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Stories submitted to SolveCFS
The following stories were submitted by visitors to our site. Edited only for syntax and grammar, these stories reflect the views and experiences of individuals who want to SolveCFS. We’ll regularly rotate stories, so return often!
Who is in control of my day - me or CFIDS?
I have had CFIDS for several years and it dawned on me the other morning that I was waking up each morning and checking my body. How am I feeling today? Do I have a sore throat, headache, do my lymph nodes hurt, what part of my body is tingling, where is my pain today? Then after I know what hurts or how fatigued I am, I decide how I will live this day. I need to do this chore, but if I do that, will I feel like getting dinner? This is how I have been living my days.
But the other morning, I decided to see what would happen, if I changed my thought pattern. I decided what I needed to do or wanted to do that day and then made my decision as to how I was going to handle the day. Who would be in charge of my day, me or CFIDS? I recently read an article how we need to reserve our energy. Now this will take planning on our part. We will need to think ahead of our day and decide how we will spend our energy. It is like putting money in a savings account. Our energy will accumulate, even if it is a small amount, but it just might pay off.
So I have made the decision to be in control of my day, instead of letting CFIDS be in control of me. I will look ahead and decide how much energy I need to reserve to be able to do certain chores or go to certain places. This will all be trial and error, but it is worth a try. It may be wise to keep a journal, as to how we spend our day. Did I even get to do one thing that I wanted to do. I need to dwell on the positive, instead of thinking about what I cannot do, or even what I used to do.
I will give you an example. Today, Saturday, November 14, 2009 I want to go to our church bazaar. My husband wants to eat lunch there. I need to wrap Christmas presents. My family is celebrating Thanksgiving and Christmas together, which is actually a lot of work. And I am afraid I cannot do it all.
So when I think of today, I tell myself, rest for a couple of hours and go to the church bazaar. After I come home, rest a few more hours and then do some wrapping. I will not get dinner this evening, we will eat leftovers, because I have spent my energy. But guess what, I was in control, not CFIDS.
I think I will be a much happier person, if I can dwell on the positive and look at what I have done, rather than look at what I cannot do or how I feel today.
Also, if you are like me, you get up each day wondering when is this awful stuff or CFIDS going to leave my body. Just maybe if I change my thought pattern, I can get on with my life, even if it is limited. It is worth a try.
E. Baker
Learning to let go
At 42, a single mother of two young teens, I was working long hours trying to get ahead at work and to keep paying my bills. I had a social life, friends, I exercised, had hobbies, and loved to garden. Being single, I ran the household myself and cooked healthy meals and baked goodies for the family. I was vibrant and fun and knew I could date if I were so inclined. In April 2003 I became very, very ill. I experienced excruciating exhaustion like I had never felt before. I had unrelenting headaches, sleeplessness, an inability to concentrate, and pain and stiffness over my entire body. I had countless doctor appointments, iron and B12 shots, blood tests, ultrasounds, MRIs, and specialist appointments. After being sick for seven months and trying, unsuccessfully, to continue working and keep up with the household chores, I was taken off work. The doctors were unable to diagnose me and, because I felt like I was dying, I prepared my will. I spent my sleepless nights writhing in pain and worrying about how I was going to pay the bills, if I’d have to sell our house, and wondering what was going to happen to my kids and I. My kids were old enough, thankfully, to learn how to make themselves some meals and do their own laundry.
One year after becoming ill I was diagnosed with CFS and FM. Although it was good to have a diagnosis (and to find out I wasn’t dying) hearing there was no cure and I had to learn to manage my illness was depressing. Over the next year I watched my career, my social life, and most of my friends all fade away as I laid in bed barely able to look after my children or household. I spent my days sleeping or staring out the window, and my nights writhing in pain.
The movie "What the Bleep do we Know?" started me thinking about my attitudes and their affect on my body. I realized that being bitter and depressed was negativity affecting my body and mind. Did I want my negative thoughts and feeling to contribute to my bad health (note: not cause my bad health, but contribute to it). Or, could I accept my circumstances, learn to live with it, and find things to feel positive about?
I realized that I had to Let Go of my "former self", my "former life", my “former priorities”, and my "former goals" and re-evaluate who I was NOW. I had to stop thinking about everything I could NOT do anymore, and concentrate on what I COULD do now. I had to stop lamenting over my losses (loss of career, loss of friends, loss of social life, loss of health, etc.) and I had to start appreciating what I did have.
And the more evaluating I did, the more reasons I found to be positive. Sure I couldn’t go for long outings with my children, but we could hang around in my bedroom and talk and laugh and play games. Yes I could no longer garden, but I could appreciate reading gardening books or magazines. Yes, I had a bad day yesterday but today wasn’t too bad. Yes, I could only vacuum one room per day, but I had the luxury of having to lie down and read a book afterwards. And slowly I came to the realization that when I was healthy I was also incredibly busy and never stopped to smell the roses. I never had the time to lounge around with my kids, or read a good book, or flip through magazines. And when I was healthy and busy I was driven to want “more” and “more” and never stopped to appreciate how much I already had.
Over the next few months my positive attitude did change me. I continued to learn about my illness and my limitations, got a handle on my sleep disorder with sleeping pills, regulated my thyroid, learned to pace myself and balance chores with rest, and found that stretching and mild yoga is the only thing that gives me any pain relief.
I returned to work in a lower paid, part-time position exactly two years after becoming ill. My children grew more independent and I believe they became more compassionate after having the experience of caring for someone who is ill. Unexpectedly, I met and eventually married a wonderful, supportive and understanding man. I have stretches of time when I feel really good and have to remember not to over-extend myself. If I do over-extend myself, then the exhaustion, pain, headache and brain fog flare up and I am harshly reminded of my limitations. But good days or bad, I still try to focus on the things I am grateful for, for old beliefs or mind-sets that need to be Let Go, and for those special moments in each and every day that need to be treasured.
Thank you for all your efforts to make CFS understood.
Janet
The day I was diagnosed. And a bit more.
I was absolutely dumbfounded. Definitely a “this can't be happening to me!” moment. What do you mean, no real treatment? I was lucky; my doctor knows CFS is physical, not mental. I've been housebound since November, 2002; before learning what was wrong and the necessity for not pushing my body, I pushed. My husband and I walked our dogs in the park, a little over two miles. That's the last time I felt “normal.” The crash afterward was frightening. I'm getting better, now, slowly, with lots of pacing and patience. My life now is mostly laptop living. I play video games, my avatars gardening, going to work, fighting giant spiders, exploring, saving the world, helping friends, whatever, depends on the game I'm interested in and able to play. Sometimes brain fog makes it impossible to play World of Warcraft or similar games, then it's off to Sims 2 or simple Facebook games. Yep, stretched out on the couch, under the laptop. Sitting upright can be a mistake. I'm a 55-year-old “girl gamer.” Submitted By: Debbie
Single Mother with CFS
I am a single mother of 4 children, and I also have had CFS for 10 yrs now. I have been raising them without a husband, without help, on my own. I can no longer skate and play with them like i used to. Some days I am too tired and weak to clean the house, do dishes, or drive. I miss me; I know my kids miss their mom. Hard to tell a child you can't go to a party or things like that because you are not up to it, when all the other parents are. Submitted By: Dayna