The theme for the April 2011 Headache & Migraine Disease Blog Carnival is: "What frustrates you most about living with a headache disorder or migraines?"
There are PLENTY of things that frustrate me about living with Migraine! Perhaps the most frustrating things are: the loss of independence and the lack of compassion.
LOSS OF INDEPENDENCE
I've lost a lot of the independence that I had prior to my car accident. I used to live a very fast-paced life, always doing so many things. I enjoyed being outside, walking, jogging, lifting weights, etc... I loved reading and having intellectual discussions, I always loved a good challenge. I've always been pretty thrifty, but I was living comfortably and saving (financial independence).
NOW, my life has slowed down so much. There are times that I'm unable to do anything, or just able to do one thing at a time. I stay inside (and my apartment has dark curtains and dim lighting) as much as possible because the sun is horrible to my head. I rarely do any kind of exercise because I can barely even stand up without feeling dizzy and lightheaded, plus the movement often contributes to a Migraine. I have to be thoughtful about what/when I eat (to make sure I don't eat trigger foods/drinks, to make sure I eat/drink enough, etc...). I often have trouble preparing food for myself, bathing myself drains my energy, and I'm unable to do a lot of the household chores. I'd love to spend my time reading, but I can't... or at least nothing longer than a short article (trouble with visual disturbances, concentration, memory, recall, etc...). I also have trouble just thinking/speaking... my mind doesn't process quickly anymore (sometimes, at all), I often can't think of the words I want/need to use, and I have difficulty following a conversation. Financially, I've had to learn how to budget for two people, plus we have much less income... with rising health bills, increasing gas and food prices, and amidst a wretched economy. I'm definitely still in the process of trying to get used to the limitations that I now have.
LACK OF COMPASSION
It's very frustrating how inconsiderate and/or uncompassionate people can be. This may be due to several different factors. First, they may have no frame of reference. If they have never had a Migraine attack or lived with chronic pain, there's no way for them to comprehend what it's like to be in non-stop pain. Secondly, they may not understand Migraine disease. They may only know some of the common misconceptions about Migraine disease (e.g., that Migraine is just a "bad headache"). Third, they may not understand that something that is "invisible" can be debilitating/disabling. The phrase "out of sight, out of mind" may be how they think of illnesses... since they can't see the effects of the pain/illness, then it must not be there. Lastly, they simply may not know what to say or how to respond/act.