February 24, 2011

Are you still able to work wit FMS


Dear Bloggers,

For nearly everyone I know with Fibromylagia, it is not the pain, or the fatigue, or even the restless sleep that frustrates them the most, it is the feeling of no longer being productive or able to contribute to a normal society. Also the misunderstanding of the illness by other family members leaves deep emotional scars. How many of us have had to quit our jobs or restructure our lives completely because of this illness? Sorry it is not an illness but a so called syndrome and it is not recogneized by the beneficiary services. It is not a health issue but a mental problem. Most of us I am sure. And for those of you still maintaining your lives and careers, it is through sheer strength and will that you are able to do so.


For myself, Fibromyalgia has forced me into a change. I was working in a passenger ships reception at a high-pressure, fast-paced ferry company when I first was diagnosed in 2009. For months I tried to hang onto the position I had spent several years building within the company, but ultimately I had to let it go. It was not an easy choice to make, but it definitely led to an improvement in my life and allowed me to manage my symptoms without the stress and pressure I faced daily as a receptionist. And yes I loved my stressy job.


I became a bus driver and worked for a temps office, able to set my own schedule, and as long as I met or exceeded my and their goals, I could work as much or as little as I needed. Some weeks I worked full-time, others I put in less than 20 hours. My position required me to drive a lot, but all of my rides were within driving distance so I became a master at routing myself and to take advantage of my "good" days and I had enough breaks to recharge for the next run. The planner knew that he could count on me if he needed someone to fill in.


For several years I was pretty succesful and even thrived in my ships career. At the time it was a very compatible career for me. Then in 2009, as I was sailing to one of my destanies, I was hardly able to get out of my bunk, I waved it away as it was nothing serious and I probably would get the flue. And the comfortable life I had spent the last ten years of building up my carrer was shattered in an instant. Even though I had been living with Fibromyalgia for ten years, I had no idea how relatively manageable my symptoms had been. Sure I had some bad days and debilitating flares, but this was only in the winter season. But nothing like I began experiencing after this bloody morning.



So once again I was faced with a decision. I knew I could no longer manage my sailing territory and my health. I could have pursued the opportunity to go on disability, but I was afraid if I allowed myself to be labeled "disabled" I would start to believe that I no longer had anything to contribute. When I ended up at the UWV office they straight away told me that there are no benefits for this syndrome called FMS. This was puzzling me as the Danish government declared me not able to work a full time job and I was also entitled to a disability pension. It made me angry and confused as I was sitting in between two different opinions. And I made the choice to work as a bus driver but in my own speed. Please do not get me wrong I honor and respect those of you who have and need the security of disability, it was simply my personal decision to eliminate that as one of my choices. So what to do then?


For the first time in my life, I decided to follow my passion for driving. I didn't just wake up one day and decide though. It came about out of the natural progression of me trying to manage and improve my health. Things were pretty dark immediately after my job loss. As the weeks and months past, I continued to feel worse, not better. My despair led me to go and do the driving course and exams needed to become a bus driver and to get my license of course. I started driving for the summer period, and this continued until the 31st of December last year.Unfortunate the contract was finished. 


Thinking about my health and wellbeing, and then a weird thing happened - my life began to come back into focus again. I felt like I had a voice and a purpose again. And then slowly, I started for an other region in the same  company again. Maybe this was not the best choice that I have made. As all other temps I am just another number where no one is happy and among the ones with a steady job sickness is up to more then 10%. I would call it a low social people management close to modern slavery. 

It is by far my least lucrative career, but that doesn't even matter to me. I am healing through my driving, I am reaching out to all of you that there is always something that you still can do, and I am doing something I am passionate about. So do I thank Fibromyalgia for bringing me to this spot in my life. I don't think I will, even though I believe everything happens for a reason, and that I am exactly where I am meant to be, I also think my path was a little too painful for me to be grateful. Maybe I will just be grateful that I made it through.


So this is my story, but I am really curious to learn about all of you. Are you able to work while managing your Fibromyalgia symptoms? Do you simply push through it, or have you made adjustments to allow for the unpredictable nature of Fibromyalgia? Have you had a career change? Are you on disability? And if you are on disability are you still able to earn a supplemental income? Any thoughts you have on working with Fibromyalgia, I would really appreciate if you shared them in the comments. As you might have guessed I am planning to find another place to work again, all in quest for better health and wellbeing. 

The Old Sailor,

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