Showing posts with label fibromyalgia. Show all posts
Showing posts with label fibromyalgia. Show all posts

September 11, 2022

You have Osteoarthritis and now what?

 

Dear Bloggers,

A few years back in the summer I first felt it: some painful morning stiffness in my fingers. The first signs of osteoarthritis. I resemble my father in many ways. We both went gray when we were 25. He developed osteoarthritis in his fingers around the age of 50 and had deformed, painful fingers and hands 20 years later. Other joints also gave pain complaints over the years. I am a bus driver now and would like to keep doing this until my last day. So, no arthritis for me.

You have to learn to live with osteoarthritis, GPs say and 15 years ago I went to the hospital and the Rheumatologist said it must be Fibromyalgia as there is nothing to find in your blood and you are still young. To keep performing in my job at sea. I had to try things out. They gave me a device that gave electric shocks to ease the pain. After a while it didn’t work out. So, I was getting pain medication and through the years I was on the highest possible dose. This summer the pain was getting back to me, and I became ill of it.



I went to my doctor about it. I thought I knew what he'll say: "There's little you can do about it, just learn to live with it." I have heard from many people around me that this is the message they came home with. Or I'm on the doorstep with drugs that won't address the cause. On sites such as the rheumatoid arthritis fund, osteoarthritis is referred to as “this chronic disease” and the treatment consists of drugs such as painkillers and anti-inflammatories, which the doctors have to prescribe for you according to their protocol. To my surprise, I was immediately referred to the Rheumatologist Dr Baudoin in Lelystad. This doctor is not in favor of numbing people with painkillers and other drugs. This is better than just getting a diagnosis in which you are immediately labeled as a "patient" and the "cure" turns out to be an expensive medical treatment that is not yet available. I don't enjoy these kinds of things. First thing I had to do he said was stopping the painkillers and go back to Panadol and solve the hardest moments. My body was totally in distress as it needed to go back to work again. I have been sick of it for three weeks getting fever and diarrhea and as my immune system was totally on the floor. Surprise surprise I ended up with a pneumonia. Isn’t life wonderful.



No one is responsible for my body. That's just me. I have the task of taking care of this as best as possible and that starts with informing myself well. Fortunately, we live in a time when you can keep yourself well informed. I started researching osteoarthritis and what I could do myself to ensure that I can still do my favorite job somewhat decently at 65. Then what I read made me happy and I want to share this with you.

Osteoarthritis is a disease of joints. These can be fingers, but also knees, elbows or hips. It is a form of inflammation that usually ends in wear and tear. It is therefore important to be there early before the wear occurs. This usually only happens after the age of 40, but it is very common. Women are ten times more likely to develop osteoarthritis than men. Wear and tear occurs in the cartilage of the joints, making the cartilage less elastic. The bone outgrowths, together with muscles and tendons, compensate for this reduced function of the cartilage. This is what causes stiffness at first and pain later. Overloading the joint (sports) can also lead to (extra) wear and tear.


Osteoarthritis says something about your overall health

Osteoarthritis seems to be a local condition, but it says something about the health of your entire body. This has to do with that inflammation that it starts with. Osteoarthritis is in fact a signal that the body is deficient in nutrients. The body uses the nutrients present for your essential organs such as your heart and liver. Just like in a panic situation your heart and muscles get blood to take action instead of your stomach which "only" has to take care of digestion. That is equally less important in a panic state. Your joints are “low” on your body's priority list, as are your skin and hair. You can survive just fine with some wear and tear on skin, hair and joints. So they get less nutrients. Osteoarthritis has everything to do with how you feed yourself. Like almost all chronic diseases, by the way. It is therefore important to ensure good nutrition and therefore sufficient nutrients. This is not to say that it is always preventable.



As we age, we become more prone to inflammation. It is therefore important to delay this process as much as possible. Osteoarthritis also has to do with the balance between free radicals and antioxidants in your body, or the oxidation process. This too cannot be prevented, but it can be kept in balance. Eating like our ancestors did before agriculture and livestock were invented is the best thing you can do to fight inflammation like osteoarthritis. In particular, a good balance between omega 6 (vegetable fats) and omega 3 fatty acids (oily fish) is important. Not too much omega 6 but plenty of omega 3 is the advice. Bit of trouble when you are allergic to seafood like me.

Dairy, bread and too many fast carbohydrates can also cause joint problems, so it is important to reduce them. This also applies to red meat.


Soon I am starting together with my wife on a program where they learn us hopefully more to live a happier and healthier lifestyle. I will suffer from pains as I will go to gym again and having a few muscles being not in the best shape. The best is yet to come and the holiday season is on it’s way.

I will try to blog a bit more again although it is painful to my wrists and fingers.


The Old Sailor,

October 31, 2014

Day Dreaming

Dear Bloggers,

A couple of days ago we had a bit of stormy weather and at these moments my brain is running like a ships main engine. Just running a bit faster in a tempo that can be followed. As the wind is howling around the bus and rain is bashing on the windows, I need to wait for a couple of minutes to start the next round again. 


My thoughts are drifting away again. I am memorizing my time and life at sea. A great time with some happy and some sad moments. Yes, I loved it and now I am getting too old with too many complicated extras being a diabetic and suffering from fibromyalgia a life at sea is nearly impossible. Yes, I have some odd fantasies. Wait, that sounds not right, maybe for some really bad. During stormy weather I day-dream a lot. When I day-dream I am getting carried away. Maybe it’s a normal human being thing. I cannot look inside your brain.
 

Whatever, I could day-dream for a whole day, and I have done that before. The good part is anything is possible in a day-dream. When I used to get really angry during my time just after my time at sea. I’d got to my island and cooled down under the palm trees. Yes, I have an island. I also have a ship. But it’s all in my head unfortunately. I turned on the Computer to see “The perfect storm”one of the films I really love to watch. Even though it is not all that realistic.


I day dreamed all the way through it because the film did not catch me this time. The thing I can remember was George Clooney is sailing out with his crew and I was a deck hand. I came around from my day at the day-dream merry go round and thought “what the fuck? This is even more fucked up than my normal day-dream” and went back to whatever else I was thinking about.



Today my fantasies merged with reality and I’ve been searching for small motor ships for sale on the Internet for the last hour. I should be sleeping as it is nearly midnight when I am writing this blog, but never mind. I wish I could buy my family a small motor ship like this.


It has to be the right kind of ship. It has to have the right shape, I found an awesome one with cannons, although I don’t think they are necessary on the Frisian lakes (tempting as it is to track down my wife her ex-boyfriends and enemy’s and fire at them). Burn bastards burn!!!


Problem is, I can’t afford a ship (although there are some smaller ships for sale here in the neighborhood that would cost the same as a car) and I do know how to sail a ship, I do know enough people so they could help me sail the ship, or the people who I do know who could help me to patch up the ship, plus I’d have to sail to get them. So that means no ship, no island with sand and sunshine and I’ll have to stick with driving buses because I currently have no back up plan, unless I suddenly become a famous artist or win a lottery. In which case this is an endless cycle of fantasy but maybe I’d be rich and then I could afford a boat and a new tattoo.



This is all pretty pointless but it’s better than thinking about killing yourself or other negative thoughts, You can call me sick but I am having funny and happy day dreams.


Anyway, a total pointless story, but it indulged my imagination for a bit. Now I’m thinking of my next tattoo…..

The Old Sailor,

June 9, 2011

No money but loads of future left

Dear Bloggers,

Childhood memories are special for everyone. I have a very happy memory of my childhood and always reminisce it with nostalgia. I was born and brought up in a small family which included my mother, father, brother and my two elder sisters. I have very fond memories of playing in our backyard, climbing trees to pluck fruits at the neighbors garden, going to the park and beach and enjoying life in general. Nobody was worried about the near future and as long we had something to eat, we were not complaining.
My dad was a operator at the coffee factory and my mother a housewife. Of all the memories, one particular memory is very important and taught me the importance of saving some money.


A nostalgic tube radio from my childhood years

Furthermore we had to help out with my dad’s hobby which was sometimes hard labour. In the evening hours we had our meal, a shower and watched some television. Some nights I had to go to bed and had a hard time to fall asleep. On my bedroom I had a nostalgic tube radio. The long copper spring wire was working as antenna and was spanned from one side to the other. Out here I listened to the programmes broadcasted by pirates like Mi Amigo, Radio Caroline and Veronica, sometimes I listened to classic stations from Russia or whatever country it was broadcasted from. The soft glow of the radio gave it somekind of mystic feeling.



We were absolutely not the richest people but we had an ok life. Eventhough my school friends went on holiday to far destinations and spend their money on daytrips, we stayed at home and slept in tents in the garden of the ponyfarm of my dad. I never felt it as a punishment as we grew up in a tourist village. And on saturday we were allowed to go out at a certain age of course. During the summer we earned some money for the food of the pony population as in the winter there was not much going on. Maybe other people found that we were pretty poor but it never bothered me. Only thing that has played my mind that we never ever went somewhere during the days that I at least can remember.



One summer, our family car suddenly broke down. Repair was the first option although it would cost a hell load of money to get this fixed.My father did not earn a very high salary and it was very difficult for us to raise that amount of money suddenly. Luckily, my father and mother had a habit of saving small amount of money regularly. This money was not touched but kept aside in case of emergencies. This amount turned out to be the exact amount required for the new second hand car. We were happy that the crisis had turned out right. Slowly we are getting into a financial crisis and we might loose our house as the mortgage puts on a lot of pressure as I only work 24 to 30 hours a week and that is not enough. My life is becoming a bad soap opera. Yes we are having the Blues, listening to myself saying: “We may be poor and there is nothing left to loose, I love you all with a smile and sometimes a small glass with booze”.


My favourite countrysinger Ilse de Lange

I realized for just a moment today that my life seems more like a country song than anything else now that I have Fibromyalgia. You know… lost my wife nearly, lost my car, lost my job and now we are getting closer that we would loose the house!!! Only it would be more like this: (Let me preface with I am NOT a song writer)

“I Lost My Sanity…Maybe it’s in The Refrigerator?“

You don’t have to touch me today, do you? I hope not, cause I might lose it if you try…You see I can’t take the slightest pat on the backside…get any closer and I might have to cry.

It’s the Fi-i-i-i-ibro it makes me fee-ee-ee-eel like such a wreck! I want a tissue for my nose, it bloody hurts everywhere my feet, my fingers and even my neck

You don’t need a home cooked dinner, do you? If so you’re gonna have to cook it for yourself! It’s alright with me if you do, just to get some rest..an hour or two would be worth all the bitchin that you’re gonna do!

It’s the Fi-i-i-i-ibro it makes me fee-ee-ee-eel like such a wreck! I want a tissue for my nose, it bloody hurts everywhere my feet, my fingers and even my neck

You see…today I lost my phone my keys my car my wife and the little bit of sanity that I had left. Bought a microwave meal and picked up a milkshake at the local drive through of Mc D. I got it all wrong but it seemed so right until I realized I was losing in this fight.

It’s the Fi-i-i-i-ibro it makes me fee-ee-ee-eel like such a wreck! I want a tissue for my nose, it bloody hurts everywhere my feet, my fingers and even my neck

I’m gettin to the end of this little country song, about something that will plague me for my whole life long. I just hope they find a cure before I lose again and find my car keys in the door, my phone in the fridge, my wife where she belongs, and my sanity….well I still haven’t found that one yet!!!!




My children learn to spend money but also how to save a little bit so there will be some light at the end of the tunnel. I learn them to enjoy small things like following butterflies in the garden, going a day to the beach with the whole family or a picknic in the park. Riding our push bikes for short trips through the forrest or even a bbq with some friends can make my day and give that holiday feeling.


It is not that bad today sailor

We were helped by the good habit of saving practiced by my parents. Before this incident, I was a spendthrift and use to spend all of my pocket money. This incident changed my way of thinking. I started to save even a little bit from my pocket money. I took to heart the saying, "Little drops of water makes the mighty ocean." Till today, I save money in whatever way I can. I have impressed upon my children the importance of saving money and have got them to do the same.

The Old Sailor,

May 2, 2011

The day that I nearly lost everything.


Dear Bloggers,

So here's the scenario. About a year ago I was diagnosed with Fibromyalgia and I did get the the Talk. The doctor in question gives a lot of these talks, and is determined that we shouldn't miss a single word. We are shown a figure with red dots for the trigger points, and she begins to describe what's happened, in mind-numbing detail. I mention that I'm a guy that learned some Latin and Medical terms had my interrest for a long time, and I knew about Rheumatic problems already quite a few things as I have been strawling through medical books and of course on the internet. We have to listen. To all of it. She is, she tells us, the expert, and no-one for miles around knows as much about Rheuma as she does (My doc at home does probably know nothing at all at least I share that opinion).


I kind of loose my temper a bit as I realize that I am stuck on this bloody sickness for the rest of my days, The doc ignores me and disappears for a short while. We might need her again in the future whispers my wife and I am ashamed of myself. Due to the fact that there will be not much progress in the coming year, I will definately lose my job and have less income. My boss is giving me notice and I can sense that this is difficult for both of us. I had so much fun doing this job but my body decided in a hard way that this was not going o work any longer. I hated myself for quite a while and had to get my feet back on the ground and suite myself with a new style of living. A slower and more balanced life would do myself good. I will compare to someone that is stuck in a body of an eighty years old man who has been working hard all his live but now his worn out body is holding him back due to pain all over. Accepting it is not that easy, the pain is something you learn to live with. My wife told me one day that no one is getting happier when I am complaining, I guess that she was right so I stopped doing that.

The doctor returns, I apologise very nicely (as I have been instructed by my wife), and we proceed. We are told again that we need to come back for some more tests on Monday. We are given some booklets to read ourselves and that was it. Totally devistated we leave the doctors room. All of a sudden some horrific pictures of the worst case scenario run through my brain (a man like me with what looks like a wheelchair and his head is hanging down on his chest; I'm still not sure what that was supposed to be).

In the time being at home, I worked myself back up to certain level and got back to work. I started a job to become a bus driver on a commuters bus for the summer season. If it would not work out with my body and brain, I could simply pull the plug as I am hired through a temps office. In the beginning it was hell as I had to stick a lot of information into my brain which was still foggy due to the amount of medication that I have been using to settle the pain level. I look at it as a drug user that becomes clean, that also takes a couple of weeks before the brain is clear again. 

The money is coming back in although the amount is lower and deducted from my dole money of course. Our holiday? we can simply skip as I am hired for the summer season. Again I feel tears burning as I cannot spend money on my loved ones. That's ok, says she and my kids are fine with it, I still feel like that I am failing somehow. We cannot go on our holiday, maybe next year. Whe sat down one evening when I was still home, we decided to sell this beautiful house and buy something a bit smaller as cleaning and doing the garden became to much for me and for my wife it is too much too handle on her own. Certainly we like to get a reasonable price for it, but still it is not been sold. But what about the housing market after the recession banks do not dare to take any risks anymore. In the mean time we are still living here and although the garden is getting more and more a mess. I mow the lawn and my eldest daughter is helping me with it. The rest of the garden is not in a great condition. Ah, That's ok, because we can sell it for abit less and move on. Hmmm......sounds like my wife gave up on it too. We have seen a nice house on internet with enough space for all of us and with a suitable garden. We would get on a lower mortgage and we could save a few euros to go out for a long weekend. That would be at least long enough for me. 

Well, at least we can sit at home and read... 

The Old Sailor,

March 24, 2011

Fibromyalgia and what it did to me

Dear Bloggers,

I was overthinking the times that Fibromyalgia was just coming into my life and I did have a pretty “normal” life. I was not a superman that did loads of sports I was just an average guy. From the age of 16 I got stiff fingers in the wintertime and I blamed it on the cold weather after a couple of years the stiffness of my fingers became a bit worse. It was not bathering me only working on the keyboard of my computer was hurting after a while. I had a good life and I was just a few years recovered after a nasty fall of the stairs which nearly killed me. After learning a lot of things again with help of my neurologist and a logopedist I could get back to work again. But then the first problems rose due to the costochondritis.



I was fairly active, working out regularly by riding my bicycle and going to the gym. I had just joined a Tae Kwon Do class and I was really enjoying myself. It happened very quickly – my wife was driving, we were heading towards the shop, shooting past the traffic in the other two lanes. Somehow my head could not follow and my hands just swelled up and almost immediately and the pain was atrocious! A trip to the doctor yielded no diagnosis. Still confused we left the doctors office but the pain was not fading. After a fw days I saw the doctor again in a pretty bad condition as also my legs gave up on me and the pain was heavier than before It was februari 2008.

I sometimes wonder if the woman who was the assistant of the rheumatologist ever thinks about the words she so carelessly spoke to me after I finally got out of the chair in the waiting area. "Well, It is hitting you hard as see how you get up and you’re walking like an old man." Does she think about where I might be today? Sure, she was a couple of years younger, and I wander if she was thinking could this happen to me as well in a couple of years. Question is if so did she also end up with chronic pain? Fibromyalgia has many different faces as some of us end up in a wheelchair using loads of medication, others like me have found a way to use step by step less medication and started working parttime in a less stressy job. Eventhough you still have bad days it does not effect your life so much anymore.

My doctor of internal diseases has tried everything. The cortisone shots were the worst. As the pain from my costochondritis was the worst and kept me from working. Six months later, I was still limping along using plenty painkillers and crying myself to sleep almost every night, tried a tense pulsing device which was working quite well in the beginning, still I was taking pain pills every four hours, defying the instructions to take them every eight hours. Finally, my doctor of internal diseases decided that the rheumatologist was the next step. I was 40 years old and preparing for my first long term sick leave, hoping to wipe away the pain and decrease the stress in my body. My job was my life and I could not imagine a life outside of the ship. There was still a lot of pressure on me as accepting this disease is not easy. I was pretty unhappy at the current time.



Getting Better

After three months of intensive and several therapies, I could barely walk for twenty minutes as the fatigue was taking over and I would fall into a deep sleep. I forgot everything even to pick up the kids from school, but the daily pain had been greatly diminished and I COULD walk without any painkillers. I didn't cry myself to sleep at night. A success story, if you asked me. I wasn't willing to settle for a live on the shore as the ship was my life, though. I went to the gym every day and walked on the treadmill – slowly at first and not for very long, but gradually worked my way up to running for five minutes. I felt great.

Still not enough, I was trying hard to get back into shape but during one of my bike rides my body fully gave up on me. Before the event, I had talked to my doctor about getting in motion as much as I could and get to talk to a dietician furthermore I talked to him about my inability to sleep and not feeling refreshed upon waking. He gave me some medication, which didn't seem to work very well. Not being the kind of person to complain about such things, I didn't go back to him about it.

Something Going On

The next weekend I jumped on the bike again together with my daughter but I had trouble to keep up with her and this was new to me. So I tried to catch up and yes I did, and I didn't let the strange fatigue hold me back this time. It had been long enough. I told myself I was just being lazy now. I pushed myself as hard as I could, but now, shin splints forced their way on me, and I would finish one kilometre screaming in pain, only a hot shower on my shins for an hour before the pain subsided. I'd go out again, going a little slower this time. Eventually, I'd give up, feeling like I'd just been to the whipping post. Exhausted and in pain, I'd climb back into the shower, telling myself that tomorrow would be another day.

Eventually, I had to admit to myself that I would not be able to ride a bike for a long journey again, and I set my sights on the half of the journey – eager and ready, mentally, at least. My body still tired easily and my muscles ached terribly after a workout. I pushed because I wasn't going to let the pain stop me.



As soon as I cleared the “finish line”, I squatted down and almost passed out. My muscles were "zinging." I had stopped and couldn't go any further.

An Answer to the Puzzle

The muscle aches and pain started not too long after that. I hadn't made a connection between all of my symptoms, so I hadn't told my doctor about all of them. Lack of refreshing sleep; dizziness, which I attributed low blood pressure; irritable bowel syndrome, something I'd always had; muscle fatigue, flu-like feelings on occasion; poor memory at times; all the symptoms were there. Finally, I read an article about fibromyalgia in a popular health magazine. It immediately clicked – this is what is wrong with me. I went back to my doctor with the article in hand and told him, "I think I have fibromyalgia." I was scared, but relieved when he said, "I think you're right."

He sent me to a rheumatologist, who confirmed the diagnosis in the spring of 2010.

Learning to Live with Fibromyalgia

It's been a long learning experience since my diagnosis. I'm amazed that I can feel perfectly normal one day and completely wasted the next. My wife is just starting to recognize when I feel poorly and what we shouldn't do on those days. Those are the days she generously makes my dinner and doesn't expect me to do more than sit in my chair and read. She used to bully me into saying, I am not complaining when I have pain, not understanding just how bad it was. I love her but hate her for not learning enough about how this affects me to look past how it affects her.

"I've tried all the new anti-inflammatory drugs, to no avail. I've learned that one sleep aid makes me hallucinate while another gives me bad nightmares. Yet another left me so drugged in the morning that it's amazing I was able to get out of bed. After all these trials I was pretty much a drug addict and I made some choices about what would be the best bearable medication. So I started to build things down and act a bit slower with less stress.

The phrase "overdoing it" has taken on a new meaning in my life. Washing the car by myself leaves me exhausted for two days. I can still run when I need to, but I suffer the consequences the rest of the day and into the next day. My days of running and biking trips are on major hold, if not permanently ended. My membership at the gym is frozen, but I've learned that Tai Chi does amazing things. Sometimes I have to convince myself that the pain I'll feel afterward isn't so bad, but it is worth it.



I've learned that my "fibro-fog" is just something I have to accept. If I think about it long enough, the word I'm looking for will come. If I write it down, I don't forget it. My free time is now given to caring for myself, my wife and my two daughters, without their strength and mercy, I would be much worse off.

I know eventually my doctor and I will hit upon the right combination of treatments that will allow me to lead a much more normal life. Until then, I glory in the good days and hunker down on the bad days. I know I'll get through them and only God knows what tomorrow will bring. It's not always good, but it's NEVER always bad. My pain pills are with me wherever I go, but that's not such a bad thing.

I've often wondered when and how I got fibromyalgia. Did the fall of the stairs accident a few years ago cause it? Did it just exacerbate symptoms that were already there? Was it the stress in my job on board? Or was it everything together? I'll never know. I've never slept well, even when I was a lot younger four hours of sleep a day was enough. Personally, I think I always had it and that, for some reason, something made it come to a flare up and it's been with me full force ever since. To me, it doesn't matter. My wife still struggles with that question, though.

I am pretty sure that things could have been worse for example that my brain did not get back to where it was after the fall of the stairs or that fall would have killed me. Or what if .......no, no stop it now. It all turned out pretty well for me.

I am thankfull daily for my wife, for my friends and, believe it or not, for my health. I can walk. I can talk. I can work. I can see. I can feel. I can hear. I can love. What more do I need?

The Old Sailor,

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,

February 14, 2011

Did we all become slaves to the Rat Race?


Dear Bloggers,

You may consider me harsh for making such a statement, but the truth remains: the majority of the world will remain slaves to the "Rat Race" system for the rest of their lives. I speak with a lot of people on a daily basis who say that they are serious about starting their own Home Based business, but they never actually take action to begin the process. As I thought over the subject, trying to figure out "what was wrong with people", it suddenly came to me: We all have been trained to think like slaves!


From the time we were school age children, we were taught to go to work for someone else-in hopes of getting paid for our blood and sweat at the end of the week. We had no control over what the employer "decided" to pay us, nor did we have any say as to what type of hours we would work. We were taught to be "dependant" on others. This type of mentality is no different from the mentality of a slave. Slaves were forced to conduct hard labor for little pay (if any), while the "master" made a fortune, took exotic trips, and sent his children to private schools. For those who may think that I'm going overboard with my analogy, consider this: Who tells you when you can spend time with your family? Who tells you when you are "eligible" for time off? Who dictates to you how long you can take a lunch break?
 Are you starting to get the picture? Most people don't even realize that they are snared by the way they perceive. If a person doesn't believe or know that they have a problem, they won't consider getting treatment for the problem, thus, remaining in their sickening state until they die. Why not start a home based business for yourself? Why not take control of your own income, rather than let someone else tell you what your worth? Doesn't it make sense that you should be the one who decides how much you will be paid? Shouldn't you decide when your going to spend time with your family? If you desire to change the course of your life, you're going to have to change the way that you think. 





Entrepreneurs think different compared to employees. Employees complain that "there are no jobs". Entrepreneurs create jobs by starting businesses.
I am aware that there are some people who will never change the way that they think, no matter how many offers I make to them or how many blogs I write, they will continue to embrace the "employee" mindset. I don't mean any disrespect to those who decide to work for a living: there's nothing wrong with that. 

 

After all, I figured it out the hard way and now I am stuck with this bloody disease called fibromyalgia. 
For me there has never been a reason to give up. I started my life in a different way and became a parttime bus driver next to my job I am trying to start up a webshop but first I need to get some brilliant ideas for entering the market. I need someone to program my computer. I can go on-and-on but I think you get the picture. Which side of the road are you on? Do you want to have a different life or, are you satisfied with your safe secure job and nothing else?

If you're ready change your life and get a "better life",

The Old Sailor,

October 31, 2010

Fibromyalgia is a nasty condition

Dear Bloggers,

This is my second year of being diagnosed with Fibromyalgia and I must say that I have picked up my “new life style” quite well. Eventhough pain is my biggest enemy, I walk up straight and smile to my passengers. I never realized before that deep down in me there has been a load of stress. By controlling my life in a different way and doing my things one step at the time, my pain and all the other symptoms became slowly bearable.

The Horror of Fibro headaches

As Fibromyalgia is now the accepted name for a condition that used to be known as musculoskeletal pain syndrome. The name may be updated but the diagnosis still remains a controversial one as there are still those in the medical community who discount the validity of the condition. And that is a shame as many people like myself who want to carry on are being turned down in so many ways. The controversy arises over the non-specific nature of many of the symptoms as well as the psychological aspects of the syndrome that have been observed. It is hard to find a suitable job if you have to do it on your own. It takes a hell lot of energy that you simply don’t have.

The syndrome is classified as a rheumatic condition, related to arthritis, with the major symptoms being muscle and joint pain over large parts of the body and fatgue. Usually these symptoms are also accompanied by a lowered pain threshold, anxiety and depression. The lowered pain threshold is the major reason why so many remain skeptical over the validity of Fibromyalgia as a specific disease. People with arthritis get help from the authorities and they can get a contract for working a part time job the other half is paid by the government. At least you can be there for your family and function on full power at your job.

The "New Me"

The disease affects roughly ten times more women than it does men but science has yet to determine why that is. One theory is that it is not actually this imbalanced but that men remain undiagnosed or misdiagnosed more often than women do. Perhaps with further research the truth will be found but until then, it appears to affect far more women than men. My thoughts are that men are to affraid to loose their job and their face. If you live in a small community you are quickly called lazy and that f***ing hits you like a hammer.

Generally fibromyalgia sufferers start off with widespread muscle aches and joint pain, usually accompanied by debilitating fatigue. Some people will also experience muscle twitching or burning for no apparent reason. These symptoms often appear at the same time as depression and sleep disturbances.

There are other symptoms associated with fibromyalgia but most victims will have only some of them, making each person seem to have a different problem (another reason for misdiagnosis). A person may experience several of these symptoms at the same time during acute periods while experiencing none during other times. Common complaints include stomach pain, dry mouth or eyes, chronic headache, anxiety, restless legs syndrome, stiff joints, incontinence, sensitivity to hot or cold. Most of these things I recognize as my own in my case I did not experience the restless legs and I very seldom I face anxiety, therefor I do get cramped legs in restperiods and I cannot stand overcrowded places anymore.


Reaching a diagnosis can be a long process as there are no specific tests to determine if you have fibromyalgia. In my case it went quick it only took seven months due to the pressure provided by the Danish government. Normally this process takes a whole year in the Netherlands. It is more a process of eliminating everything that it is not, before determining what it actually is. The doctor will usually do extensive blood tests to rule out many other conditions. Of course, you also must meet the diagnostic criteria which will always include widespread pain that lasts for three months or longer. That means the pain will be on both sides of the body, above and below the waist and will be present in at least one of the chest, neck or back.

There isn’t any specific treatment for fibromyalgia as a condition. Instead, treatment options are all aimed at relieving specific symptoms. Typically a sufferer will be prescribed a medication to reduce or control the pain as well as an antidepressant to deal with the emotional aspects of the disease. I refused to take the antidepressants as I hate all this medication that I get prescribed. My doctor was surprised on my reaction “less synthetic crap is better for the old body.” Behavioral techniques such as stress management are often used in conjunction with the medications as stress has been shown to aggravate the condition and bring on acute episodes.


Some alternative therapies have produced success in some patients but they have not been subject to many verifiable studies. Therapeutic, deep tissue massage has been known to be a help in relieving the pain, at least temporarily. Some also find relief through acupuncture, hypnosis and even chiropractic manipulation. I found my way to get relief by daily Tai Chi practise some basic moves and meditate on free moments to bring the mind at ease. Stress is the enemy. Even I am a huge fan of a love life the pain is always in the way. During foreplay I have to take breaks as my body gives up. And my wife is not the easiest one to please as she loves the full attention during this beautiful hobby.

Whether you choose to go with medication, alternative therapies or a combination of both, there are some things you should do to help your body deal with this sometimes devastating condition. Eat a balanced diet so that your body receives the nutrition needed to support repair and building of muscle tissue, exercise regularly and get enough sleep each day so that you will be in optimal health in order to deal with the affects of this musculoskeletal pain syndrome. Enough sleep is sometimes tricky if you have to start early shifts and your partner calls you lazy when she finds you sleeping on the couch. I feel so useless in many ways as I am not the man that I was a few years ago. Nothing was to much for me and I was never ever tired. Nowadays I wake up tired and on my free moments I feel more dead than alive.

The Old Sailor,

May 16, 2010

Counting down to a big change...........or will this be amrageddon for me.

Dear Bloggers,


I wanted Bruce Willis to play the starring role in a movie about my life. I wanted to write a book about my job the way Paolo Coelho does. I wanted to speak to large groups of eager educators and make them laugh with my nutty remarks. These were all goals of mine when I was not suffering from anything, and was full of energy and ideas before I started sailing. I wanted to find happiness through success and this would only happen if you worked hard and did your very best. At least that was what I thought when I started years back making something out of my miserable life, when I did my days in the army I had to find a job to make some money. I was motivated and focused to make a difference and become something in live. I started off as a dishwasher in a local hotel and worked myself up as a bartender and waiter in the hotel restaurant. After a few years I became headwaiter.


Unfortunately there was only work in the summertime and during the winters I did many different tempsjobs. I worked in factories, became an iceskate essembler, was taxidriver and freelanced in the weekends as a bartender in one of the bigger towns. After a few years I had finished my education as
bartender/waiter and dreamt about earning good money and start my own bar elsewhere. First of all I went to Australia with a friend and worked for a wholesaler in Sydney. We made enough money to support ourselves and had a good time. But when the recession broke out we lost our jobs and had to turn back after a few months that was the first setback in my life, but soon I carried on.


And that spring I found a new challenge I wanted to become a sailor with a great salary. My past from the army gave some hindrances and I had to try again, and I ended up on a cruiseship. The life onboard was not very glamorous and the sun and Jim Beam became my best friends. When I came back home I applied for a job as a bartender on a ferry again. This was luxury compared to the liner as I had my own cabin. I hoped that I could climb up the carreerladder and be headbartender at least. Those where all soapbubbles about to burst as in the higher ranks there was no place for me and I saw a lot of good and bad "bosses" in my sailing days. The months between contracts and ships I filled with doing temp jobs and later on I worked as a freight driver. I drove the big cemetmixing trucks and delivered beers and soda for the Heineken company. Until I could not lift heavy anymore due to costochondritis and I needed to do an office job. I started to work as a receptionist on board again.


Everything was going exactly as I had hoped for and planned. I got a job onboard a ferry to the United Kingdom and everything in life was picking up again and we bought a new house to have more space. I never felt at home in this house so we did put up the for sale sign again and will move back to where we came from. The housing market is very slow and we did not have any serious buyers, but we have time as we do not need to sell. If we sell it, it is another part of my life that can be closed. There were good moments and bad moments for us and believe me there were more bad than good ones. It relieved me when my wife agreed with me that I could not really be happy here and that we both missed the lake, why did we move here anyway? My wife and I wanted to live closer to her parents so they could easier help out babysitting. We hardly ever had any benefit out of it and our kids went to a nanny two blocks away.


I did a good job as there were not many complaints on my behalf, paperwork was not my hobby and will never be. And I really enjoyed what I was doing although there were deadlines to catch. And those deadlines were giving me at least a lot of stress situations as I was mr. plentyfix and I could turn a bad situation into a reasonable one. Until the load was getting to heavy as I could not say NO. When slowly my body started to give up on me. It started with pain in my hands and fingers.The rest of my body quickly followed and by the next month, I was changed into an old man as I was completely turned into a rheumatic person. I was diagnosed with FMS is a rare neurological condition that involves neurotransmitters giving the wrong signals and telling the system of muscles and the nerves throughout the body that I should feel pain. It is rarely damaging, but recovery can be very slow and often patients are left with residual effects. There is also the possibility of relapse when you have a lot of stress.



After being diagnosed with fibromyalgia by the rheumatologist from the local hospital, I was in good health, but body and mind were still ravaged from the syndrome. I was unable to stand or walk for a longer period of time and had very poor use of my hands. I spent the next three months in a local health center where I received three intense therapy sessions a week. By the end of the summer. I was fully discharged from the care of doctors and specialists and had no residual effects. I felt nearly like the same person I was the day before this all started. At least, I thought I was the same person. Until a moisty day came along and I was hit by muscle pains from hell.


Life is like a pop quiz. You can’t plan for it and you only get one chance to do your best. My breakthrough came one day in rehab when I was asking for help to get through everything. I stopped asking when I realized that I had to beat this on my own. I needed to listen to people who couldn’t help
themselves and reach them a helping hand. I knew that I was strong enough to fight this battle with my body and I felt left alone. I learned life doesn’t follow your planner or your schedule. I had to learn to walk instead of running all the time. Life has only one purpose…to happen. If you only focus on all the things that can go wrong and being afraid that your body will give up, you will simply miss the beauty in the things that happen around you and also the small successes that you book yourself. I changed a lot during the course of those months, but more than anything, my belief in the power of the human spirit changed the most. People are capable of extraordinary things. We all have the power to take our current situations in life and make them better. The road to change is littered with obstacles, but they are not permanent hindrances, only temporary roadblocks.


I returned to recently to the job market and applied for lighter jobs the last few months and quickly I realized things were different. From a sailor with no energyloss, I had become a relaxed housedaddy that does not care about stressed situations anymore. A new episode in my book of life had started by ripping out the balck pages. I felt like I was watching someone else and I soon realized that it was the new me. That man in the faded green shirt wasn’t the man who started of this year as a slightly handicapped person. I no longer wanted to change the world. I didn’t want any awards or taps on my shoulder, telling me that I did a good job. I wanted to be happy and I couldn’t be that as a sailor do to the long working days, I needed to start off in something completely new. This summer, I will say goodbye to my career as a sailor and take a job as a busdriver on the citybus with a limited amount of working hours. While taking a drop in pay and, in some peoples eyes, taking a step backwards in my career, I found I had taken a huge step forward. I was doing something again, working with people something I cared deeply about.


I will start working again on Monday and I am really looking forward to it, as it has been a tough year with a lot of ups and downs. And people in offices that do not understand at all why you want to go back to work so badly. They do not see the financial trouble that you have as you need to fight the governments to get some benefits that you are entitled to. Also sitting at home is not my hobby and I am defenitly a lousy housekeeper. The disadvantage that you have as your curriculum vitae tells that you are a person full with adventure as you did so many different jobs. And the lack of experience will give you a lot of rejected applications and therefor very stressfull.


In addition to a change in my career, I had a change in my priorities. I decided to put my wife and family first and everything else as a distant second. I focused on being a "good" husband and having a happy marriage. I rediscovered my passion for my wife and also for recreative cycling, something I had started to lose during my last years of sailing. I took advantage of every good weather day and made sure that I would get a fair set of kilometres on the clock and biked like it was my last day on Earth. Of course the next day I was hoping it was the last day on Earth as usual I was a complete wreck due to the pain as I had overdone it again. I was totally out of balance and I could not except that the old me was not coming back. A psychologist told me that there was no need for finding the old me as he was dead and buried.


Together with my doctor, fysiotherapist, ergotherapist and a dietician I have put my life on the tracks again. And my train is not the fastest but at least it is rolling again. Only when we go uphill we need a bit of help, all the other parts I do without any help. The big difference with the old train is that this one has a break and there is no doubt that it will be used. The new me looks quite similair to the old me but inside there have been big changes.


Hopefully the new me will be a success and I do not need to get higher up. I have the ambition to do a job as good as it gets. I still hope one day there’s a movie made about me. I still hope Bruce Willis will be in the starring role. I still want to write a book. I still want to speak to large groups. These are all goals of mine. I am still motivated and focused. But I have to take care about my energy levels and make sure that my body can handle it. I now hope to find success through happiness. I want to be me…and I’m fine enough with that. Maybe I should change my hair, my house, my clothes, my future, my soul and my name.

How would that sound "The Old Busdriver?"

The Old Sailor,

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