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 31^st 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,

Finally back to work again

Dear Bloggers,


I am 42 and live in Friesland, and I would love to work, but benefits agency UWV gives me hard time. Yet I am now only a busdriver with a lack of experience. It was difficult but I have paid my own training and exams so I made it myself. Yet I feel that the benefits agency does not enough for me to get me to work. I am applying to everything that is available and possible for me to do. If it comes to jobs it is pretty hard to find a suitable job in the Northern regions as there are not that many available.

I worked for a period of time as a truck driver. In 2005 I all of a sudden suffered from a sudden pain between the ribs when I was loading and unloading. Still I continued working until that one wet summerday, during that day with heavy rain I got a bad pneumonia. Pain in the ribs and the result was that subsequently lifting became impossible and that's difficult when you bring around beer kegs. I ended up in hospital and got into the sickness benefits as part of my left lung had collapsed, after a period of recovery I could sometimes on a good day I was able to drive a concrete mixing truck

I could not even walk normally and also went to the pain clinic in hospital as the pain got worse and worse. After a year and a half it was a lot better with me and I wanted to work again. From my eighteenth I've already been working fulltime jobs. First in the hospitality and later on the truck. I've never sat still one minute and always worked hard. I was getting crazy sitting at home doing nothing. But if I was doing to much again I was punished straight away. The pain pulling through felt like having a cardial problem and that was how the medics reacted the first few times and I was rushed by ambulance to the emergency room.

My body was examined in hospital and the diagnosis of Tietze's syndrome led to another and lighter kind of job search, until suddenly a job as a receptionist onboard of a ferry presented itself through an "old" colleague, who knew me already from my restaurant years. I had worked for this boss before and was already familiar with sailing. So that was not a big deal to get used again to the sailing life.

I could not consume all my happiness in this job as after three years out of nothing my body gave up on me and I got stuck in the sickness benefits again and thus lost my job, getting back was not an option because, according to Danish doctors due to my sickness I was 80 to 100 percent disapproved and the labor market I could not enter due to this diagnoses. To be eligible for a benefit in Netherlands I had to be approved as healthy. In my country they say it is something that you have so just get used to it, the doctors don't even take it as a serious matter. So why was it approved by the World Health Organisation in my country.  And so it happened that I was all of a sudden fully fit again. (on paper)

And that just that my illness is mentioned here only as a condition and it is difficult to be in between two camps (countries) that are having a totally different opinion. In my last reassessment, I became pretty angry about this matter. "But according to you guys there is nothing wrong with me, at least that is what you say so I am fit enough to enter the labour market fully," I yelled at the doctor. And I said that I otherwise would have to work illegal and when I would collapse we would see what will happen. The doctor decided to take the matter into his own hands, and gave me the answer "But you can always get back later into the sickness benefit." If I am feeling well I may fully work?
Hmm.... strange that I am a 100% fit to work and that I can do everything I want. I hope very soon to begin as a bus driver. Twenty hours until thirty hours per week I will bring everyone from point A to point B. Of course I had a medical exam and there is nothing that should obstruct me in my job.

It took several months for the people of the UWV realized that I'm unstopable, they approved me well and hopefully will also my benefit money partly stop. Driving on the bus that's my new challenge in this life and experience is the big stumbling block for the employers. Because yes, I think that working with people is great. "But I'd better be listening to my body now and I already had a wonderful job at sea, but the high stress level in this case was the killer. When I see how relaxed I am now, I am thinking sometimes. ''This should have happened much earlier, when I was still in a good "shape".Although this will be a job on a temporary base, I will be starting a new episode in my life.

The Old Sailor