Here (finally) is the compilation of coping strategies/suggestions that I have been collecting and promising to post. I have gleaned the information both from direct responses from my original request and also by following various discussions posted on a.s.h.m. over the last while. I hope it is a useful list. I will be grateful for any suggestions for improvements (I intend to update this from time to time). Please e-mail me at jdulson@uoguelph.ca
Jackie
-Learn everything you can about migraine. There are many different
triggers and symptoms for migraine, and increasing your understanding
greatly diminishes fear and increases your capacity to manage your
condition.
-Get to know your own migraines. Charting when migraine occurs in
relation to activities, foods, weather, and hormonal changes is a
good way of identifying your triggers.
-Find a doctor who is interested in migraine, well-informed, and
willing to involve you in all decisions concerning your treatment.
Avoid any doctor who still believes in "migraine personality traits",
that it's "just stress" or otherwise treats you in a condesending
way. Knowledge about migraine and the strategies for treatment have
changed significantly over even the last 5 years, and every doctor is
not going to have kept up.
-Look up any new medication you are given in the Physician's Desk
Reference (most libraries and bookstores will have a copy) to get a
full account of any side-effects. Many migraineurs seem to experience
the rare side-effects that physicians may not think warrant
mention.
-When something works for you, go with it . Ignore nay-sayers, even
when their motives are the best.
-This is especially for "Hats"; don't waste the good days!
-Inform family and friends about your food sensitivities or other
avoidable triggers and remind them regularly. This goes a long way
towards avoiding or minimizing having migraine attacks at social
occasions and was generally reported to be appreciated by all.
-Ask family members to help out with your usual duties when you
have a migraine, and then let them do so. So many of us seem to try
to carry on despite until we reach total incapacitation.
-Set the tone clearly for how you need to be treated during a
migraine. People generally take you at your word, so try to avoid
saying you're better than you are (you know, the old "no, no, I'm OK
don't worry about me" stuff). It's not fair to them. Being honest
about your pain and discomfort level gives those around us the
necessary information to respond appropriately and
compassionately.
- For very young children, placing a band-aid on your forehead can
act as a symbol they can understand and relate to ("it hurts here")
and may help them remember to play quietly.
-Consider encouraging others to participate in those planned
activities that you find yourself unable to follow through with. This
is perhaps most appropriate to those of us who suffer chronic
migraine that regularly interferes with our plans, because many of us
seem to feel a good deal of guilt over this. This can be difficult to
do with grace however, because it is natural to be feel left out and
resentful. Try to remember it is your migraine that you resent and
not the pain-free people around you.
-If there are emotional changes around your migraine (many have
reported feeling depressed before, during or after an attack), it can
be helpful to explain this to those that are close to you when you
are feeling well. This may help to avoid hurt feelings from taking
migraine-caused behaviour personally.
-Be responsible for your own illness. If you need to be alone, say
so; on the flip side, if you feel you want someone to be available to
get you water and other comforts over the course, ask for that.
-For immediate family members (or others who live with you day to
day), it seems most become acutely aware of the severity of the pain
we live with and feel helpless and frustrated. It can help them cope
with their feelings if they become more educated about migraine as
well; encourage and help out in this.
I)
-As much as possible, change your work environment to minimize
the number of triggers you are exposed to during the day. Remember
these changes will increase your productivity, so try not to be
self-conscious about asking for necessary change. Some areas where
change may be possible include:
- Assess the "refresh rate" of your computer monitor; where possible
(and I know it may not be) try different monitors to see which is
most comfortable. -Always set the brightness and contrast of your
monitor to where you are comfortable. -Ensure the light intensities
between your computer monitor and the surrounding area are
approximately equal. -Change the bulbs/tubes in your work area to
eliminate or reduce the type that trigger migraine (fluorescent
lighting is a frequently cited trigger). -Assess your work area for
its ergonomic design and rearrange objects to reduce or eliminate
eye, neck or shoulder strain while working. -Request a smoke-free and
perfume-free environment. -Where possible, arrange to have the
ability to open a window close to you. -Protect yourself from or
eliminate loud or constant noise in your work area (radios,
machinery, etc.).
II.
- Again withing the limits of your particular job, request or take
advantage of any flexibility in scheduling that is available. The
goal here is to be responsible for deciding when you can work most
productively and when you will not be able to perform adequately.
This again is not an unreasonable request; you are arrangeing with
your employer to get the most bang for his/her buck!
Options here include:
-FLEX TIME; this seemed to be critical to those with frequent
migraine and most often cited as THE best coping strategy. Some
degree of flex time could be helpful for any migraine sufferer.
-"Saving" the less taxing, more routine tasks for those days when you
have a low-grade migraine can be helpful in reducing the errors that
can occur due to cognitive effects ( not being able to do math or
find words) and/or physical effects (that clumsy, can't quite trust
your body to behave normally thing). It can also help in meeting
deadlines and keeping your productivity up despite the occassional
slow day, and does not, in general, require your boss' permission.
-Working from home, either full-time or on "down" days, allows some
people to get some work done while taking care of their migraine.
Those who were able to work at home for themselves with flexible
deadlines seemed to be the happiest here (and don't we all wish we
could be them!)
-Inform co-workers about your condition and what your known
triggers are. Most people report co-workers were willing to make
adjustments to allow for sensitivities from things ranging from 3M
Desk Cleaner to perfumes and cigarettes when they were made aware of
triggering effects.
-A number of people mentioned that phoning in sick with a migraine
was particularly difficult, either because of guilty feelings or just
due to the level of pain being experienced. Several options were
noted:
a) have one person you can call who will then inform any
others that need to know ,
b) call in to a machine so you don't
actually have to have a conversation with a real person (lots of us
seem to hate having to answer well-meaning questions about HOW sick
we are),
c) for those with frequent, regular migraine, informing
co-workers that if you are not in by a certain time, they can assume
you will be at home with a migraine can eliminate having to call in
at all .
- A sense of humour seems a prerequisite to getting by at work. It
seems everyone works with some know-it-all who could cure us of all
our pain if we'd only take their advice (or an aspirin). I won't
catalogue the many acerbic retorts that flew by in the recent "how to
deal with non-sufferers" thread, but it would seem that having at
least one good snotty reply on hand for those really persistent souls
might come in handy. Or you could barf on their socks.
-If the migraines are infrequent and do not affect your work, the
concensus seems to be to keep quiet about your condition to your
supervisor to avoid prejudicing her/his evaluation of you.
-What to do/say when the migraines are frequent enough to be noticed
yet do not adversely affect your ability to do the job appears to be
the most touchy issue. There does not seem to be any one way to
handle this very important area; a successful strategy depends on the
nature of the job and the personalities of those involved. That said,
I believe that there is a lot of room for improvement in this area if
the general population were more informed about migraine. The options
that were suggested include:
i) Be honest and upfront. Inform your employer about your condition,
what you do to control it, and how frequently you can be expected to
be absent. Emphasize what you will do to make up time or meet
deadlines, and certainly point out that your past job performance
proves that you are as productive as any other employee. Avoid
"awful-ising" your condition; your goal is to reassure your employer
and impress him/her with your professionalism.
ii) Say nothing. Some
felt strongly that if they were doing their job well and meeting all
requirements, then their medical condition was their private
business. There was much discussion at one point about the "Americans
with Disabilities Act", but not being an american, I can't comment.
It does seems good advice nevertheless to inform yourself of your
employment rights in whatever country you are working in.
- If migraines are affecting the work you do, it seems best to
acknowledge this and quit fighting your own needs. Some organizations
may be able to accomodate you anyway when they are made aware of your
predicament (flex time or job-sharing for example) but others will
not. Compassion is not generally considered a corporate
responsibility. For each of us there is the frightening possibility
that we may one day be unable to continue in our current career due
to migraine or even to hold a steady job at all (a number of you
already have been there). I can suggest no other "coping mechanism"
for this other than to get out there and find the things you can do.
And I recognize and respect how difficult and emotionally draining
that can be.