Wednesday, May 13, 2009

My Story: Living with Chronic Fatigue Syndrome & Fibromyalgia

I signed up to blog for ME/CFS Awareness. I found this on RachelCreative's blog for the 2008 Awareness day. Here is where you can find more information about blogging for ME/CFS Awareness. May 12th was ME/CFS/FM International Awareness Day. I'm a day late, but better late than never. Below is my story.

Yesterday was ME/CFS/FM Awareness Day. For many people, I think it is very difficult to understand invisible illnesses such as Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Myalgic Encephalomyelitis (ME), Lupus, & many other 'invisible' chronic illnesses. I could tell you all about what the 'experts' say it is...what the internet says it is...I could do all of that research & tell you all the facts & figures...but today, I'm too tired to go to all that effort. The truth is...something gets lost in all those facts & figures...WE, the people living with ME/CFS/FM & other invisible illnesses get lost in all those facts & figures. So today, I will share something I do know experience with CFS/FM...I know this story well. I've lived it for 10 years. Just saying that makes me tear up.

I was diagnosed with Chronic Fatigue Syndrome & Fibromyalgia in 2000. However, my health challenges started a year prior in December of 1999. That December is when I got a very bad case of flu....& I never got well. It was like a light switch. One day I was well...the next, my whole life changed. Before the flu...I used to jog 2 miles at least 3 times a week...I hiked...I did anything I wanted to. Going to the store, meeting friends for a night out, playing with my daughter...all were a breeze. I never had to think about it...I just did it & lived my life. After the flu...I couldn't even walk up a flight of stairs. I was exhausted. I couldn't catch my breath. My heart pounded. Everything hurt. And that....was just the beginning of the darkest time in my life.

Over the next year I struggled to finish college. I was going to school for my graphic design degree & I was determined to finish it. After all, I was probably just over tired because I was in school. I figured it would be over when I graduated, I'd take some time off, rest up, & then be ready to take on the world again. I did a lot when I was in college...I excelled for the first time in my life. I ran a student gallery, I was on the Dean's List, I got good grades & my instructors gave me great encouragement saying I had a promising future in art/graphic design. I graduated with honors in May 2000....& that...was it.

I was also a single mom, so I struggled to care for my daughter while finishing college...she was 8 at the time. I lived with my parents so I could go to school. They helped me with my daughter, which was a blessing in many ways. I don't know what I would have done had they not been there. The down side is that often times between school, homework, & being exhausted...I didn't see my daughter much even though we lived in the same house. Even now this brings sadness to my heart...I feel like I missed out on a lot of things with her...

In March 1998 I met my now husband, Tony. I was well when we met. Falling in love with him was easy...magical...& everything you'd imagine from one of those romantic soulmate kind of movies or novels. You know the ones...That was a very happy time. Concerts, camping & weekend trips, day trips, hiking were all part of our life. He proposed in October of 1999...Our whole future laid before us...the future looked bright...Then, I got sick December 1999. Both of our lives changed...dates now consisted of me going over to his place, watching movies, & me falling asleep with my head in his lap. Tony, has taken care of me every step of the way... He has seen me at my worst...& the worst was actually pretty horrible. He never left my side, he never treated me like a burden, & he always believed me.

That's the thing about CFS/FM/ME...many times, people don't believe that you're sick. After all, you don't LOOK sick. I've heard it's all in your head, you're just depressed, you're a hypochondriac, you're lazy. Comments like these are extremely hurtful to those of us who live with these kinds of illnesses. Sadly...these kinds of comments come from friends, family, & even doctors sometimes. (If your doctor ever says anything like that or says that he doesn't know what to do for you...find another doctor). This just adds to the pain of living with CFS/FM/ME...we end up questioning & doubting ourselves...we start believing that it is our fault...we feel shame & guilt...why can't we just snap out of it...maybe it is all in our head...It takes a toll on our self-esteem & our worth. I think it is pretty safe for me to say NO ONE chooses to live like this. I think one of the hardest things about illnesses like these is the isolation...not only being isolated from the world by being at home resting, but the isolation that comes from a lack of people (family, friends, doctors...) understanding that what we are living with is real. It is real. I would not wish this on my worst enemy.

I have now lived with CFS/FM for 10 years. At my worst, I walked with a cane & felt 90...but I was only 37. There were weeks at a time I did not get out of bed. The fatigue was debilitating. The worst days felt like there was an assault on my body...everything I'd been hit by a truck...or a train...I would be numb, almost zombie like...forgetful to the point I have chunks of memory missing...not able to find the right words...having to describe the round thingys that make a car move because I could not remember the word tire. Dizziness & vertigo severe enough that I couldn't (& sometimes still) can not body not moving the way I want it to...stumbling or falling...anxiety, panic attacks & depression. (A side note here about depression -- there is a difference between being depressed which causes one to feel physical is entirely another thing to feel so horrible that one would then become depressed. Trust me, when someone lives with a chronic painful condition for 10 years...they're not going to be in the best of moods.) There were heart palpitations which were severe enough that I went to the hospital...Irritable Bowel Syndrome, which if you have not experienced, feels like a cat is trapped in your gut clawing it's way out....Pain in every joint & muscle, exhaustion that was so bad that I didn't think I'd be able to take another breath...I couldn't sleep & when I did it was not a restful sleep...At times I felt like I was dieing. And all of the symptoms I've described are just the ones I can remember off the top of my head. A lot of those 10 years I don't even remember. Tony says it's better that way because at times it was pretty horrible. Thing is...I also don't remember things like birthdays, holidays, chunks of memories of my life, my marriage, & my daughter growing up are just gone.

There have been some really good times though. Times when I felt amazing...when I'd feel like a well person again....Like I could take on the world. These times may last a day or several weeks...I cherish them...I feel hopeful that maybe that day is the first day of me being a well person. I go & do things...I treasure the moments....the sun on my face...the little things that I didn't notice when I was a well person. And at times surprisingly, my body bounces back fairly well from this burst of activity...sometimes. When a relapse sets in's a cruel reminder that steals a bit of that hope that sparkled through my body just days before. This is when I have to remind myself to be patient with myself...that I am OK despite this illness that ravages my body. That things will be better. And if I can't see it...Tony reminds me of it.

It takes courage to live with these illnesses I've been diagnosed with. In many ways CFS/FM has been my teacher. Before this diagnosis I was focusing on the job, the career, the bling of life...what face I showed to the world...if I was successful or not...honestly, I was shallow. Living with this illness has caused me to get real honest with go unburden my heart of a lot of baggage. It has challenged me to look at who & what is important in life...what isn't...what can wait...It has taught me patients, perseverance, strength, courage, compassion...& in the end I believe that I'm a deeper, fuller person for it. I have learned to go with the flow & ride the waves of my energy levels. I have learned ways to work with & around it....not that it's always easy or that I always let things flow...after all, I'm just a work in progress. I have come to understand that I am not my illness. I will never say, "I have CFS/FM." I was diagnosed with CFS/FM...I am not CFS/FM...CFS/FM does not define me, my heart, or my is not who I am. I have learned to live with this survive & thrive in my own way.

These days, I'm focusing on doing what I love. I've always wanted to be an artist. So now, slowly but surely, I am working on creating art in my home studio. Tony converted our garage into a studio for me so I would have a space to work. (I named it MoonWillow Art Studio because we have a very old Willow tree in our front yard & the Moon passes behind it in the night sky.) The act of creating helps my healing process. It brings a spark back into my body & reminds me of the feeling of hope, of being alive. I had my first art show July 2008 at a local gallery. That was an amazing time...that was the last time I felt really good. I've been dealing with several relapses since August 2008, which slows down the progress I'd like to be making in my studio...but, that's when I remind myself that it will come in it's own time. I am making progress...after all, I no longer walk with a cane & my symptoms are less frequent & less severe. Currently I am working on opening an Etsy shop to bring my art & creative efforts to the marketplace. This is a bit of a daunting task as my brain doesn't always comprehend everything I'm reading & what I do read, I forget. It's a work in progress & sooner or later my shop will be open.

I have also discovered an interest in writing. I never thought of myself as a writer, but it seems to be something that is knocking at my door these days. Whether I'm any good at, I do not know...just the process of writing is intriguing though & I'm excited to explore it more. Actually, I have a couple of horror novels whirling around in my mind...we shall see if they come to be. It's something for me to look forward to. Which, I think is important for anyone living with illnesses like these.

It's hard to share this much about my life with CFS/FM. This is just a bit of what I could write. I feel hesitant to publish this to my blog. The fear of not being understood or believed...What will you think? What will my friends & family think? It's embarrassing in a show my soft admit that I struggle with this. It's not something I often talk least not the sadness & suffering part of this illness. Most of the time I focus on talking about the good that has come out of this. I do my best to be a glass half full kind of gal. Revisiting the pain of CFS/FM in my life is difficult...the feelings of sadness bubbling to the surface...bringing tears to my eyes. However, if I don't talk about it...if other people with illnesses like this don't talk about it...The world will never know & we will continue to feel isolated. I hope by me sharing my story, it will bring some awareness to CFS/FM/ME & other invisible illnesses.

For those of you out there that also live with these kinds of illnesses, I hope that by reading my story you know you're not alone. If you feel moved to do so, I would love to hear from you & know your story. From one survivor to another...Never, never, never give up. The world is a better place for having you in it. You have worth. This quote by Mary Anne Radmacher has gotten me through many hard days, "Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow".


Linda S. Socha said...

Karny....I am so sorry you are having to deal with these issues. My sister has dealt with fibro for years and she is just now 50.

I love that you are so incredibly talented
and yet still dealing with this. I am going to share your blog site with a friend dealing with some of these issues also

Maggie said...

Thank you for posting your personal story - I'm sure it will help others to understand what it's like to live with ME/CFS.

Best wishes from grey and dampish Wales,


Funky Fairy Shoppe said...

I love you! I know how hard it is to open up and share the emotions that go along with your health challenges. Miss you!

Sonia ;) said...


I hop all is well darling....My daughter adores ya...Go by my blog sweetie...drop me a line and say HI..

Sonia ;)

candytuff said...

Thank you so much. I have had a hard week with CFS and was wondering if anyone in this city, country or world could understand why I cry before I go to bed. Why getting up is one of the hardest parts of my days. That I listen to people complain about the gym and wish they knew how lucky that they could go. I fell on to your blog and I shed a few tears as I realized I am not alone and there are others out there who understand. So tonight I may not roar but I will whisper with all my might that "i will try again tomorrow". Thank you for hope and encouragement

Jessica said...

Thank you so much for this post! I am 25 years old and have lived with CFS for the past 4 years now. I also became sick while I was still in school. Finishing my BFA in Industrial Design was one of the most painful things I've ever done, but I'm so glad I did- even if I'm too sick to work in the field.

So many of the things you said were so comforting to hear- they are things that I've thought over and over. It's good to know I'm not the only one.

I look forward to following your blog more! While I understand why you might hesitate to post about your health, I'd love to urge your to do it more often! The world needs to understand what other people are going through.

Thanks again. You have made my day in bed a little brighter.

Dawn said...

What a brave soul you are showing us your soft under belly... I feel your pain in your post - you write so eloquently, I have known a couple of people with ME and it is such a sad illness to live with cos as you say it is not something you can see... your quote at the end is so true...

Write your book, you write so well and enjoy your time in your studio too xxx big hugs xxx

Lenny P. Robert said...

Hi Karny,

As someone who can relate and has been affected by CFS for the last 7 years (started when I was 25) I am so grateful to read about another artist's struggles. I've managed to continue painting despite all of the illnesses setbacks and have also started a small guitar making business which luckily affords me the luxury of working around my own schedule.

Your words have inspired me and I agree with dawn that you should write some more as you seem to have knack with words...

It is also great to read other peoples accounts on this page and to realize that there are others out there...that we are not as alone as we think we are.

All the best,


Lenny P. Robert said...

Hi Karny,

As someone who can relate and has been affected by CFS for the last 7 years (started when I was 25) I am so grateful to read about another artist's struggles. I've managed to continue painting despite all of the illnesses setbacks and have also started a small guitar making business which luckily affords me the luxury of working around my own schedule.

Your words have inspired me and I agree with dawn that you should write some more as you seem to have knack with words...

It is also great to read other peoples accounts on this page and to realize that there are others out there...that we are not as alone as we think we are.

All the best,


Anonymous said...

It would be great to see you blogging for ME/CFS Awareness again in May 2010.

Remember to sign up to the list at so we can collate a list of those who are blogging for ME/CFS Awareness this year.