A Caregiver's Honest Look at the Long-Term Effects of Chronic Migraine
By the time my wife and I met, she had already been suffering with chronic daily migraines for years. Due to this, my baseline may be a bit different than others. Although she was in pain daily, she was still a fairly upbeat and outgoing person.
Obviously, the outgoing part was limited to days that were more tolerable than others, but we managed to find little adventures to go on from time to time as the pain levels allowed.
Trying new treatments over and over
During this time, my wife had already been through a handful of neurologists. Each one promising that their (one trick) treatment would be the thing that gave her breakthrough type results. Ever the positive one, she would anxiously wait to see if the results of their treatment were truly life-changing (with every hope that they would).
Unfortunately, one after the other, each doctor would try, and fail. Being an understanding person, my wife was all too familiar with the knowledge that what works for one, does not necessarily work for someone else.
Cookie cutter mindsets
Although each neuro doctor she saw was unique in their own way, they all seemed to have the exact same mind frame.
Medication X, fail; Medication X, Fail……Pain Management.
Sometimes treatment would be continued for three to six months before they decided they’d had enough while other doctors and treatments ended if the very first treatment or medication didn’t work. But pain management was always their “go to” response at the end.
If there is a familiar ring to this, it is because Albert Einstein once defined insanity as: Doing the same thing over and over again and expecting a different result.
Fast forward a few years
After several years of trying every medication doctors were willing to prescribe and even going through with an experimental surgical procedure that was proclaimed to be “life changing” by the physician that came up with it, only to find that none of them helped; my wife began to change.
We would still attempt to find adventures on the good days, but they were growing shorter. Riding in the car together long enough to go pick out Redbox movie rentals took the place of going to the local theater. Trips to restaurants started to get replaced with quick stops at a drive through window to pick up something because it was easier than cooking.
The impact of worsening migraines
Understand that this is in no way me complaining about my wife or our life together. These are simply changes that took place over time. There are exceptions to these changes as current as this article is being written. We just have fewer and fewer of them as the migraines seem to be getting worse. As a result, we cherish each little adventure even more.
An unfortunate but understandable change was happening in my wife’s personality. Medications that were beginning to lose their effectiveness were taking a toll on her mood. The smile she carried with her for so long was being replaced by a look of wincing from pain. Her happy demeanor was being drained and replaced by feelings of simply surviving or existing. Long-term pain was draining her energy and stripping away her ability to remain positive or optimistic about the possibility that one day she may find relief.
Meanwhile, back in the present day
While we are still working through the ever-worsening migraines, we have found ways to keep each other positive when it is needed. As often as it is possible, we now make it a point to get out of the house for at least a little while (an hour or two).
Because we have been together for almost eight years, I have learned very well what her tells are when she is feeling bad along with the tells she presents with just before things get bad. It allows me to think proactively and do things like grabbing an ice pack for her head or neck or grabbing an extra throw blanket for her and telling her to lay down and rest (sometimes she has to be reminded).
Migraine caregivers: cherish the good moments
My wife is a fighter. That has never changed even through the worst of her migraines. But overall, suffering from chronic daily migraines for such a long time has robbed her of both her youth and her joy. It has stolen her smile and left her wondering if or when things might get better, and taken away her excitement about what the future may hold.
My advice to other caregivers is this. Pay attention to the little things and learn to cherish them. They may be all your loved one has the energy to show or do. Pay attention to the big things because you may be the one that has to explain them to the doctor on the bad days. Keep track of the good days, not the days that did not work out. Finally, on the days when your loved one has run completely out of positivity or faith, learn to have enough of both for each of you.
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