It doesn’t matter if we do things right, “doesn’t matter if we do things according to the book or what we expect or what others expect. What matters is the quality of heart and integrity we bring to what we do. . . . What matters is remembering that we care about as many moments of our life as possible.” -Tara Brach
So often I feel like I’m failing. Failing my family and friends by not keeping in touch, failing my husband by not being the equal partner I signed up to be, failing the folks I write for at Migraine.com by not submitting more posts. Failing you by not writing more often, by not responding to comments, by not updating my blogroll. Failing myself by not having a career, by not being able to support myself financially, by not doing more activities that nourish my soul.
The funny thing about these “failures” is that they are not my fault. I would participate in the world if migraine and chronic daily headache did not drag me down the way they do. This is not to say life would be cake and balloons if I didn’t have migraine; I’d still have challenges and frustrations, but chronic illness has hijacked my personality. I am not the unproductive, antisocial being that illness has turned me into. And so I fret. Fret about the difference between who I am fundamentally and how I behave because of migraine.
What if, instead of dwelling on what I cannot achieve, I view my life the way Tara Brach describes? What if I see the quality of heart and integrity I bring to everything I do, the intense focus I give to even the most mundane day-to-day tasks? Then I am not failing at all. In fact, I am overflowing with love and purpose and gratitude.
What matters to you?
Oops, I misspelled the researcher’s name, it is Dr Hadjivassiliou who has correlated migraine with gluten and auto-immune disease.
Finding good doctors/sources matters to me. I have seen 3 neurologists since 2004 and they have been helpful as far as treating the pain but not as far as finding the root cause. There have been times where I have had chronic daily headaches but as I discover and control for more triggers, they have decreased from the top of 13 headache days/ month to about 4. I am “lucky” that I have identified gluten as a trigger and find docs that understand this autoimmune disease of the brain and who keep up with the literature. It has taken over 20 years but I see light at the end of the tunnel. Dr Hajivasselou has done a lot of research in this area.
Kerrie,
Thank you so much for this post! I have been feeling like this for a long time, but even more lately. My migraines are chronic daily and have been for over 6 years, but the last year has been even worse, every day at a level 8-10 pain. I no longer have “good days”, I occasionally have days that I push myself to do something that has to be done, or every now and then to spend time with my family, but it is hard, and I feel like they are not getting the “best me” – the person I once was. I am seriously considering trying the neuro-stim in the very near future, but sometimes I am scared that the “old me” could be lost forever. That is on my worst days. When I am feeling hopeful, I daydream about how great it will be to have my old personality back – to be fun, silly, outgoing, optimistic.
I don’t really know you well, but have seen you in CMA, and have read your blog some, and I think you are doing great things – blogs like yours help others so much more than you think! Keep up the great work and don’t be so hard on yourself. Like you said and you know deep down, IT IS NOT YOUR FAULT! God Bless!
Kerrie:
I am a migraneur. For about 10 year was a professional
poker player. I think learned something valuable about playing
poker for a living that applies to anyone with a chronic pain
condition.
In poker-many times you are dealt a poor hand/ or a hand
which is good-but still gets beat . As a professional player
one of the keys is you learned to play every single hand the
best to your ability. If dealt poor cards (like being dealt a
tough hand in life)-you play that hand the best possible way.
In many cases you just throw away the hand. LIke in life-
when suffering from a migraine-many times you must put
others on hold and deal with the pain. Whether that is going
to a quiet room-getting away from people etc. You can only
play that hand (i.e. migraine situation) to the best of your
ability. Yes that is very trying and hard. Many/most other persons won’t understand. Yes life may not be fair. But you
(Kerrie-all migraneurs) can only do so much. Let yourself off
the hook. Any guilt will not help. And of course if having a
pity party-make it short. Take it one day, one hour, one
minute at a time.
Hang in there-fellow migraneurs. Have and are there where
you are. And bless you Kerrie-this blog am sure is helpful
to many fellow migraneurs. If you reach and effect positively
just one person with this blog (and that is a given.)
Then you have been a blessing to others. Keep in up.
To all-“One day at a time.”
“Give yourself a break”
“Play the hand dealt in life-the best of your ability. That
is only what can be expected of you.”
“Never let others who have no idea what you are going
through-influence your life negatively.”-I sure remember
a previous blog by Kerrie and how one of your Uncles has
no concept what going through. As repeat-never let
others get you down about your migraine condition.
Sorry rambled.
Timothy Bauer
Reno, Nevada
This post speaks to me. I too suffer from Chronic Migraine. It is a rare occassion when I do not have a migraine of some intensity. In the last six weeks I have had two days without headache.
In many ways the migraine consumes one’s life and personality. Work, time with family, time doing something once loved… all becomes, if possible at all, a chore or something to “get through” until one can escape into a dark room.
As a father of father of four boys aged 8 through 17 I need to be active. I need to be able to jump up and doing something, anything with my family! I hate the migraine for stealing my life. I have named, collectively, the migraine, Marvin. In good times I joke about Marvin visiting, like some unwelcomed guest. In bad times I curse him, I wish him physically real so that I could do harm to him, like he has done to me!
In the end, for now at least, focus on positives is critical. Even if the positive is only hours free of pain during a day, or some other small sucess in the ongoing war against…Marvin.