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Saturday, April 9, 2011

Frustration: Loss of Independence & Lack of Compassion

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.

7 comments:

  1. Agreed. Totally. Great post Jamie.

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  2. Thank you. I am struggling with many of the same things. Keep the faith.

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  3. Thanks for saying what we all feel inside. Two of the other things I struggle with is how people feel pity for me, because I am unable to function like everyone else. That really bothers me. Also, I really don't like when people judge me and think I am "lazy". I am far from lazy, but it's the disease that doesn't allow me to live and function like everyone else.

    Also, the other day, my Neurologist chewed me out and told me to stop asking why I had Migraines. She told me that I will always have them and that I should just learn to deal with them. That upsetted me quite a bit. I told there that I think she needs to help me find the "reason" behind the pain instead of trying to mask it with medications. I don't know if she liked that or not, but I feel with all their (Neurologists) knowledge they should try to find an answer, especially when someone's migraines have changed and as the patient they are informing the Neurologist about the change in pattern of migraine. Sorry about the rambling, just wanted to tell you.

    Thanks for the post. I am so grateful that you write and use your gift to share with others. It really helps to understand what I am going through even though I can't explain them in my own words.

    Holly

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  4. Have you looked into prism glasses? There is an eye doctor in Michigan doing some amazing work with small amounts of prism correction (up and down alignment between the eyes).

    I travelled from eastern PA to visit her office last year and it definitely helped with the a lot of the overall symptoms. I was able to walk into a Walmart without issues for the first time immediately. And I was able to get off Nortriptylin, which lessened the dizziness enough to function but wasn't a cure in any sense.

    http://www.visionspecialistsofbirmingham.com

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  5. Jamie, thank you for saying this. I have all the same frustrations, and sometimes I really blame myself for losing words and for spending many days in bed and for not exercising any more. It's hard to remember some days that it's the disease, not my lack of willpower.

    Holly, I'm really sorry your neuro didn't say things more kindly; sometimes neuros are too busy (or too judgmental!) to be sympathetic.

    The truth is, doctors often don't know why one particular person has migraines. There are enormous amounts of research being done on what causes migraines and how to stop them, but it's slow and steady progress, made over years by studying lots of people. A neurologist can say "Many people get migraines from alcohol", but she can't say "stopping alcohol will cure your migraines", because she just doesn't know. The same goes for knowing why your migraines are better or worse -- if she knew that, we would be a lot farther ahead in migraine research than we are!

    I share your frustration, so much. If only migraine were a germ that they could see on a microscope!

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  6. Thank you all for your comments.

    Holly, thank you for sharing. I understand your frustration, and you know that you don't have to apologize for rambling or venting to me. :)

    Melinda, someone else recently mentioned prism glasses to me, as well. Thank you for the link. I'll have to look into it and see what I can find.

    Jonquil, it can be very difficult to remember that it's not a lack of willpower... it's the disease. I sure wish that migraine was something they could see in some test, and then find a cure.

    Blessings!

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