I think its time for me to tell you my story. I’ve put it off for a number of months, maybe wondering what you would think. Perhaps feeling its too good to be true.
But I want to share because you know me and love me, and you want to know.
And I want to share because you don’t know me, but you’re living in that dark place right now too of chronic pain. Chronic migraines maybe like me, or Fibromyalgia, Chronic Fatigue Syndrome, Lupus, Lymphoma, Depression, the list seems endless. You’re feeling all alone. Starting to lose hope. Scared to leave your house. Not sure what medical course to take. Feeling like you’ve lost yourself in your illness.
I just want you to know that you aren’t alone. I’ve been there my friend. So many of us are huddled in the dark with you. I can’t tell you you’ll be healed of all of your pain, but I can tell you that you are not alone, and that there is hope even in our pain.
I don’t know how many times I’ve sat down to write to you and just stared at a blank screen.
How do I start? What do I say? How much can I tell? And where do I begin?
I guess I began when I wrote to you last spring after being gone for a year, trying to explain a bit of why I had been gone so long. We still didn’t know then what was wrong with me although we were beginning to understand.
I think at that point I had every part of my body tested and prodded. At least it felt like it. Attempting to figure out what was causing the anemia and then the migraines I’ve had an endoscopy, colonoscopy, CATscan, MRI of brain, ultrasound of pelvis and lower abdomen, EEG, and at least a gallon of my blood tested for everything under the sun over the last year.
By May we began to realize migraines were the root of what was causing all of these problems- the constant headache obviously, but the nausea, the brain fog, the memory loss, the anxiety and intense fatigue began to make more sense. I had never experienced migraines before this- honestly I rarely even got headaches. So migraines were kind of a surprise.
I went to endless doctor appointments. I went through 3 neurologists, 4 primary care doctors, a naturopath, an OB/GYN, a chiropractor, a gastroenterologist, an acupuncturist, and 3 ER visits. A couple of them told me they couldn’t help me after trying all of their tricks. I like to say they fired me. I was not an exemplary patient… Nothing helped me. In fact it felt like everything they gave me just made me worse.
I won’t list all my meds, they were a lot, and frankly I don’t like thinking about them. There aren’t many meds specifically for migraines, so you take ones they have discovered on the side work for migraines as well. So I took a few anti-convulsants, anti-psychotics, anti-anxiety/depressants, and maybe others. I got every single side effect on the list. OK, maybe not every one, but at least 75%. It wasn’t pretty. I grew to hate my doctor appointments and what new thing I had to try, and how crazy it would make me feel.
I began to feel like I was losing myself.
The loneliness. The isolation. I ached with it.
Have you ever felt like that? I think its more common than I knew before all this began. I felt terrible for people with chronic illness, but I never understood. The loneliness, the fear; that people forget you after a few months or the 5th time you have to cancel because you’re having one of those bad days. The hesitancy to make any plans because you’ll probably have to cancel. I imagine people thought I was avoiding them. Friends became scarce. I think they just didn’t know how to help me or what to say. And I was fragile, very fragile. I know they were scared of doing anything that would trigger a migraine. But sometimes the loneliness hurt almost as much as the pain.
I’ve been looking through the few times I wrote in my journal this time and I’m struck by what I wrote about. I never described the pain. I never lamented and complained about how awful the pain was. It was about how it all made me feel. I would complain briefly about the loneliness or guilt or envy, then I would speak words of truth to myself.
“I guess I’ll just keep putting one foot in front of the other because that’s what I do. There’s no other choice.”
“I feel a bit of hope again. We will be OK. Maybe even great! We will love and learn and be together. Maybe even survive!”
or my favorite…
“People keep saying- you will get through this. There is a light at the end of the tunnel. We will figure this out. It will end. But I’ve begun to think maybe it won’t. Maybe I will learn how to live IN it. How to survive. How to love and live in the midst of pain. How to make life not about how I feel but about the people around me. Learn to see past my pain. Because I have to. Or honestly… I won’t make it.”
I remember writing that last one. I remember the stubborn determinism in my heart that this won’t change me into a bitter person, but it would make my heart open and tender to others in pain. Damn it I would let God make something beautiful out of this mess!
I can only hope that is true.
Post 1 of 2. Next week I’ll continue my story with the last 9 months, and how my life began to change shortly after I wrote that last entry in my journal.
Joy and Ginger 