Wednesday, June 8, 2011

Open Letter to My Colleagues, Family and Friends

Dear family, colleagues and friends:
I love you all very dearly, and  I am writing to you today so that you may better understand some of the things I have been going through.
I have fibromyalgia. It is a crappy condition that has no cure. It also is a condition that brings lots of awful symptoms. Some of these are:
  • Chronic muscle and joint pain
  • Irritability
  • Memory loss (fibro fog)
  • Insomnia
  • Headaches
  • Anxiety 
  • Depression
  • Sensitivity to outside stimulus
And these are just some of what I face each day. Each day, I have to face the reality that I may wake with something new. And, I have other conditions-Fibromyalgia often comes with a few friends like Hashimoto's disease (still waiting for test results for this one) and Raynaud's phenomenon-this means I have to stay warm, especially in my feet and hands. Each person with fibromyalgia has different symptoms and problems. I actually consider myself fairly fortunate, given what I have read and heard about others' experiences.
I take medication daily, along with lots of vitamins. I have to remember to take them every day. They help with my condition, but bring other issues as well. I see 4 different doctors, two of them I see weekly.
I am not writing to gripe about my health problems. I am asking you for something. I need, from you, understanding.
I have never been flaky. I am known for being reliable and responsible. For taking on a lot, getting it all done in record time, and with a big smile on my face. This has had to change. While I still enjoy doing fun things, and taking on tasks, I never know when my condition is going to come into play, and change my plans for me.  One of the biggest changes I have had to accept is that some days I look completely fine, and I even sound fine. But, I'm not. I am having stress, anxiety, pain, discomfort. I'm not always going to gripe to you about the various aches, pains and stressors, but I will continue to listen to my body, and avoid things that I cannot do.
I may plan something amazing and get everyone excited, only to have to cancel. I may come along for something fun, then sneak away for a nap. I may forget a major event, leaving people with hurt feelings. I may neglect to do something that I promised, only to fail to remember I ever said I would do it in the first place. I know, it sucks. But I am dealing with it.
Even though I may not always act like the person you thought I was, I am still that person. I am just as disappointed when I miss a meeting. I feel horrible when I forget things that are important to you. I am doing my best, but one of the things I have had to do is learn to let go of what causes me stress.  Being forgetful is one of those things. I can't fix it-I have accepted it to the best of my abilities.
Things are very different for me know. Not bad, just different. please try to be happy for me-I am taking a lot of initiative in my life-I am exercising when I can. I read a lot, to relax. I have begun meditating, which has helped with pain management and stress. I have stopped working so much and I get more time with my husband and kids. I have learned to do nothing, and I think I like it. I have lost weight, and gained friends. I have quit eating garbage, and started taking accountability for my long-term health. Even though so many things have changed, I am working hard each day to embrace these changes. I have learned a lot about myself, and about all the wonderful people I have in my life.

Please know that I am doing as much as I can. If I say no to you, try not to take it personally. You are not the only one that gets rejected by me. I reject my own desires more than anyone else's. My health situation may be permanent, but my energy will fluctuate. I can't predict when things will build up too much, when I won't have time, energy, or patience for something. This is the thing that may be hardest for you to accept-it may seem like I have changed. But, you know me. You have for a long time. People don't change that quickly-please give me the benefit of the doubt.

I may have sold many of you short, as well. I thought for sure people would lose faith in me, see me differently. I have been bombarded with offers for help, wonderful letters, emails and notes, and tons of understanding. For misjudging you all, I am sorry. I wallowed a bit in my own misery in the beginning, and felt that my world was upside down. I now know that my true friends will stand beside me no matter what. I have realized even more all the wonderful people I have surrounded myself with over the years. They have all shown to me, over and over, how much I mean to them.

I love it when you call to check in-just like I did before. Please don't leave me out of things-give me a chance to decide whether I can manage it. Thank you for making accommodations for my food allergies-I know they are difficult to deal with, and I appreciate your effort. But, don't think I expect it. I will show up with plenty of options for myself.

everyone's expectations (even my own!), and some days, I will fall flat. Most days will fall somewhere in the middle.

If this is too much for you to deal with, I am sorry, but I am unable to help you with your disappointment. I have to put me first. And this means I may not always have room for a second place spot.

Love, as always,


***Fellow spoonies-feel free to steal this to your heart's content and tweak it as you feel necessary, as long as I get a little love (i.e. credit!)

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