Creativity and Chronic Fatigue Syndrome
Today I’m talking to Annabelle, a woman I met online through our mutual association with the ETSY CAST street team. CAST stands for Christian Artists Street Team, and Annabelle makes beautiful and colorful coiled rag baskets, which she sells at her online store affiliated with ETSY.
When I found out she also deals with Chronic Fatigue Syndrome, I thought she’d be the perfect person to talk to about the importance of having a creative outlet when dealing with a chronic illness like CFS.
Thanks so much for agreeing to this interview, Annabelle. I think the first question that comes to mind is what your life was like before you were diagnosed with Chronic Fatigue Syndrome. Can you talk about that and explain a little bit about CFS and the symptoms and possible causes?
Oh boy. I’ll try not to get too emotional! I loved my life before CFS and really do miss it. I have to admit, talking about CFS is something I do not enjoy. I don’t want to be defined by an illness.
Before 2005 I was an energetic, physically active woman. I worked hard and long hours. With 2 children already, we had a baby when I turned 40 and I worked full-time and returned to school part time. I was always taking on projects at our church and our children’s functions.
I took care of everyone except me.
My life now is so different. My family and I have changed our lives drastically. Not only am I unable to work a job that I love, I no longer volunteer or go to school. Any activity will put me in bed for days with exhausting fatigue. And, many days I can’t even get out of bed. I have drastically reduced my activity as a means of coping with this illness.
That is what Chronic Fatigue Syndrome (CFS) is all about. And that is what over 800,000 Americans suffer with each day.
Do you have some days that are better or worse than others? Do you mind sharing what each type of day is like?
When the kids are in school, Mondays are always the worst day for me. It’s usually a day spent in bed. As silly as it might seem, just having people around can exhaust me.
I’m still trying to figure out the CFS thing. What I can do and what I can’t do is a gamble right now. At this point, if I’m overdoing it, I have signs and I know to stop and rest.
I’m sure having CFS can get you down mentally and emotionally. Does your creative hobby help you stay upbeat and motivated, and if so, how?
I started doing crafts after I went on disability with CFS. Being a Type 1 personality, it was so crushing to be inactive. Making my baskets is the one thing I can do sitting, and doesn’t require much brainpower. But, in the end, I feel a sense of accomplishment.
How important do you think it is for others who have CFS to enjoy a creative pursuit, and what advice would you give people who deal with this kind of illness?
It is critically important for mental health, especially, to find something, anything that one can do if they have CFS. In my experience, without a craft I’m sure that my emotional well being would be poor.
You see, in my case, having CFS was like going though a grieving process. I’m not sure that I am totally over it yet, but having to give up a life that was so filled with people and accomplishments is very difficult. You do grieve over what you once had.
People with CFS are typically high achievers. It’s so important that they find that “thing” that they enjoy.
I’m not sure about advice … I still think I’m figuring my way though understanding CFS myself. The one thing that has really helped, is … make sure you have a good support system behind you. You’re going to need it. There will be days that cleaning the house or doing a load of laundry is too much. My husband and kids are wonderful and have picked up many of the chores I once did. My parents and siblings are awesome.
If you don’t have a good support system, find one! Churches, on-line CFS groups, or a supportive friend can make a huge difference!
Thanks so much, Annabelle! Your baskets are beautiful, and I really appreciate you taking the time to talk about your experience with CFS.
Here’s a link to Annabelle’s ETSY store, where you can find more of her baskets and other items: http://www.handmadebyannabelle.etsy.com
Read her blog: http://handmadebyannabelle.blogspot.com/
Also at her blog, you can find a checklist to see if you may have CFIDS. http://handmadebyannabelle.blogspot.com/
5 comments
Hi Kelly –
Thank you so much for focusing your article on CFS. It can be such a debilitating illness and hopefully we will encourage people to understand the illness a bit better.
I hope your readers stop by and take the “Do you have CFS” checklist.
In God,
Annabelle
Learned some new stuff today. Hope I can be more of a support for you. Thanks for sharing.
Kelly – I’m so glad I came to visit your site! I really appreciated this interview. Oddly, I had just finished talking to someone tonight who told me she had CFS at one point in her life. There’s hope- she’s apparently in remission or cured.
Thanks for this insight into Annabelle’s challenges and the nature of CFS.
I was diagnosed in 2003 with fibromyalgia and chonic fatigue syndrome, after a lifetime (I was 43 at the time) of being a serious athlete. I raced and toured long-distance on bicycles, was a cave explorer and rock climber, ran, swam, lifted weights, etc. I was part of an interpretive dance troupe. I played tai chi and river rafted and kayaked. My favorite sport, if you will, was backpacking, and I backpacked, some of it solo, in almost half the states in the US. I also worked as a carpenter most of my “career”, and for a short time was a maintenance worker for a remote resort community in the mountains of Oregon. I had earned a degree in art, in my mid-twenties, but had put my art on the back burner, largely, since my job and my outdoor activities used up so much of my time (and money–my degree was focused in printmaking and darkroom photographic processes, and I could never scrape together the money for most of that equipment). Still, I did make art, when I could; I fell in love, shortly after graduating, with art quilts (nontraditional quiltmaking–Google it, if you don’t know it!), plus I did some creative woodworking, sculpture, drawing, painting, and straight-up photography, eventually learning Photoshop and Paint and falling in love with what I call “digital painting”.
Coming down with illnesses that shut down most of my outdoor activities and robbed me of my livelihood was unbelievably hard. I literally grieved, for years. And, bizarrely, I was living with a man for most of the first five years, after getting sick, who was abusive, physically violent but also (and more importantly) verbally and psychologically abusive to me. So crippled was I, by my pain and exhaustion, that I felt–I believed–that it was impossible for me to escape from my torturer. The years crept along, and my self-esteem and will to live eroded to the point that I felt I had lost my very self. I could no longer trust my intuition; I believed I was helpless; I could not see the future with any hope whatsoever. I wanted to die, and in fact, I tried, ineffectively, two times, to end my life.
But a chat, on my computer, one day when my partner/abuser was busy elsewhere, woke me up and gave me that one last scrap of energy and motivation, and I pulled together my wits and every ounce of energy I could muster, and without help (he had so isolated me from the world that I no longer had any friends) I began to act.
I packed up as much of my stuff as I could get into my little four-wheel-drive pickup truck, which had sat, rarely used, for five years, and headed to the mental health center I had visited after my suicide attempts, and the worker there helped me find a list of shelters for victims of domestic violence. There I found understanding and support, and began to heal, emotionally.
I’ve done much more healing, in the two years since I escaped the nightmare of domestic violence and abuse, both mental and physical. A year ago, I found, in an incredibly unexpected turn of fate, a marvelous, wonderful, beautiful lover, who took me into his home and helped me re-learn the simple beliefs I’d lost hold of: I’m a good, unique, wonderful person; I’m smart and funny and talented (my talents amaze my new friends, and they amaze me too, often…I look at something, and think, “I made that??”); I’m extremely loving and generous and deeply empathetic; basically, that I’m a worthwhile person and that I can, and should, love myself as much as I love others.
I’ve learned, too, about my illnesses and how to manage them. I’ve let go of what I can’t do, and am excited, every day, about what I can. Best of all, my lover gave me a whole room–and plenty of time–to make art, and now, though I choose some basic domestic goddess activities as part of my life (because I love making his home a happy, nurturing place, and generally making his life better, in whatever way I can), my life is now focused on my creative self. Art was always incredibly important to me, and not acknowledging that importance, for years, definitely too its toll, at the time, on my quality of life. Now I feel, despite my body’s limitations, that I’m thriving. That is an amazing feeling! I’ve learned to manage my pain, somewhat, through nutrition and gentle exercise, and my fatigue through the same, plus lots of rest. But the most important thing I’ve learned is to forgive myself–and the powers that be–for my situation. I’m beginning to think that there’s a life lesson in this, and that, just maybe, I may be able to do some good in the world that I might never have slowed down to do, when I was always pursuing the next big achievement. I’m able to wake up each day and be in the moment, and absorb the beauty around me, and channel it into play (I think of my art as play!). How many people are that lucky?
I welcome, by the way, e-mail, especially from other women with my issues. The importance of support, in all of these issues, is so very great, and I would be happy to lend an ear, and a shoulder, if I can.
Terri
Thank you so much for all your comments. Terri, what an amazing story, and it just testifies to the healing power of our creativity as well as unconditional love and acceptance. Thanks for sharing! I checked out your store at Etsy–beautiful items! http://www.heronmoon.etsy.com
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