Have you ever woken up and felt so tired you just couldn't imagine getting out of bed, let alone facing the day, maybe you have had the flu, maybe jet lag, maybe that awful fatigue after surgery. Well, let me tell you a little story about being tired.
The unpredictability of the ocean reflects in life
When my youngest was 6 months old I decided I wanted to do the one important thing in my life I hadn't had an opportunity to do and that was to go to college. I had previously and sporadically taken college classes but not in any shape close to studying for a degree.
With my eldest happily ensconced in Elementary school, my 3 year old very content in Preschool and my one year old safe at home with a girlfriend I hired to Babysit, I took the plunge and enrolled in a liberal arts college and declared a major in Interior Design. I was nervously excited! Having left school at barely 16 and having no formal art training I was trepidacious about going to college with people who had actually graduated High School. I was passionate about most aspects of Architecture, Design and Art, so I chose Interior Design because it combined my talents for decorating and sewing and my passions all together.
I started at 3 quarter time and took as many weekend and evening classes as I could so I was home most of the time during the day to be a "MOM" which was my "REAL" job. Everything went really well, I was a 4 point student (Yay Me!). That was so validating to me because no matter how hard I tried in grade school I never got good grades. I always had the sense that I was not good enough and plenty of people in my life re-enforced that too!
I really felt for the first time in my life I had come into my own. I had a loving Hubby, 3 beautiful, smart, adorable and happy children and a home we all loved; And I was embarking on a college degree that would lead to a fulfilling career once all the kids were in full time education. This was what I had worked so very hard to achieve thru all my earlier struggles. I was really rather pleased, albeit cautiously, with myself and quietly confident that nobody could take this away from me.
I was fit and healthy, I ran half marathon distances, I worked out at least 4 times a week weight training and swimming or step aerobics; I made sure the family and I eat healthily. This was the best time of my life.
So, imagine my surprise when I started getting ocular migraines and blurry vision to the point that it became debilitating. I tried to push thru it and continue on my very, very busy schedule but some days it was impossible. I thought, well I knew, I was over doing it; But you know when you get a headache even migraines, although I had never had a migraine before, that eventually they will go away and even if you feel ravaged afterwards you will be able to sleep it off, but unfortunately that didn't happen. I had my blood work checked for the obvious, thyroid panel, blood sugar, hormones etc but none of the usual suspects showed as the cause. In Fact, according to my blood work there wasn't anything wrong with me. I dragged on for a month or so, I continued driving to school at night with blurry double vision after a day of struggling thru taking care of the kids but I wanted to continue going to school it meant so much to me, I didn't want to fall behind and I knew that could happen really quickly. I shouldn't have been driving I could barely concentrate on anything and staying awake was a challenge.
But then the nightmare happened; so suddenly it came from left field. I awoke one morning and was feeling really weird, I just couldn't get out of bed, I was so tired, unusually tired, I had slept well, I always slept well, so why was I so overwhelmingly tired? I just wanted to curl up and go back to sleep forever. Of course I did get out of bed but with a struggle and pushed myself to have a shower. You know when you are feeling tired a shower always seems to help wake you up right, but not this time. I could barely lift my arms to wash my hair and I had to keep leaning against the wall for support I was too weak to stand. I stumbled out of the shower in a daze and was sobbing uncontrollably. I opened the door, next to the bathroom, that led to the garage, my Hubby was outside playing ball with the boys, as I leaned on the door frame for support, I could hear the joyous giggles from the boys and I could see one running away, with the ball, screaming in delight at being chased by his Daddy. The tears were streaming down my face and at that moment I knew deep in my core that life would never be the same again. I told my Hubby I needed to go back to bed, I just didn't have the energy to stand. I knew the feeling! I had had a really bad case of Mono a few years before, but you can't get that twice that intensely, can you?! So what was happening?!?!
I had to quit school! I could barely get out of bed to care for the kids let alone leave the house. It seemed that my dream was being replaced by a nightmare and I had no clue when it would end and it didn't even have a name. After many, many Doctors and Specialists visits and years of misdiagnoses living with this frustratingly debilitating illness it finally materialises as Chronic Fatigue Syndrome. And so, for the past 18 years I have lived with C.F.S. Chronic Fatigue Syndrome and for the past 16 years with Fibromyalgia.
You all know how hard it is to look after young kids on a regular basis if you are healthy so imagine what it is like when you are not able to get out of bed and your Hubby is away on a biz trip and there is literally no one to help! My friends either worked full time or dropped away because they didn't want to "Catch" it (It is a myth that either C.F.S or Fibromyalgia are contagious) All my family were 6000 miles away in England. So there was nothing I could do but literally crawl out of bed and try to do what I could to change diapers, feed little people, get the basics done as much as possible and lie on the floor all day hoping that the next day would not be as bad! Of course it was and the next and the next and the next!!!
Over the years I had to become very organised and very careful with my time and energy, it is no fun living with two debilitating illnesses that can knock you to the floor in a heart beat and leave you down for days, weeks or months at a time. I guess I count my self fortunate that this goes in relapse and remission but don't think for a second that a remission gives me the opportunity to have a normal life at all. It just means I have about a quarter of the energy of a normal 120 year old woman to get what I need to do done instead of lying on the sofa all day in a relapse.
Relapse or remission I am permanently exhausted, in chronic pain and have a constant headache. I can only describe it as the worst Mono fatigue you can imagine along with the extreme pain after major surgery, thankfully I am not a wimp but enduring this for so long makes even the strongest vulnerable. There are no cures for these illnesses.
It is debilitating, exhausting, painful, challenging, depressing but mostly downright overwhelmingly frustrating. Because I am constantly in the pattern of relapse and remission I feel like I am constantly mourning a life that could have been.
I feel trapped in a body that doesn’t work well for me and is constantly letting me down and is, at best, unpredictable but it is the only one I get so I have to make the most of it. :)
I try every day to be positive and realistic but the older I get the harder it is to do that. Yet, everyday, I am truly grateful that at least I have another day to try again. So, I think, when life throws you a curved ball, make lemonade. :)
Cheers, T.
© Teresa Chipperfield 2010
"Thy fate is the common fate of all,
Into each life some rain must fall,"
"The Rainy Day"
Henry Wadsworth Longfellow
Happy Painting/Creating! :) T.
16 comments:
Thanks for sharing this story. Curve ball or not, you are an inspiration (with or without your college degree). You had to give up school, even though it meant so much to you. Knowing that you have your wonderful children and husband who care about you and love will help you get through any hard times. I know what it is like to live with chronic pain. I don't suffer from it, but my husband does, and it's life-changing, that's for sure. This year has especially been hard for my family and I. In May, I wrote a blog post...http://2justbyou.blogspot.com/2010/05/lemons-and-life.html
You can read that, and hopefully it will make you smile. =) I commend you for sharing your story with readers. Sometimes sharing helps. ;) You posted beautiful pictures too, by the way!
~Kim
http://2justByou.blogspot.com
Wow, thank you so much for sharing this! I have had many of those same symptoms (including the ocular migranes, faintness, diziness, unexplained weightgain) I wonder if it is something simular.
another wow here...i have those same symptoms as erica too...i constantly beat myself up for not accomplishing more...thanks for your story i needed to hear it today as a reminder to be kind to myself and more organised and well it seems you have accomplished a lot even with such health issues!
I am so surprised and saddened by your post. It is so unfair and unexpected that one day you could be out there, working like a demon to reach your goals and then just be struck down by this. Your sense of humor and your blog just seem to indicate what we see as a normal life-whatever that is. I wish that I could be with you right now to talk about it even though we only know each other through blog comments. I so admire your ability to persevere through your haze of exhaustion and pain. You are quite a woman and a thoughtful friend. There are many of us out here who have disabilities that limit our capabilities and thank God for the internet and selling online for the outlet it provides. So many people are supporting themselves through etsy with social security or disability benefits as another piece as a way to stay alive. God bless you and make you whole again. We are here for you and your family (((hugs and kisses))
Like Plantress, your lovely blog and your beautiful work does not leave one thinking you are living with such debilitating diseases. I am so sorry for the burden you have to bear. Your photography is beautiful and I wish you the best, thank you for sharing your story!
Sometimes it feels nice just to get it all out, right? I didn't expect that turn in the story, especially with no happy ended of "I'm cured!" I am so glad you have found small ways to keep your creativity and energy alive while you are feeling low.
You are an inspiration every single day! I love you!
As I was reading, I was reminded of that saying, "while we're busy making plans, life happens". I know this has been a difficult road for you. I imagine there were and still are times when you want to give in. I admire your perseverance, endurance and your honesty. I also admire your ability to see and show us the beauty of life through your paintings and photography, even though life isn't always beautiful. Yes, you are truly an inspiration T. !!!!! :)
A beautiful and touching story, an inspiration to all.
There are so many things that afflict humanity and so much of it seems to fall under the terminology of either a mystery or not curable ... yet!
I had a dear friend who had lupus, she battled the disease for many years before she succumbed to it.
Thank you so much for all your lovely comments, this was a tough thing to write but if it helps others then it will have been worth it.
Keep making lemonade (He! He!)
Cheers, T. :)
Oh my goodness, Teresa...thank you for sharing this story, and I hope you continue to share it. I have a couple of friends who deal with both of these illnesses, and I myself have suffered from migraines for as long as I can remember, but I only have a teeny-tiny understanding of how hard it must be. "the constant mourning for a life that could have been" is so touching.
Like others who have commented, I would never guess your struggles, or that you are anything other than an endlessly creative woman and artist. You really are an inspiration.
Hi T,
What a touching story about your life! You have such drive and determination and are surrounded by a lovely family. You are an inspiration!
Your work is beautiful. I love looking at all your pictures and stories that you put on your blogs. I was very touched by your story and have been thinking about you since I've read it. I wish you and your family all the best!
T, this is an amazing post. Looking at all your beautiful work, you spectacular garden and hearing tales of your wonderful family, I would never in a million years have guessed you had such an obstacle to overcome. I think that means you are truly one of the strongest, determined and impressive people I've had the pleasure of "meeting."
Keep fighting! :) This bloggy friend is proud of you. ;)
Hey T. - You obviously received the blessing of a positive disposition as none of us suspected in the least you carry a chronic illness with you everyday. You are amazing ! I am reminded of that saying about being careful of what you say because you have no idea what someone is going through. Big Hugs to an amazing lady XOXOXOX, Patty
T - my heart is aching, my cup overfloweth, I had no idea this is your situation. I hope your children have been doing a lot of the chores all this time - my goodness, 18yrs!!! Aawww T we had no idea.
I'm so sorry to hear that you've gone through all of this. It's so easy to take your health for granted until one day you just don't have it. You still have all this amazing talent to share with us all and your fatigue doesn't seem to quash it down though :)
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