Fibromyalgia & CFS Awareness Day ~ May 12, 2010

 

As a contribution to Fibromyalgia and Chronic Fatigue Syndrome Awareness Day, I would like to share my personal story with you.

At the age of 26 (2002), I gave birth to our first child. It was not long after his birth that I was diagnosed with Fibromyalgia. Looking back, there were undoubtedly signs and symptoms of FM, long before my diagnosis. At that time, I knew very little about this illness other than what I was experiencing first hand. For the most part, my life remained relatively normal. Flares would come and go, and the days, weeks, and sometimes even months in between were completely pain free. People with Fibromyalgia can experience periods of remission. If you know someone like this, you may find it difficult to understand how others are totally dehabilitated by Fibromyalgia, and seemingly unable to do much of anything. Even as a person diagnosed with FM, I could not, at that stage, fathom why people stopped working and gave up so many activities they once did, "just" because they had FM. I had FM, and I was still working, exercising, going for bike rides…etc. So what? I’d stiffen up, but then within a few days, I’d be back to myself again. It wasn’t the end of the world!

Back then, I had no concept what so ever how severe and dehabilitating FM can be, and how deeply it can affect one’s life. It was unimaginable to me, that one day my life could be, and would be, turned upside down by this illness. In all honesty, the possibility never crossed my mind.

I’ve always thought of myself as a strong person, and had been able to keep forging ahead…plowing through the pain. Never did it occur to me that one day I would physically be stopped in my tracks no matter how hard I would resist this from happening. All the positive thinking and motivation in my being could not have prevented this from happening. Putting on my brakes and accepting my limitations at the
very first signs that my symptoms were worsening, are the only ways I believe that I may have stood a chance to avoid the condition FM put me in, just a few short years ago.

I continued to work until I was about 6 month pregnant with our second child. My plan had been to continue working closer to my due date, however my body had a plan of its own. As a result of severe ligament pain and sciatica, in addition to FM symptoms, I had to focus on getting through the rest of my pregnancy without causing more issues than I was already dealing with. I returned to the work force when our youngest was 10 months old. In order to avoid putting the children in daycare, my husband and I decided that we would work opposite hours. I was home during the day with our children, and then zipped off to work when my husband got home from his job. It made for long days, and little sleep.

Up until a year before I had to stop working, I remember spending countless hours, taking hot baths with essential oils, and feeling like I was drowning in the pain. Most nights, I was unable to fall asleep because of the intensity of pain inflicted on my body, which made it next to impossible to relax enough to fall asleep. No matter how physically, mentally and emotionally exhausted I was, insomnia prevented me from getting a restful night’s sleep that my body required to repair itself. I would find myself getting back into the bath in the middle of the night, often having a glass or two of red wine, desperate to get even an ounce of relief, so that I could manage some sleep. In the morning, I would wake up feeling like I had not slept at all. Restorative sleep became impossible to achieve, as insomnia took over.

In my mind, I just had to keep pushing myself and finding a way to get through, and eventually it would all work out. After all, everything I read said that FM is not a progressive illness, so what’s the worst that can happen? I CRINGE now thinking how naive and uneducated I was about my own health issues! Who the hell did I think I was? I’m not invincible or indestructible. I was however chronically unaware!

In the previous month or so leading up to when I stopped working, I worked it out with my employer to cut back my shifts, but even one shift a week was no longer physically possible. The most exhausted I had ever felt for a long period of time, was when our children were infants, as most new parents do. Little did I know the sleep deprivation I experienced as a new Mom, was minor in comparison to what chronic fatigue syndrome feel like. Chronic fatigue reminds me of when I was at the worst of mono, at 17 years old. I remember feeling so drained, that I didn’t even have energy to eat or get in the shower. At least mono only lasted a few weeks!

In June 2008 my life took a dramatic change of direction. With no other choice, I took a sick leave from work. By that point, I was barely able to get out of my bed or make my way around the house, let alone care for my 2 young children. I still have no idea how I survived that period of time. My intention was to take a month or two to get my symptoms under control. My goal was to be able to return to work part time, despite the fact that my doctor did not believe that was how things would unfold. My doctor knows how self driven and hard I’ve always pushed my physical limits, and was trying hard to get me to acknowledge the fact that I was very ill by this point. She felt that it was going to take more than a couple of months to get back on my feet. In fact, she admitted that she wasn’t even confident that I would ever be able to return to work, after having crashed this hard. That was NOT what I wanted to hear and I was determined to prove her wrong. I refused to give up on myself so quickly! My doctor had been encouraging me to stop working, long before I did. I can be rather stubborn at times πŸ˜‰ Just ask my husband! πŸ˜‰

So, here we are. It has been two years since I stopped working. I’m still fighting these beasts along with some other conditions which have developed in the last 2 years. I have not been able to return to work since the day I took a sick leave. It has been a rough ride, and the road ahead is a long and bumpy one, but I refuse to lose hope that one day, a cure will be found, or at least an effective treatment, that can improve my quality of life.

The last couple of years have been filled with major adjustments. Not just for me, but for everyone who is active, in my life. I’m extremely blessed with friends and family who have been supportive. I cannot express in words what a positive effect that has had on me through this journey.

My children accept me the way I am, better than some adults I have known over the years. They love me for who I am, unconditionally. The beauty of young children is their love is so pure, and they see past physical limitations.

I have been very fortunate to have married such an amazing man! I honestly don’t know where I would be, if it wasn’t for my husband, or how I would have survived everything I have, up to this point. My husband is my rock, my confidant, my best friend, and the love of my life. He knows me better than I know myself sometimes πŸ˜‰ This has not been an easy journey for him either. He has mastered the art of understanding and the strength to support me, and has stuck by my side every step of the way! We refuse to let my illnesses get between us. If anything, I feel that it has brought us closer together. I’m very blessed.

I hope that sharing my story, has helped to give you some insight to what your loved one may be going through.

Knowledge truly is power! Educating yourself is the best suggestion I can give to anyone who is newly diagnosed, or who has a loved one that has been diagnosed with FMS/CFS. This being said, make sure you are getting your facts from well known medical websites.

Another suggestion I cannot stress enough, is how beneficial it has been for me to get involved with online communities, so that you can meet others who understand first hand, what you are going through. I have met SO many wonderful people through blogging, and online communities.

 It is my own personal experience and belief; FMS/CFS patients NEED to be a key player on our own team. WE need to continue to educate ourselves, and communicate effectively with our medical professionals, friends, family, and coworkers. People do NOT understand the full impact of Fibromyalgia, unless they live with it themselves. Fortunately, we have amazing people in this world who do everything they can to understand it the best they can, in order to support their loved one(s). Sadly, there are still way too many of us who suffer silently and alone. Many fibromyalgia survivors are abandoned by their "friends" and family members. I have yet to meet a single person with FM or other chronic invisible illness that has NOT experienced this to some degree. That is absolutely heartbreaking to me. It is our responsibility to communicate with the people in our lives, if we expect them to grasp any amount of understanding about these conditions.

Bloggers Unite is a website, where people come together to promote awareness as a group, for different causes. This year, I created an event for Fibromyalgia & Chronic Fatigue Awareness day, and am so grateful to the 24 bloggers (as of when this article was published) who have joined me in building awareness today. Please take a moment to visit the event page, http://www.bloggersunite.org/event/fibromyalgia-chronic-fatigue-syndrome-awareness-day, and to visit the blogs of those who have volunteered to participate.

Thank you so much for taking time out of your busy day, so read at Chronic Connection and I hope you will come back to visit.

If you have any feedback, I invite you to leave a comment or to email me privately at chronicconnection@gmail.com

((((Gentle Hugs))))

Nancy

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2 Responses to Fibromyalgia & CFS Awareness Day ~ May 12, 2010

  1. Anonymous says:

    Wow, Nancy! I so owe you a profound apology! I totally forgot to add a link to the Blogger Unite on my post today. I am so sorry! It just slipped my mind – not that THAT isn’t knew! ha ha
    Anyway, I added a note at the bottom of my post with a link to your blog, and the blogger unite event. I also added a ping back to your blog.
    Great post by the way! I’m glad many of those on line have great husbands. That’s really nice to know!
    Dominique

    • Nancy says:

      That’s okay Dominique…LOL. No need to apologize πŸ˜‰ If you want to submit your post on the even website, it is certainly not too late! That will bring people to your blog πŸ™‚
      Thanks for the link you your post. I appreciate that!
      Take good care, my friend!
      Nancy

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