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As Planned - A Personal Fibromyalgia Story

 

 

 

 

By Michelle Greenlee

Originally published by Suite101.com

 

Imagine having your whole life planned out before you, choosing your every move and controlling your own destiny not falling prey to circumstance or coincidence. Marrying young to begin a family. Having your children and keeping them home with you until they are old enough to attend school. Spending your time pursuing your own interests and filling your heart with satisfaction over the days work now finished. Preparing for your first day returning to the workforce after leaving your youngest child at school for the first time. Within a very short time you are back in the game, almost better than when you left. Your experiences at home have made you a better employee and you are being rewarded for your efforts. You've done everything on your own timetable and have the satisfaction of knowing that you chose to be where you are and you actually enjoy it. Then, one day you notice that you're losing stamina and you don't seem to sleep as well as you once did. There are no babies at home so it can't be the late night feedings and linen changes. You ignore it for a while until it relents, and lets you no more. Anticipating your return to life as usual, you make the appointment. Though it seems all will be fine you soon realize what you've been told. It's not the cold or the flu you were sure would pass. It's not even exhaustion you tried to make yourself believe that somehow it could be. The pain you feel inside is not from a broken heart, but somewhere else. It doesn't seem to ever really go away. The diagnosis is not something you were prepared to hear. "Fibromyalgia", your doctor says to you. Confused you ask for a repeat of what has just been said, the same word comes from your doctors lips as before. So how long will it last? When can I be better? These are the questions you need answers for and never hear. Then the script from your life reads "Exit stage left: Your life, all that you have worked for, all that you had planned, everything you controlled." Your grasp on reality, all that you believed to be true is released. "How do you deal with something like this? How do you get through it? What is there left for me after this?” you might ask yourself, sobbing into your pillow the first night. Maybe you never really accept it but it seems that you do so you begin to think bigger than your disease.

This is what happened to Yvette O'Dowd. Living with a previous diagnosis of Multiple Sclerosis (since 1995), in 2001 she got the news that she also had Fibromyalgia. Fibromyalgia is similar to Chronic Fatigue Syndrome, sharing many of the same symptoms and a mysterious cause. When asked if it has been tough to accept her disease her reply was "We started our family young and planned to 'make up for it' later. So everything was going to plan, I'd stayed home for 12 years, was back in the workforce with a great job, we'd finally bought a house, a second car etc - and then my health hit rock bottom and I had to stop working. Bam! No money. Kids to educate. [It left] Me feeling restless and sort of purposeless. It also put a stop to a lot of dreams. I get tired so easily, even on day trips. I would love to travel [but] I get frustrated by the stuff I want to do and simply can't." Her direction in life had to be completely changed. Having everything under control, knowing exactly what she wanted to do and when was a big part of life. Since she's been unable to do all that she wanted she has dealt with depression and the realization that she is not what she once was, and will likely never be that way again. As her father's caretaker until his death in January 2003 she said that she was living on "borrowed energy" and "crashed" as soon as possible, unable to fully handle the emotional and physical strain. The additional strains of family obligations and helping her only sister left her in a less desirable state she had been in before. She said that she is just now getting back to a feeling near what she was before the events with her family and father almost 4 months ago.

Though Yvette has been through a lot emotionally and lives with a painful disease she still takes time, precious time, to do things that fulfill her in deeper ways than she could have imagined. She does more than what you might think. Instead of surrounding herself in her own pity and waiting for something to change, she's busy doing something. When I asked her about her hobbies I was given a long list of activities. Here's her reply to my question "Hard question! Let's see. First, I am a volunteer breastfeeding counselor, which gives me lost of avenues to pursue. I give a lot of time to this. I am an avid reader - anything and everything! I enjoy home decorating and gardening. I am into family history, scrap booking, practice yoga and meditation, spend a lot of time on the internet, am learning web design... and I write!" Yvette is a passionate person and her involvement in groups that are related to her cause shows that. She's working on a webpage for a local breastfeeding association chapter. Local is Frankston,Vicortia, Australia. Though she didn't list it in her reply, she's also a sort of super-organized mom. Her household is set up so that she plays more the role of coordinator rather than sole-caretaker. Guests can make tea or coffee alone and the children do all their own laundry, that's 3 children. Each has their own laundry day and is expected to do their share of the work around the home as well. Technology has aided her as well. Shopping once a month online for meats, which are frozen for use the rest of the month, and groceries save a great deal of time and effort. Which reserves her energy for the really important and fun things she ejoys. Fruits and vegetables are delivered once a week. Yvette says this conserves her energy for the really important stuff. She's modest about all that she accomplishes in a day but I am fathomed by her strength and stamina. As a healthy mother of three I find little energy to do even half as much as she! All this is great and wonderful but Yvette reminds me of just how careful she must be with her body. She says, "I have to pace myself. Energy is a commodity, for me. I can save it up by resting and expend it by overdoing things. So, planning is important. If I have something coming up that will draw on my reserves, I will take it easy and get a lot of rest in advance. Afterwards, I will get extra rest to make up. I make sure I get sleep by taking medication." She has a schedule of her daily activities that doesn't leave anything out. Even though she's busy and very accomplished Yvette says that she rests a lot. Her bed is a sanctuary and it's not uncommon for her to lie down in three or four blocks during the day. Going to bed at 8.30pm unless guests are over or she's been out. She typically watches T.V. and reads until about 10.30pm is in bed until about 9.30-10.30am the next day. Yvette says that it may appear to be cushy, laying back with others at her beck and call, but it's not. "[The] pain that is so consistent and yet not related to an injury or other visible cause...People don't seem to comprehend,” she says. Yvette's story is a reminder to us all that our lives cannot be fully controlled by us but that our reactions and choices can be.

 

 

 

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