Dear Mind & Body:
I want so badly to help you feel better, but I don't know or understand what you want from me or what you're trying to tell me. Why do you keep sending me mixed / unclear signals?
Why do various treatments seem to work for a short amount of time, and then they stop? After years of trying so many different medications (I hate putting so many chemicals into you!), we had the neurostimulator trial, which resulted in zero migraines for a week - successful (yay!). But, since I had the permanent stimulator implanted, you've had a difficult time recovering and working with the device.
How do you expect me to eat well and exercise at all, when you're constantly in a state of panic? I know that you're sensitive to light, so we have dimmed lighting, dark curtains, dark sunglasses, tinted windows, etc. I know that you're sensitive to sound, so we have volumes turned down and I limit exposure to crowded or loud areas. I do my best to stay away from smells (such as perfumes and candles) and tastes that bother you. I know that you ache all over, so I sit/rest/take breaks/etc. much more often than I used to. I do all of these things to make you feel better, but you don't respond well at all. Am I not making enough changes? ...not making the right changes?
Why do you not enjoy the things you used to? I know you had problems with depression before all of this pain, and I know that the depression is worse now; but that doesn't mean that you just shouldn't feel positive things anymore. You seem fine feeling anger, sadness, depression, fear, guilt, etc. Why do you block joy, happiness, excitement, etc?
Why are you preventing me from being able to read and write? I used to love reading and writing. I used to be so smart, and now I can barely follow a short article or conversation. My cognitive functioning seems so impaired that I feel stupid a lot of the time. Have you lost the ability to do the things I'm struggling with...or is it the illness...or the medications?
But, with all that said... I admire you for all that you've been through! The past 2.5 years have been horribly challenging, and you've endured so much. I'm doing my best to take care of you. I'm continually learning more about migraines and possible treatments (both conventional and complimentary). I promise to keep trying to improve, and to be more appreciative of how much you constantly endure.
Me
This is a very powerful letter to yourself. I hope it starts the kind of dialogue that gives you answers.
ReplyDeleteWith your permission, I would like to share this post with my other readers: to post links to other letters to ourselves. I think we can learn from each other and our challenges. Our successes and our failures. Our strengths and our frailities. I think, in the end, it is our strength of spirit that keeps us going, trying, striving, living, loving.
I hope your mind and your body give you the answers that you want and need.
That makes me so sad for you. I was hoping for relief from the stimulator. I know this sounds selfish...but I was hoping it would work for you...because that would mean maybe it would actually work for me too. You are in my thoughts and prayers!
ReplyDeletePhylor, thank you for initiating the letter.
ReplyDeleteJessica, I'm getting some relief from the stimulator, but I'm having a more difficult time with it than expected (by me or my doctor... neither of us is quite sure why). I'm able to do more (still isn't remotely close to "normal"), and that is a true blessing. It might still work for you, so please don't give up on it as an option based on my experience with it.
Don't know if this method would work for you Jamie, but I keep mine on one setting until I feel the pain change, then I change it, and keep changing the program every so often (like every half hour) - inluding ones that sorta pulse, until I start feeling some relief or its too late. It tooks six months AFTER I had installed before I started getting lasting benefit, and almost a year before it became truly predictable.
ReplyDeleteHoping you find a method that works for you! Mine has only been off when the controller broke since I have had it installed, otherwise on 24/7
Thanks, Winny. I keep your words of experience in mind. I might try your method... I haven't tried that. My mind tends to turn into mud, when I have a migraine. I'll talk it over with my husband, so we'll have a battle plan and he can help me get it changed.
ReplyDeleteI relate and sympathize with your letter so much. So beautifully done!
ReplyDeleteThis is a great post. You have such a strong sense of who you are, and that can only strengthen you in hard times. Still, like the others, I wish you were having better immediate results from the stimulator. Here's hoping that it will sort out soon.
ReplyDeleteWell written Jamie! I can totally relate to the frustration of unanswered questions and I can only imagine how tough the cognitive impairment must be for you, I only experience it on a mild level and I get really frustrated. It's really great to be able to read other peoples thoughts, struggles and frustrations and feel less alone so thankyou for writing! It's so fantastic that you still blog through it all. So inspiring. I hope things improve for you. I'll be praying for you. Bless you!
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