This started out as the saddest post I’ve ever written. It gets better, much better, but the first part still makes me cry. (Mom, skip to the epiphany.)
RANT
I sometimes forget I’m an interesting person. People ask what I’ve been up to and my answer is basically nothing. We used to go out all the time. We’d see friends at least twice a week, more often three or four times. We’d go to plays, baseball games, concerts. We’d eat dinner out nearly every night.
Listening to friends talk about going out made me realize how much is missing. In the last couple years, I’ve really lost something important to my identity. Where did I go? Do I go out less because I feel worse or because I am more aware of how bad I feel?
It is no longer a matter of pushing myself. The last couple times I’ve tried to meet friends for brunch, I’ve left the restaurant in a woozy daze, shaking uncontrollably and feeling like the world is on its side.
Our car is in for a tune-up at a garage literally five blocks from my house. I’m trying to figure out if I can get there before it closes at 5 and what I’ll do if I can’t. It is a gorgeous day. I want to be outside, walking and enjoying it. But I feel horrible.
You know I hate to dump my complaints on you. The problem with finding the positive twist is that I don’t know if there is one. I miss myself.
Creating my Facebook profile, I was surprised by how many interests and activities I could write. There was a sense of deception… Do activities have to be something I’m currently doing in my life? I do them when I can, but that isn’t too often.
Have I become an “I can’t” person? If I have, it is with reason. The last six months have shown me that I can’t make classes that I sign up for, that I have to lie in bed while my friends play Rock Band, that I can’t make it to parties, that I cancel on friends at the last minute. Everything proves to me that I can’t do it. That’s not Kerrie. At least, it wouldn’t be if I had my say.
I am so sick. So much more than I’ve ever let myself believe. I want my life back. Hell, I’ll take any life these days.
*EPIHANY*
When I feel bad, I feel awful. When I feel good, I feel tremendous. There aren’t in-between push-through-it times right now. As is my pattern in life, my headaches, dizziness, wooziness and nausea occupy the extremes.
I’m writing this sitting in my hammock, which I hung after I got home from picking up the car, going to the library and getting coffee. A shower energized me today, though it usually makes me feel worse. I only have a mild headache. The wooziness is slowly creeping up, but I’m still happy.
I’m not lazy or moping. I do whatever I want or need to do as soon and as long as I’m able to do it. I think I am an “I can’t” person. But almost exclusively when I truly can’t!
LOOKING UP
The last two days have been particularly bad. Wednesday started out great, but three-hours spent at a new neurologist’s office was exhausting. The appointment was great, but it wore me out more than I have been in a long time. I woke up Thursday with such a bad migraine I canceled my appointment with a different new neurologist. I also skipped the baseball game Hart went to with some friends. And the migraine was with me until 11 a.m. today.
My outlook is much improved over this morning’s take. I don’t get to do many activities I want to do. I feel bad more often than not. I am much sicker than I’ve ever acknowledged. These things suck.
Still, I have a life that I love: An amazing husband, wonderful parents and family, friends who haven’t forgotten about me even though I’m not around much, a beautiful house, trips to incredible places, a blog with a huge readership and readers who care about me.
I enjoy this life most of the time. This morning was bleak, but I still have hope that I can live a happy life in the face of illness. I just have to remind myself of that once in a while.
Kerrie,
Please don’t lose hope! I know EXACTLY and totally where you are, my friend. Go back, two years ago; there was a young woman, (there were two young women. You were the one I reached out to then, I clung to your stories and encouragement.
Yes, when we lose our inner self, it sucks in so many ways. Focus – she is there. Right now, she is just in a bad spell of Migraine disease. It takes over, no doubt! It steals our lives, robs our identity, strength, and sometimes our desire to go on.
But there is HOPE! I for one, never thought I’d leave a hospital bed. I was there – every 4 to 6 weeks, hooked up to the IV, waiting for the pain to stop. Waiting for some drug to work. Going from one state to another, one doc to another. Waiting and waiting. But there is hope, and please don’t lose it. You just need to take care of you. Once the right mix of (garbage) meds are found for you, you’ll start to feel better. It’ll take a while. But you’ll get there.
I never thought I would. It took years, but I’m here. Fighting everyday, but here. Praying for you, friend. Oh, and guess who I have tix to see next month? our fav DMB; here’s hoping I don’t have to sell them this time! Do you recall, I had to in 05?
Praying for you, Deborah
The common thread in all your responses is a positive attitude! You are in pain, you feel lousy, you have given up so much but you still have a zest for life that resonates throughout your e-mails. The good days are all the better, because you are very aware and ready to enjoy them. Thank you for being your own very special people. Some day, somehow you will find relief. Until then, please enjoy the good times and know that others care.
Hi Kerrie –
SO often I find myself saying “I want my life back”, as you described.
The thing is, my life WAS taken away. Like you and many of us, when the migraines became daily, I truly lost the life I had before. Can’t work, lost my home, and most importantly, I lost the fun, athletic, dancing, singing, traveling, interesting person I used to be. Used to be that if someone asked “what have you been up to lately?”, I had lots of things to say. Now? – Zippo. Zilch. Nada. Nothing.
It’s embarrassing and disheartening.
After almost 7 years of disability, I often still struggle to find an “identity”. It’s hard.
Luckily, there are also good days when I can see that I DO have “a life”, – it’s just different than it was, but it’s still LIFE. On those “good” days, I’m grateful for my great family and friends, for the things I can still do, and even for things I’ve learned. I see that I’m still the same person with alot of great qualities.
But boy – sometimes it’s a hard sell. It’s REALLY helpful to me to read your post and know I’m not alone in my struggle with this illness.
Thanks.
Please know that I’m thinking of you and nodding along with your description of how you’re feeling.
I think taking care of yourself is the very most important thing, and I hope the relationship with a new neurologist might be a turning point for you on this awful journey.
Many gentle hugs.
Diana
Kerrie, I can totally relate. After having hellish migraine months in January, February, and March where I essentially checked out of my life, April seemed like I got my life and
“myself” back. I started doing things that reminded me of me; walking, hiking, swimming, got my haircut, bought new clothes, and made vacation plans. And then May came and I’ve had 11 days of migraine and I wonder what happened and what is happening? Was I crazy to plan those vacations? I get four weeks and I declare myself healed. How dumb is that? I should know better. You post is is oh so familiar. When things are bad they are bad and when they are good, they are great. There is no middle road. Thanks so much for bringing up the painful reality of this disease. Your blog is a lifeline. I sent today’s post to my husband. I am sure my migraine disease is equally hard on him.J
Thanks for sharing about your life. I find myself having a lot of up and downs as well. Your blog is encouragement.
Oh Kerrie me too! I hate it I hate it I hate it. Friends disapear, jobs get harder to keep and simpler to do dispite my intelligence. Family get frustrated and I get bored with the whole round a bout of get up go to work be bored at work have a giant headache try to get relief come home exhasted go to bed then get up and do it again and not much else. But what else is there to do but to keep trying? Keep hoping. And try to blaze a new version of yourself through it.
I’ve been reading your blog for almost a month now. I feel I really connect to you, even if our situations are somewhat different. I have had chronic daily headache and frequent migraines for almost 20 years now (and I’m just 32!). And I have fibromyalgia. I have a baby boy almost 2 years. This is where I struggle the most: being a wife and mom while being sooo sick and in pain. Do you have any blog suggestions for sick moms?? Thank you for all your posts. They really help me feel I’m not alone (as a military wife we move all the time and have no close support network…I’m getting my support from people/ blogs like yours!). ERiN
I completely hear you babe! I have been in bed with some nasty flu-like thing and feeling terribly discouraged about my life. When down, it’s hard to imagine any up. When up, I have perspective on both – I think that gives me pretty good indication of which is the “true” way of looking at things. That’s hard to when my down times seem to outnumber up times. Just trying to live in the moment and appreciate every crumb of goodness. A gratitude list is a good thing, too. I’m grateful to you for all your sharing and info and wisdom. You help me (and many others) keep going – so don’t forget that!
xxoo – Megan