from work.  I just don't want to go into it, I guess.  Maybe next time I see her I'll just tell her I'm "taking some time off" and be done with it.  But when I saw her today, I did tell her to have a glass of champagne.  For Julia Child's birthday.  Have to be a bad example, sometimes :)

 

Actually, that glass of champagne sounds good (it's my drink of choice, actually).  And in reality, I'm going to pop the bottle now before I get too tired to drink a glass (I got up early today for an MRI of my brain at Beth Israel Hosp.--not a great way to start the day, but we did beat traffic).  I have chilling at this moment a Veuve Clicquot Ponsardin (no, I didn't have this memorized, I had to go look), which I've tried before and is delicious.  So, here is a toast to Julia, and my new friend, Headacut.  Cheers.

 

Take care.

 

 

 

Your koi pond sounds unbelievable.  You must really enjoy it--amazing having all those little goldfish grow up and still be there after all this time. 

 

 

Anonymous
headacut
9/ 3/09 2:16am

Susan,

 

Was rereading your post and laughed.  I forgot about the plate warming habit of my step grandmother.  I thought she was the only one who had come up with that one.  But you know there has been many a cold day here in MA in our old house where I've thought dang that food got cold too quickly and I thought I should have gone to the trouble to warm those plates like my martha stewart grandmother.  I have even gone so far as to research and found my next range/oven which comes with a lower plate warmer drawer. hee hee!! 

 

Another joy from going to PT was the inevitable question from each therapist "so what do you do for a living?"  Just when I think I'm okay with not working here I go again feeling like a looser saying I just a sickee and just wake up most days hoping I'm not in pain.   Then one of them just can't resist well what did you use to do?  Probably she is just trying to think of pleasant conversation or something but I just don't want to keep going there as she keeps proding me for more and more details as its not really pleasant or relaxing for me to keep trying to explain to someone in five minutes or less what I did for a living or how I got where I'm at.  Kind of like the bank lady for you I guess right?  Seems like we can never get away from the question no matter where or what we are doing.

 

Headacut

dlmw_58
dlmw_58
8/14/09 8:09am

Hi Susan, I would say welcome to my world if it were a good world to welcome you to...but as a person with migraines and other health problems, it's not a world of fun and enjoyment.

 

Boy, do I hear you. I have not been able to hold a job, any job, for any length of time...even when I get to know the people very well, they still have a 'job to do' and it usually means letting me go.

 

How to deal? I honestly don't know the answer to that one. Giving up the very things that make life fun and exciting doesn't make for a happy ending...although I've somehow managed to come out of the daily headaches, or at least they are not the ones that put you to bed anymore...the migraines just come and go and I have finally decided they are not worth fighting...so I go lay down and take care of it...most times.

 

Early on when I was just starting out in life, I started colege and took legal secretarial courses, then switched to business administration...dropped out of colege to go and work in a law office...which you guessed, missed too much work and was let go...and that was just the start down the path of life.

 

Worked at department stores, which made the migraines worse, tried to work in a office environment which really did not work out...computers, noise, lights...not good.

 

Worked for myself, designing childrens knitwear and selling it but that took off too large for me and the demands became too large...young and foolish, instead of hireing people to help, I folded!

 

Decided in my early 30's to go into hairdressing which my family doctor had shook his head and discouraged me from it big time, but being stubborn as I am, I went ahead with it. Pushed myself beyond reasonable limits, well actually most times it was the demands of my clients who pushed me way past reasonable limits...working with a migraine, upchucking in public and continuing to cut hair after rinsing my mouth out and spraying something to take the smell away...and the clients kept insisting that I continue to finish my day as they were booked in and had all important things to do with their new do!

 

Worked at that until my neck and back gave out, had surgeries on both wrist from doing repeatative work, and the final straw was not being able to get out of the car after a full day of work and having to crawl into the house and it came to me...what in heck are you doing it for? What are you proving? No benefit to me anymore so it was time to give up something that I truly did enjoy...and some would even say that I was good at it!! lol

 

My clients gave me a hard time when I informed them that I was no longer going to do hair. Each and everyone of them insisted that I just keep them and continue doing their hair...had over 100 clients, regular clients...so it made me laugh that each one of them felt they were the 'chosen' one, the 'special' one...

 

Today, I am like you. Home, not working outside the home, don't even feel like doing the work inside the home!! lol and it's a job in itself not to feel like a useless blob. When I start to find myself crying about it, then I have to give myself a kick in the butt and look around me.

 

Migraines have robbed me of a lot of things, but there is still a lot of things I can do...mostly in moderation and maybe not on the day that I would like to do it on, but I can still do things.

 

I sew, on good days, which I would like to start selling the little things that I make...no orders, no expectations. Just make something and put it up on the internet for sale...if it goes, great, if not, sew what! (oops! did I make a pun?)...plans? I don't make them anymore...last minute.

 

Expectations? I expect the worst from people, and when I get something else from them, it's a bonus.

 

Perhaps migraines has taken away a lot from me, but at the same time I've met a friend through the internet, I believe it was Magnum, and we have corresponded for over 10 yrs now...we live far apart, but perhaps some day Geri and I will meet.

 

She is a wonderful person, who due to health problems has also given up something she loved...teaching. She now teaches piano to youngsters and is spreading her talents through them...and is doing so with basically one good arm/hand...a car accident has rendered her one arm almost useless....so if it were not for migraines, I would not of met her.

 

Keeping foccus on the little possitive things help and naturally having someone who understands is the biggest thing of all....and thank God I have Norm, he totally understands what life is all about, he understands that I have good days and bad days...and he just accepts them with no put downs, no complaints. I am so grateful for his acceptance of me and it is through his strenght that I am still here.

 

Find that one thing that will give you the desire, the strength to pull through...it's hard, but there is life with migraines, just not the one we would like to have.

 

Take care, and good luck,

Donna

 

Susan
Susan
8/15/09 11:22am

Dear Donna,

 

Thanks for writing.  What a great story to share.  You certainly tried your hand at so many different things.  Now sewing is your choice--a great one since you can work for yourself, so to speak, and be creative, and go at your own pace.  You must have a great sense of accomplishment from all you've overcome, and achieved, and seem to be in a really good place now.

 

I know I will find that place, too.  I guess I'm too stubborn to give up on the thought of going back to teach college someday, a career I found so challenging yet rewarding.  There's nothing like it (in my opinion).  Maybe, some day.

 

Meeting the challenges of dealing with my health issues now has to be my priority, and I'm trying to get better at not knocking myself out always doing for others.  Lessons still to be learned.  But this migraine community has been a great resource, and I value everyone's contributions.

 

Take care.

dlmw_58
dlmw_58
8/15/09 7:51pm

Funny how from someone else's point of view (along with several people I personally know) they seem to thing that it was something to look back on and think that I've accomplished a lot, but from my point of view, it's more along the lines that I have come up short on what I had always planned with my life...although, I much rather looking at it from other's point of view! lol

 

Looking back, I guess we just keep plugging and finding ways to make things work for us...we are one creative bunch!! no wonder so many talented people have migraines!! It's out of necessity to survive!

 

Take care and I do hope you find a way to get back into teaching...

 

Donna

Susan
Susan
8/15/09 8:12pm

Dear Donna,

 

It's a fact of life that we are often our most harshest critics.  Sounds like, as you look back over your life, you see the shortfalls, where others see your strengths.  Those strengths are real, and got you through it all. 

 

Your right about the famous and creative people in history who have had migraines--I'm always amazed when I see them listed.  My neurologist tells me that migrainours tend to be perfectionists, and very self-critical.  Also, as a rule, they tend to be a good patient.  Who wouldn't be--we all want to get better :)

 

What we don't go through, with trial and error, trying to find "what works".  Such a long and difficult process, especially when "what works" can remain so elusive for so long.  But, hopefully, we'll each find our recipe for better health, whatever that entails.

 

So, Donna, try to look at yourself from the perspective others' have:  it's a kinder, gentler one, that will serve to honor all you've survived.  You've come a long way, baby :)

 

Take care.

 

 

dlmw_58
dlmw_58
8/16/09 10:09am

You are so kind and I hope that you, in turn, do the same and find a way to do the things you love...

 

Donna

Anonymous
Matt Carter
8/14/09 8:12am

Susan,

 

I really understand where you are coming from. I've been having migraines 24/7 for the past 4 1/2 yrs. I've been to every Dr and hospital around where I live. I'm on medicine for my migraines and meds for blood pressure (which is a result of the migraines and not being able to move very much because of them) I get the looks from people when I tell them I can't work and haven't worked for the last 4.5 yrs becasue of migraines, after they asked what I do for a living!

 

On top of the migraines I am Bi-Polar with an Anti-Social personality. I've been Bi-Polar for most of my life (38 Yrs). But the Dr's I went to in the early yrs just gave me anti-depressants and sent me out the door with it'll get better. So it's been hard for me to hold down a job very long. My brothers and sister and my ex-wife (this is why she's my ex) just thought I was LAZY since none of the Dr's would tell me I was Bi-Polar. 

 

I was told I was Bi-Polar in 2003-2004 by my new wife's Psych. Dr. I can't take any of the Bi-Polar meds because they don't work. And none of the migraine meds work either. Or they work for a few days and then stop, or the side effects from the meds get me. Now the meds the Neurologist has me on is at the maximum dosage limit and if that doesn't work then he said there is nothing esle they can do!

 

I've done Automobile Bodywork and Paint off and on for almost 25 yrs. When I can do it, but haven't done any in the last 5 yrs.

 

Matt

Susan
Susan
8/15/09 11:37am

Dear Matt,

 

Thank you for taking the time to write.  Having migraines 24/7 for 4 1/2 years, wow, that is unbelievable--I can't even imagine the relentlessness of it.  I have neck and head pain every day, but the migraines come and go (although this June, July, and so far in August, they've been mostly "on").  Tough summer, for some reason.  Hope it lets up at some point.

 

Thank goodness you've finally gotten the correct diagnosis concerning your bi-polar, though it can present as depression, when only the depressive aspects are treated, your not being helped.  It's terrible that you can't take the meds--maybe some new ones will come on the market that will be more tolerable, and not have such bad side effects.  The psychiatric/medical community really dropped the ball on properly diagnosing this for a long time, though now you hear about this condition more often.

 

Between the anti-social disorder, the bi-polar disorder, the blood pressure, the chronic migraines, you really have your hands full.  And not working takes its toll, too.  Only so much you can accomplish when you are in so much pain.  I tried a pain clinic myself, and had no success, but there are many who have.  Of course, they are usually affilliated with a major teaching hospital, so unless there is one near you, you'd have to commute to make use of it.  But they usually do have a psychiatrist on staff, as part of the team who helps treat the patients, because chronic pain can worsen so many symptoms.

 

Take care. 

blackcat
blackcat
8/16/09 12:58am

I would like to know how those who don't have disability insurance or a spouse to support them manage?  I can accept not having a career, but life is going to be a lot more difficult when my savings are gone and I have nothing to live on.   I have never held a full time job and have no pension.  Is there anyone here who can relate?

SusieB
SusieB
8/18/09 4:45pm

Susan, I am 10 years exactly younger than you and felt like I was reading about myself, except I work for the government at the moment. (I wanted to become a prof. of English though and did adjunct work actually.) I applied for disability retirement there in Dec. 08 and now it's in the hands of the Office of Personnel Management in DC. I'm waiting now and it's been such a guilt-ridden, pain-ridden, stress-ridden time for me.

 

I just came from my 20-year reunion where I avoided answering the question of how I've been in a realistic manner because how do you say, "Well, I am battling migraine disease and fibromyalgia. I wake up with a slammin' headache everyday and pray it doesn't morph into an attack that sends me to the ER." People don't want to hear that. I did tell one person there the truth, someone I knew years ago who I know has an empathetic spirit. It felt good to tell the truth.

 

I feel like my life may be over or has been over. I'm going through the motions. I see students coming in to my office and getting full-time slots. I see people who don't have my seniority taking positions I normally would have applied for had I not known how sick I am. My self-esteem has taken a severe nose-dive.

 

When I have a good day, I'm like you and going crazy trying to catch up with laundry, shopping etc. I have to pace myself because I never want to push myself into getting sick while doing these things. I, too, will try to stay busy when in pain when really I just want to curl up in a dark room.

 

The bright spot for me? My husband doesn't sit around blaming me, even though he, too, doesn't make enough to support us and knows that we will have to make cuts in our budget if and when the disability comes through or not. Also, I have a Saviour who is walking with me right now. My faith is sustaining me. It's just that fear and anxiety have become a way of life for me, so I've turned to therapy again to try to talk that out. I have depression, anxiety disorder and OCD to add to the mix. I'm constantly worried about what people are thinking about me, which isn't healthy.

 

You are not alone though on this path and I would be honored to walk it with you. By the way, have you looked into the online professor jobs? One of my former coworkers does that. He turned down one recently at West Virginia Institute (I think that's it) because of his Social Security (he would be making too much). Maybe that's an avenue that would work for you. I've thought of it myself actually.

 

Anyway, I will pray for you, Susan. Thank you so much for your post. It was a release for me actually just to know I am not alone.

Susan
Susan
8/19/09 4:40pm

Dear SusieB,

 

Thank you so much for taking the time to write.  It certainly does sound like we are on the same path, indeed.  Unfortunately, though, (as you know only too well) it's a tough road to be on.

 

I don't know how you keep on working.  I rememeber the year I worked after my car accident, and it was just a nightmare.  Such pain, such an energy drain.  Physically and mentally, I was as low as you can get.  I think I was in bed by 4 or 5pm every night just from the exhaustion of it all.  As a matter of fact, I do still tend to go to bed early, (though not that early) because the pain does take it's toll physically, and I do find it wears me down.  Plus, I'm up early with the pain, so I guess it all evens out.

 

I do miss my work, but know I could not possibly teach at the college in my condition.  This past summer it seems as though I haven't had any truly "good" days.  I'm hoping the fall turns a corner for me there (don't know why the seasons should make a difference, but I'm a pretty optimistic person, and fall is my favorite time of year, so who knows?).   Your suggestion to look into online teaching is a good one.  I know there are online courses (there's a Phoenix College near me that I think does that mostly), but I've never looked into it.  I will definetly explore this soon.

 

Your reunion sounds like a prime example of the "so what do you do nightmare".  I've never attended my high school reunions, just one for undergrad before the neck/migraine pain was a debilitating issue.  At this point in my life, I guess I am so isolated on pain days (which are most lately), the work issue doesn't really come up.  But I'm trying to be less stressed about it when it does. 

 

Trying, because you can usually predict situations when it will come up eventually, hope it doesn't get mentioned, then feel the dread when it is asked.  Then you feel your stomach drop.  On one occasion, I was at a neighbor's open house (who we haven't socialized with in years), just relaxing over good food, good cheer, when some friends of theirs brought up the "how's work?  your'e not working?  what are you doing with yourself?" Bang, bang, bang.  I was so relaxed, I was caught off guard, and the questions just threw me.  I guess for a few reasons:  I felt I had to "justify" not working, I was reminded (just when I was relaxed and not even thinking about my health problems) of being a person with a disabling condition, and I just wasn't prepared to be put on the spot.  I think I murmured something about taking time off.  I just didn't want to go into the real reasons I wasn't working.  Who wants to start that conversation?  Just let me pretend I'm well, just for tonight.  My reality will come back soon enough.

 

As you can probably tell, the not working thing has me thrown for a loop sometimes.  But when dealing with chronic pain, we have to made adjustments.  I guess that's one of mine.  One of many, some easier than others. 

 

Today is a no pain medication day (I am a pro at avoiding rebound--been doing it successfully for years).  So, I try to do little things that won't aggravate the pain too much.  Today I accomplished getting some immature poison ivy out of one of my gardens before it runs rampant, and watched the news, was able to read the newspapers, able to use the computer.  Doesn't sound like much, but each little thing I do accomplish feels good.  Dinner will be sandwiches, and depending on how I feel then, it might be "make your own".  Usually I take a hot shower right after dinner, that helps relieve the muscle knots that build up during the day.  But so far, I haven't aggravated anything to make the pain worse, so I guess that can be considered my "accomplishment" for the day.  Some days I'm not so lucky--I get so focused on trying to "catch up".  But I managed to behave myself today :)

 

Your husband sounds like he's very supportive.  What a great guy.  I have a great guy, too.  He helps me lots, and I appreciate everything he does for me.  He is very supportive of my limitations, almost always.  I think I am definetly the most intolerant one concerning my limitations, truthfully.  I resent when I can't do what I need to/want to/ should be able to do.  We have our highs and lows dealing with health issues, his and mine.  Sometimes when we are both not feeling well at the same time, that's the biggest challenge.  Having two ill people at once can be a bad mix.  He's 64 and needs a hip replacement, which he is putting off, but which causes him a lot of pain.  And he gets very cranky when in pain...good thing I never get that way :)

 

My sons are also helpful, if I ask.  But, I hate to ask.  That's just me.  It takes a lot for me to admit that I'm having a really bad pain day--maybe something about admitting it out loud makes it worse for me somehow.  See that resentment about not being able to do for myself?  I've always been so self-sufficient, taking care of myself, and taking care of everyone else.  I'm just a natural-born nurturer.  My boys are good, though, when I'm having a really tough day, and they know it, they spring right into "nurturer" mode, too.  But even though it's something everyone should learn, I resent that they have to learn it in this way, from me.  But, they're great guys, and on low days, they can keep me going (when they're not driving me too crazy).

 

Good luck with your disability claim.  I hope everything goes smoothly.  I'm still navigating the hoops the car insurance company (of the woman that rear-ended our car) is putting me through.  What a major aggravation, in all ways.  Hopefully, it will be resolved sooner, rather than later (after all, it's already been almost five years!).

 

I was really touched by your letter, and I was amazed at how much we have in common.  I truly appreciate the opportunity to have company on this path.  Please let me know how you are doing.

 

Take care. 

 

 

 

 

 

 

 

WendyG
WendyG
9/ 1/09 10:01pm

I have been suffering from migraines for over 30 years, and they are so bad i would be off work for 2 - 3 days some times. I needed to go to the hospital to get injections and be there for at the very least 8 hours, Now thanks to Replax I still need to leave work when I get one but I am back the next day as long as the otherside doesn't start up. This is the closest to a normal life i have had in thirty years, \Thank you Replax....

Susan
Susan
9/ 3/09 10:51am

Dear WendyG,

 

Thanks so much for writing.  Wow, another long-term sufferer!  It's amazing that we can count our history of migraines in decades.

 

Replax didn't do the trick for me, but I'm glad that it has enabled you to keep up your employment while dealing with migraine attacks.  That's the trick, I guess, finding the "magic formula" that works to help migraineurs keep migraines at bay enough to lead a better life :)

 

Take care.

WendyG
WendyG
9/ 3/09 2:01pm

Smile Thank you for the reply,

I hope you find something that works, having said that we all know that a fix only lasts until the body get use to it, I have only been on replax for 1 year.  I am starting to get use to it, I don't fall asleep like I use too, so that kinda of scares me.  It is really tough though, I get them 2 sometimes 3 times a week. I have a brand new grand daughter and its get hard to see her.

Maybe, we all will see the day when there is a cure for us. I keep positive thoughts to get me through.

Good luck to all.

1 more day migraine free...

lynn
lynn
9/12/09 11:48am

I just read your post - so many of us with nearly identical stories.  I havent' worked in almost 10 years due to severe, chronic migraines.  Yes, I get the 'odd' looks when I'm asked what I do and the answer I have to give.  Our medical issue doesn't show on the outside and people assume we're complainers or wimps.  Puh-lease!!  My husband says I'm the strongest person he knows!!  It is incomprehensible to him how I manage to get ANYTHING accomplished - I'm hammered 2-4 days of each week with migraines.  I run around like a maniac between headaches, always playing catch-up.  I've had these headaches (genetic) since early childhood and unlike the medical community, have ALWAYS suspected that over many years time, some kinds of permanent damage must occur.  One can only hope that, in time, with enough education, others will be understanding and more than that, helpful.  I do hope your condition improves and you have better days ahead.

Susan
Susan
9/12/09 1:43pm

Dear Lynn,

 

Thank you so much for taking the time to write.  Your note came when I really needed to hear from someone who is also dealing with this issue.  I have to agree with all that you've said.  Especially, of course, the impact of migraine disease over the long run.  Who knows what they will "discover" in the future?  But I know that I can feel what's going on physically now.  I guess it just takes a while for science to play catch-up.

 

Your husband sounds very supportive--you are very fortunate.  My husband can be at times, too, but since he is dealing with his own health issues, neither one of us is in a good place right now, health-wise.  I guess we just try to deal the best we can. 

 

Again, thanks for taking the time to respond--your thoughtfulness is truly appreciated.

 

Take care.

cclebl
cclebl
10/ 8/09 4:42pm

Thank you for posting.  I was just told by my boss last week to 'get better or else'.  We'll see what happens.

Susan
Susan
10/ 8/09 5:12pm

Dear cclebl,

 

Thank you for taking the time to write, but so sorry to hear about your boss' ultimatum.  Your boss is obviously of the opinion that you can switch your migraine disease on and off at will.  If only.

 

After losing my career to migraine disease, I can relate only too well.  My heart just breaks for the situation you are in.  I can only hope that your boss becomes more enlightened and empathetic, and that your employment isn't sacrificed to your migraine disease.  Good luck.

 

Take care,

 

Susan

Shannon
Shannon
1/18/12 1:19pm

I get severe migraines myself, which have made it impossible for me to work.  I had a a brain tumor at a young age and I have been getting migraines ever since.  They continue to get worse and more frequent.  I have also been experiencing severe stabbing pain in my head, which I thought were just because of damage from the brain surgery, but now it seems like they might be what is called ice-pick headaches along with my migraines.  I know that other people get migraines, but it actually makes me feel better to see that other people have such severe cases like me.  I understand the embarrassment you feel.  I actually get depressed because I can't make plans with people because I don't know if I will have a migraine that day.  Thank you for posting this.

Susan
Susan
1/29/12 2:29pm

Dear Shannon,

 

Thanks so much for writing.  So sorry it has taken me so long to write back, but I had a 3 week long period of mostly migraine/just getting over it/just getting it back. Miserable time, very depressing, and it's not over yet.  Today I took meds, so I am somewhat functional (staying away from rebound headaches means I only take meds infrequently).

 

I so feel your pain. Literally.  I'm so glad you have one friend who you can talk with, and please consider me another.  I haven't been on this site for a while, since all my migraine issues are the same or worse.

 

And now I am starting menopause, so I'm sure that's adding to the problem.  When does any life event not affect us???

 

Know you are in my thoughts and prayers, and please contact me if you need someone to talk to.

 

Take care,

Susan

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By Susan— Last Modified: 02/15/12, First Published: 08/07/09