Back to work

Dear Bloggers,

I developed fibromyalgia in januari 2007 when I was a 40-year-old receptionist working under extreme pressure and deadlines for a busy ferry company.

I averaged about 6-7 hours of sleep a night due to job stress, coupled with a life-long tendency toward insomnia.

I had also been under a great deal of personal stress for many years.

I would try to catch up my rest by sleeping 7-8 hours a night on the days that I was free, but the family life would not let me.

After a few years of this, I suddenly developed a pain in my lower back and especially shooting pains in my arms, hands and fingers.

My muscles felt tight and inflamed, and I was physically exhausted.

I wanted to work less in the near future and change to another job, but I had to keep on working to pay the bills.
I had no idea what was wrong with me.

I consulted many doctors--neurologists, orthomolecure therapists, fysiotherapists, chiropractors, rheumatologists, doctors of internal medicine, etc. Each one had a different theory: fibrositis, arthroses, sarcodiosis, pinched nerves, lyme disease, and even a hypothyroid condition.

The final diagnosis was fibromyalgia.

I had tenderness at 13 of the 18 trigger points characteristic of fibromyalgia, and stiffness and pain in my muscles.

At times I also had muscle tremors and herendously tired.

I felt totally burned out.

The doctors prescribed drugs, anti-inflammatories, muscle relaxants and painkillers but nothing really helped.

It was very frustrating!

I tried taking vitamins by changing my diet and exercising.

The vitamins helped me feel stronger, but the debilitating pain and stiffness of fibromyalgia still persisted.

Exercise actually made the condition worse sometimes but I was told to keep in motion--it felt like my muscles were tearing.

Even mild stretching, such as reaching too far into a cupboard, would cause me days of misery.

I was puzzled that I even had pain when my body was completely at rest!
Since it was unlike any other pain I had ever experienced, I found it hard to describe to others. Sometimes it was a sharp stabbing sensation, at other times a dull, miserable ache that wore me down.

It felt like the nerves and muscles were irritated and inflamed.

Because I looked healthy and kept up with my responsibilities, a lot of people didn't believe that I was suffering like I was.

Some even said it was "all in my head" or that I was lazy and trying to avoid work!

Needless to say, this increased my emotional stress levels!

Unfortunately, not much was known about fibromyalgia in my surroundings but internet could answer a lot of questions but some parts that you read will make you more sick.
I started losing the feeling of "connection" between my brain and my hands.

I would think I was going to drop something, when actually I would be gripping it very tightly. Also, if any weight was put on my arms, such as carrying grocery bags, lifting a heavy pot from the stove, having a child pull on my arm, etc., I would get terrible pains in my arms that would last for the whole day.

I felt practically disabled!

So many activities I never gave a second thought to now became obstacles throughout the day!

As a "Type-A, take-charge, high-achieving" kind of person, these drastic changes in my life were hard to accept.

It was a nightmarish time financially as well.

I tried physical therapy, cortisone shots, massage therapy and chiropractic to relieve my fibromyalgia.

Of all the remedies I tried, massage helped the most, but it was very expensive and the relief I obtained ended almost as soon as the massage did! My muscles were drawn up and tight, especially in my upper back and neck.

Massage therapists told me that my muscles felt "hard." My whole body was painful and stiff. If I sat for more than 10 or 15 minutes, I could barely get up again because of the pain and stiffness in my knees and legs. I felt like a very old person. I learned to sleep on my back because of chronic pain in both shoulders.

After a couple of months at home on sick leave and many visits to the hospital, It is time to go back to work now.

But question is can I handle it and can they get used to the new me.

The same person dealing in a different way with his energy levels.

The fibromyalgia will flare up or ease off depending on how much sleep I was getting or how much stress I will be under.

I feel pain and tired much of the time and also suffer from insomnia, but I am not the person that sits down and feels depressed.

I actually became more and more aware of what my body is still capable to do.

I had a lot of trouble with insomnia.

Usually one bad night's sleep led to 4 or 5 more nights of even worse sleep!

I tried a lot of remedies, and a chinese method learned me how to relax eventhough I did hardly sleep, the body came to a full rest.

And I had enough energy the next day.
The physical pain of fibromyalgia is bad enough, but the fatigue wore me down mentally as well. For months I was so physically weak that even a normal car trip would completely exhaust me and I would fall asleep on the couch!

Also, the pain sensations were very severe at these times, but I was not willing to give up and let this sickness influence my mind.

Al my back up sources were depleted from years of sleeping problems.

And that was where my body simply started to hit the brakes.
In order to cope, I learned to reduce all forms of stress in my life and to curtail any activities that would make the fibromyalgia worse.

I came to accept the fact that I could no longer participate in many of the activities that I would normally do but that I had to regulate my sources.

I had previously enjoyed, and I eventually adapted to a limited lifestyle.

The carefree days of good health seemed over for good, and I had given up any hope of a "cure" for my fibromyalgia.

I don’t believe there is a cure for it, but if you believe in yourself you can learn how to deal positive with the pain.

The Old Sailor,

End of the summer holiday

Dear Bloggers,

If central Netherlands will also go back to school, the Northern part already started again for at least two weeks.

They are learning reading: With the words Me, moon, rose.

And they learn to multiply and add.

Two weeks is often the case?

A period that children, especially infants get a small decline in fatigue and mood.

The first few weeks and they are getting up happy, when they are clean and brushed waiting at the door when you call them once to go to school, then suddenly there is more and more that they take it slow and they start crying at the farewell.

I often heard the question lately how you can support your child when they go back to school. Obviously, every child and family is different, here are some collected opinions:

Specifically: Tell what you know: the teachers name, This is your class, this is your seat and in the circle. Here we hang your coat on, and look here is the bathroom. If the clock tells..., I come and pick you up.(babysitter, caretaker at school) at the entrance. Avoid big and exciting stories what they do and learn. That comes later.

Specifically 2, after school: Keep your questions short and limited, how was it? It is difficult for a young elementary school child to respond. Easier when you have something concrete to ask like: I see paint on your pants, have you been making something? Or: Fridays you've always have gymnastics and which teacher is going with you? Do you like it (or is it stupid!) what you do with gym? What games do you on the playground? Was that the story of a frog or a horse this morning the teacher was telling? What was that frog doing? The first time it is very difficult for any child to tell what is happening and what he or she experiences. Give them some space, do not expect too much. Suddenly your daughter says:? you know what I find really dumb? and you have beautiful leads to a good conversation.

Caring:(even with an anxious heart) Larger children suddenly doing more cool things as driving around on bikes. That, after the summer they are suddenly being a huge step further. Show me how you do that?,is the question. You say: I walk behind you and if I think you cross the street next time you can do it on your own?.

Caring 2: Keep it cool at home. Playing with others is fine, but set straight away some limits. Two afternoons per week is really enough. Especially for toddlers. And get them to bed on time!
To get them back into the daily rythm will be the hardest part, and also for myself this will be tricky.

The Old Sailor,

A recycled holiday ???

Dear Bloggers,

Yes, it was that time of the year again, time to break out of the daily atmosphere and go on holiday.
Although I have to admit that this time it would be different then former years.
Normally I was the one pulling the wagon and being active all the time.

These days are history and I was not looking forward to go on holiday as I am being tired quite a lot.

But I was pretty surprised that my kids simply did their things and we only had to guide them a little bit. That is also one of the big plusses of having everything inclusive so they can get everything themselves. As the staff is used to Dutch speaking guests the kids can simply manage themselves.

I am very happy man as I really got the chance to relax, my kids hung out with the entertainers and during the day we had all the time of the world in the park, as we had a few days to explore it. So for me there was only the stress of travelling to the park, but the navigation system guided us clearly to our destination.















We checked in and the relaxing could begin, in the restaurant you got your own table for the whole period. And that was absolutely fabulous as my kids knew exactly where to go.

To me it was a great experience, I really came to rest although I had to fight the fatigue attacks in the afternoon, but I could get coffee everywhere and this helped for the time being.

In a way it is one of the most bizarre amusement parks on the planet and it is called Wunderland Kalkar (formerly: "Kernwasser Wunderland") in Kalkar, Germany. http://www.wunderlandkalkar.eu
















It started its life as a breeder-reactor! Shortly before its completion it became one of the most expensive ruins (approx. € 4 billion) when numerous protests, the Chernobyl disaster and political queeries made it difficult to justify its existence.

The Dutch businessman Hennie van der Most had plans for it: He bought the whole ruin (minus the nuclear stuff) for just € 2.5 Million and converted it into a hotel and fun-park.























His early plans of building a rollercoaster-dark-ride through the spooky, labyrinthine hallways of the reactor came to a halt when he was confronted with the totally insane building-requirements in Germany.






















Poor Hennie was close to call it a day, when he famously gave an interview in which he nagged about the German bureaucrazy.

Apparantly placing some flower-pots on a 3 meter (10 ft.) thick concrete-slab required permission from various building-authorities!
Of course their have to be some safety requirements but this was a bit to much of sticking to the rules. At least that is what I think.






















Of course Hennie was also aware that the ambience of his artificial paradise left something to be desired.
Despite being beautifully located at the edge of the Rhine-River, the massive cryptic architecture of the plant overshadowed virtually any idea of family-fun.
So there had to be something done about it.
The cooling tower was turned into a climbing wall and was nicely painted.
Also the other buildings got some fresh and happy colours.

With all-inclusive offerings (all-inclusive means: food and dirnks and especially alcoholic becverages) he somehow managed to fill his bunker-hotel with groups of low-level business travellers and groups of youngsters to have a party.

The good part of this idea is that nobody has to drive home as you stay in the hotel. (No trouble about who needs to drive.) There are some strict rules about noise and that is no problem as the hotel accomodation is seperated in most of the cases from the bar street which is in the basement of the reactor building. And more and more families staying for a few nights.

In the hotel area there are a couple of restaurants in case you want to eat something different then the buffet food, you have to pay a little bit extra for the wok or piri piri restaurant.

We had our virgin experience with the hotel and I must say that we all loved it.
Me as a receptionist myself found of course a few little things that could be done better.
Of course I made a few remarks on the comment card, but these were a couple of minor notes. Our two daughters have already decided to go again next year as this was just not long enough for all of us.

The children's entertainers did a great job and had a good programme running. To please my spouce we have been shopping in Oberhausen mall called CentrO which is only 40 minutes by car from the park. I really have to compliment all the staff as they where all very friendly and helpful.

Eventhough people where queing in front of the receptiondesk, they really took there time for you and explained things how it should be.

The park is now in its 14th year of operation, catering to families who can´t or will not afford a day at one of the upscale German and Dutch amusement-parks in the area. (where you have to que at least for a minimum of 20 minutes on every ride.) We tried one of them on our last day.

















Moviepark Germany is approx 1 hour drive from Kalkar. I had booked the tickets online with a discount offer of 30% but still I had to pay more then € 80,-
The park was in my opinion absolutely overcrowded and only the atractions for the little ones were available within 10 minutes as they were running as short as possible.
For the main attractions like the rollercoasters at ten o'clock in the morning the queing time was already 50 minutes or more.
Furthermore several attractions where not open or under repair, strange thing to do that in the high season.

Looking at new pictures of Wunderland, it seems that they somehow manage to blend out the buildings by simply throwing lots of paint on them.
Besides, after a place has been used for a different purpose long enough, the "old ghosts" seem to vanish.
Still, the idea of putting an amusement-park into an atomic powerplant is awesome, even if the outcome is a bit underwhelming.

At this moment Henny van der Most bought himself a “new” powerplant in Meppen (just across the Dutch border between Groningen and Assen.) http://www.funpark-meppen.de




























This so called funpark Meppen will be opening this year partly but will be more based on extreme action sports.
The concept will be similair to Wunderland (All inclusive) but this one is for the bigger kids and their moms and dads of course.


The Old Sailor,

Open Letter about Fibromyalgia

Dear Bloggers,

As I became active on a Dutch forum about FM, I found this letter and had the feeling that I should share this with you. Just to get you a better picture of what I feel. Do not worry I have translated the letter from Dutch to English so do not hang me up on small spellingmistakes.

And as we all know that life is brutal, but still there is no reason to let your head hang down.

This how I look at real friends: a friend is someone who dances with you in the sunlight and walks beside you in the shadow as that is all what live is about.

Open letter to people who do not have Fibromyalgia:

If you have Fibromyalgia, it means many things change and that many of these things are invisible.

It is not visible as a paraplegic.

Most people do not understand even a small bit of what it is to have FM and living with the effects it has on your life.

People who think that they understand what you have are normally poorly informed.

To be informed, and who can understand? .......

There are certain things from me I want you to understand before you condemn me ...

Please understand that being sick does not mean that I am no man or woman anymore.

Most of the day I spend in a lot of pain and exhaustion, and if you visit often, I am not very pleasant company, but I am still in this body.

I am still winding myself up about work and my family and friends, and usually I love that you also talk about the things that are concerning you.

Please understand the difference between "happy" and "healthy".

If you have flu you probably feel miserable, but I have been sick for many years.

I can not always feel miserable, in fact I work hard, not to be miserable.

So when you talk to me and I sound happy, it means that I'm happy.

That is all.

It does not mean that I have no pain or being terribly tired, or that I am getting better, or whatever.

Please do not say: "Oh, you already sound better!".

I do not sound better, I sound cheerful.

If you want to say something about it, you can.

Understand well that being able to stand for 10 minutes does not mean that I can also stand for 20 minutes, or an hour.

And since I could stand 30 minutes yesterday does not mean that I can do the same today.

With many diseases you are either paralyzed, or you can move.

This disease is more complicated.

Everything described above also applies to "sit", "walk", "believe", "thinking of others" and so on ...

It applies to everything.

That is what Fibromyalgia does.

Please understand that Fibromyalgia is variable.

It is possible (for me that is normal) that one day I can walk large pieces and back while I have trouble the other day just to reach the kitchen.

Do not attack me with: "But yesterday you did!" if you want me to do something, ask if I can.

In a similar situation, maybe at the last moment I will cancel an appointment, if that happens do not to take it personally.

Please understand me that “going out and doing things” not make me feel better and I often feel a lot worse.

If you tell me that I should move a lot or that I should lose weight (or even gain), or I should buy a training device, even to go to gym or something like that ... then I will do that.

I am emotionally hurt (and I need to cry sometimes) and that is not good ... all these things I would do if I could, I would like to do and you know it?

I work for myself with my doctor and physiotherapist, and I do all the exercises I should do in my situation.

Another decision that I really acts is: "You have only yourself but harder to tackle ..."

It is clear that I work for myself with my doctor and physiotherapist, and I do all the exercises I should do in my situation.

Another judgement that I really hate is: "You have to be a bit harder on yourself..."

It is clear that Fibromyalgia has to deal directly with the muscles and because my muscles are not developping the same way as yours , I distroy more than I do good when I follow your advice and it will cost me days or weeks to return where I was and to recover from even a single activity.

Please understand that if I say I need to have a seat.

Too lie down or need pillows, and that I need it now - it can not be postponed because there is no time for it, or that I am not at home. (or for any other reason).

Fibromyalgia does not care about that.

If you have a good idea for me, than keep it for yourself.

It is not something that I do not appreciate, and it is not because I do not want to be better.

It is all because everyone has a good idea for me.

In the beginning I did everything that I was advised and gave it a try, but I realized I was consuming so much energy to try things that I made myself only more ill, and not better.

If there would be anything that all Fibromyalgia patients could help or could cure them, then all persons with Fibromyalgia would have known.

There is a global network (Internet and others) between people with Fibromyalgia, if there would be something that might cure us, we would know.

If you have read everything and you want to give me a good suggestion, please do so, but do not expect me that I immediately go after it and give it a try straight away.

I will then consider it and discuss with my doctor. In many different ways I depend you - people who are not sick - I need you to visit me when I'm sick or when I can not go out myself... Sometimes I need your help when I need to do some shopping, cooking or housekeeping.

I'll probably might even need your help to drive me to the doctor or physiotherapist I need you also in a different way ..... you are my link to the outside world ... if you will not visit me then I'll maybe not see you that often. ... and, as much as possible, I need it that you will try to understand me.

The Old Sailor,

Perpetuum Jazzile - Africa (live, HQ)

A good friend of mine cheers me up on rainy days and he was sending me this video. Amazing how they do it, a good example that the credit crunch is there. They probably did not have any money for instruments. I would say sit back and relax, close your eyes and enjoy this masterpiece.

The Old Sailor,

Kylie Minogue - I Should Be So Lucky

I should be so lucky part 1

I should be so lucky part 2

Dear Bloggers,

OPINION: The road to hell may well be paved with good intentions, but nobody told me that you would have to listen to a chorus of whingers along the way.

I was listening to the Radio the other day and they were discussing how we were sliding of slowly towards some sort of hell and there was no way we would ever look back on these present times as the "good ol' days" like they had back in the fifties and sixties.

What a load of ….....
We all know about the 'glass half full or glass half empty' metaphor and I hesitate to suggest that the current level is starting to be unreflective of the unimaginable bounties that we currently possess.

In other words, our glasses are almost full and too many of us are nagging about the bit that we are missing at the top.
I started writing my blog today as I wanted to expound on some of the more positive things that are going on.

Well, today I wanted to write about how incredibly fantastic it is to be alive in this modern age. 'What are you on?' I hear you say.

No, nobody laced my breakfast with ecstasy this morning.

I sometimes think the opposite is going on.

Maybe the whole population is being drugged to suppress their excitement and enthusiasm at their good fortune to be living in these wild times.
I was tripping around my house this morning belting out the chorus of Kylie Minogue's 'I should be so lucky' and my five-year-old was telling me to stop singing. It looks like they have got her too. Kylie is good example aswell if it comes to being positive, she is really a strong woman as she was struck by the horrible disease called cancer. Never let your head hang down, but fight.

It is all very well for me to keep on telling about how great it is to be here, but I must qualify my assertions.

I have always believed if you want to understand your place in the universe you must look at the wide view.
Fundamentally, each of us is just one of nearly seven billion bipedal apes shuffling around on a big spherical rock trying to procure a few basic needs- namely food, shelter, and, if you're lucky, a bit of reproduction.

It looks as though we have achieved these basic requirements rather well and by all accounts most of us are in bloom.
Judging by the number of overly corpulent persons crawling down the streets of the western world, many of us are not flowering at all.

It is a rather telling paradox of our times that our problem is not that we don't have enough to eat; it is that we can't stop shovelling tasty morsels into our gaping mouths.

At no time in the history of civilisation has there been societies where the general population has been so affluent that they have been able to consume all the meat, sugar and carbohydrates to their labouring hearts' content.

Yet we still complain.

Our car is not new enough, taxes are too complex, society is too crime ridden.

Reality check: You have a car. Your taxes bring are wide range of services that have become essential to your life. You probably haven't been a victim of a serious crime recently, and if you have been, just remember you are still here to fight another day. (there are two things we are sure of in this life: death and taxes.)

Let's go back a couple of thousand years and you can be sure that things wouldn't nearly have been so rosy.

Some of your brothers or sisters would have surely died in childhood.

Disease would have been a constant threat.

Running water and functioning sewerage would have been but a distant dream.

And murder a not uncommon practice.

Do you think they sat around the fireplace bitching about issues like whether or not we should put folic acid in our bread?
We are much more unlikely to die a violent death these days than at any time in history. Something in modernity and its cultural institutions has made us nobler.

In fact, our ancestors were far more violent than we are today.

Indeed, violence has been in decline over long stretches of history, and today we are probably living in the most peaceful moment of our species' time on earth.

I like the idea of Thanksgiving eventhough there will be thousands of turkey's killed for it.

I don't know exactly who or what we are supposed to thank, maybe God, maybe some exotic religion, maybe your mother, but I think it would be good to spend a day every year reflecting on the fact that our glasses are almost full to overflowing and the little things that send us into apoplectic fits of self-pity and disgust are really just a small beer.

You don't need to wait until this special day of reflection though.

You can do it right now.

Look around you, examine the detail, think of where you have come from and where you are going and if you really get it, if you really, truly understand the situation in which you currently exist, it should blow your freakin' mind.

If you can't climb out of your own reality so easily, but there's a place somewhere in your surrounding that might do the trick.

Surrounded by some pieces of our beautiful nature and if you don't have any kind of happy feelings as you consider your place in the universe you really have been drugged into submission by some dark forces determined to keep you from being happy.

I'm the first to admit that I'm not always the paragon of cheeriness and positivity, but the concept that we are all extremely fortunate to be here is never far from my thoughts.

It is great to be here and I hope you can see that too.

You all enjoy the rest of the summer while I take off to the next door neighbors beautiful country and relax for a few days.

The Old Sailor,

How to live positive with Fibromyalgia

Dear Bloggers,

Or how to look on the bright side when you are in pain everyday...

While we can never remove them completely, We CAN break the chains of Fibromyalgia!
Dealing with constant daily pain is... well, to state the obvious... a real Pain!
When you are in pain, the whole world becomes dark and dreary, this is a dismal place to live.
You hurt to even put your clothes on in the morning...It is hard to enjoy life when even a loving hug is painful!
Fibromyalgia is a painful condition.

Everyone experiences pain, so those of us who are stuck with it, or another chronic pain condition, all to often, get very little support from our family's, who may feel that we are being over sensitive or simply love creating drama.

I explain Fibromyalgia like this.

Take 5 clothes pins (you know the old fashioned wooden kind with the metal spring)...Place one clothes pin on each finger...for a little while it is tolerable...But keep them on longer and they become painful...Keep them on your fingers longer still and they become unbearable and the wearer wants to take them off...Then Tell them that they can not!
After a couple more hours of them having to continue wearing those clothes pins, then explain that this is the kind of pain you experience on a daily basis... day in day out, 24/7.The difference is that, they CAN take the clothes pins off and we can NOT!

I saw this somewhere on one of the Fibromyalgia web sites but honestly can not remember which site has it. To them I apologise.

Most people don't understand that even though we may not look sick, we really are.

Life becomes an endless blur of pain.It hurts to sit, it hurts to stand, we may walk with an unsteady gait, we bump into door frames, stumble and fall frequently...
So here are some tips I found useful to help me to cope with the daily pain and disability I deal with every day from Fibromyalgia.
It affects more than just the sufferer...It affects the entire family!
This is probably the hardest thing to do...Accept that you did not cause this, AND it is not just in your head!
Sit down with your family and discuss your Fibromyalgia or your other Chronic Pain condition with them.

Don't leave anything out...Be honest and frank in your discussion.
Try not to take it to heart if they do not understand or seem unsympathetic, some familymembers are just like that.
For me the Fibromyalgia hit like a train running over me at full speed...I have trouble getting up after it hit, my body feels like being beaten up, all I wanted to do was sleep for a while....If this sounds like you, these are the things you need to make your family aware of.Hopefully they will understand.If they do not understand, it will make things more difficult on you, but not impossible.

Understand you can't do it all....Be honest with yourself!
Take on projects in small bites, take your time so that you do not exhaust yourself and cause increased pain.
Fibromyalgia is a day to day kind of disease...today you may feel alive and full of energy and tomorrow you may barely be able to get out of bed!
Try to surround yourself with positive peoplePositive people will increase your energy, because they are supportive and will be more understanding.
Negative people bring you down, are not supportive and can actually cause you injury or increase your symptoms simply from the added stress or you pushing yourself to meet their expectations!

Joining a gym, fitness can keep you mobile...Join a gym? Yeah, I know it sounds crazy but, with Fibromyalgia or other chronic conditions you will feel like want to avoid exercise but, exercise is necessary to prevent or slow down the loss of function that occurs with these conditions.You hurt, so you do less, and you hurt some more...you exercise, you hurt, but you do not loose as much muscle tone...There is a fine balance though, that you need to be aware of, many doctors do not realize this or forget to tell their patients....
While at the gym you need to realize that most of the machines in there are geared for "normal people"whatever normal means...That said, some machines we will be physically impossible for us to use without causing injury to ourselves.

Take care of yourself... do not attempt to work out on machines that are difficult or cause you pain!
Listen to your body, place your mind in a peaceful state.

I mean, really listen to your body, you know you will be in severe pain by evening with your normal stuff anyway, so do stretching exercises.

Heat works by increasing circulation to the area which in turn helps to flush toxins out of the muscles. I love to take hot showers in the morning too get started.

This increased circulation will also increase inflammation so keep this in mind.

Heat is also known to soothe aching muscles.

Get a hobby like gardening, collecting coins, puzzles, anything you really enjoy a hobby can keep you mentally stimulated and help you at least temporarily forget about the pain.

A hobby will keep you busy, you can work on it when you feel up to it.It can give you a sense of accomplishment and putzing around with it keeps you active and mentally alert.

For me bicycling is soul healing... just riding out there looking at the wildlife and landscape is peaceful.

Take time out for yourself.

Do what you enjoy but remember your limitations, you can push them but, as you well know you will pay for it tomorrow.
Some things are worth the pain and fatigue!
Everyone needs to take a little time to pursue what makes them feel calm and at peace.

Life is wonderful, you can still get out and enjoy the world around you with chronic pain, just take things slow and easy

Do something to give yourself a reason to get out of bed every morning
Accept that you do have limitations, and ask for help if needed. (although this is pretty hard in the beginning)

Depression is common when dealing with Fibromyalgia and other chronic pain conditions.

The depression is a result of the pain not the cause of it.

You are not mentally ill as some doctors still believe... If they tell you it is in your head or you need a psychiatrist... get a second opinion and FIND A DIFFERENT DOCTOR!
Be proactive in treating your condition.

You know your body, tell your doctor how you feel, where you are currently experiencing weakness or pain so that the two of you can make educated choices on how to treat your particular symptoms.
Despite the pain, you MUST exercise to keep what function you have.

The Old Sailor,

Holiday Fun?

Dear Bloggers,

Our country is hardly moving, or at least not so fast anymore.

We live these days in a whirl.

On the edge of pulling through the last bits or they are at least dreaming away about what will happen.

However, many also are concerned about what will happen.

Will I be fired after the holiday or am I another victim of the Mexican flu?

According to experts, the recession and the flu will show themselves from their worst side soon. It can be seen in their faces.

Some are looking pale, despite the fact it is already high summer for weeks.

Others are brown tainted and sitting relaxed behind their desks.

Just work for a while, and then we really are going on a holiday.

However, the open-mindedness is something that is far gone this year because now the exciting places may be hazardous this time.

And then the idea that the holidays might be the last ones Mom or Dad gets unemployed.

This in relation with the stranglemorgage they can not cough up moneywise.

In the street you start to find empty places.

You got already quickly used to caravans and motorhomes that decorate the street.

With a certain probability I think that a few of them need to sell their so called “hobbyhome”.

I am also happy that I am not that hooked on going on holidays.

I find it just as much fun on the Costa Backyard as the Costa del Sol.

As myself many parents of young children pressing their last energy out to begin the holiday with as much fun as possible.

I therefore put the pool up and place it in the backyard, the children still had not much interest although the temperature was rising to thirty degrees celcius.

Unfortunately, the kids don't want to do anything fun because they are just tired.

The last bits and pieces were the hardest ones.

Here at home the atmosphere is excited as they understand that we no longer have to get up early.

But if you're awake then you will find Dad downstairs.

I am almost every morning up around six o'clock already, because my body is being painful crying for a hot shower and medication to mute the pain.

After a few days they are used to the new rythm and get out of bed as I have already a half a day behind me.

It is pretty tiring for our kids, waking up every morning at seven o'clock because they have to get ready for school.

But if it is holidaytime, it is tricky in the beginning to sleep in, and it happens the first few days that we shared our breakfast at seven, despite the fact that we all are having summerbreak, but many times after breakfast my oldest daughter goes back to bed.

And I cannot say that this is wrong.

It is only the beginning of July their holidays have just begun.

We only go on a trip at the end of their summer holidays.

It all boils down to a week or five with nothing to do.

(According to my two lovely daughters we find this boring.)

If we sit at the breakfast table, and I prepare for this holiday time, I am bringing up my topic: “Adventure” is the magic word.

Where do you want to go this holiday?

There is a long silence at the breakfast table.

However, my oldest comes up with a few ideas and I write them on paper.

We make a list of adventures park it to the cooker hood.

My youngest doesn't care at all no matter where we go as long as we go by bus.

(she is five and that is her greatest passion.)

Indignation, is widespread when my wife announced that we have no money for these kind of things.

The recession became also active in our savings account.

We will probably not be able to do all adventures but at least a part of them.

We just want to have occasionally the holiday feeling, after the hard work at school where the days were long.

We are happy with a museum and an amusement park this would be enough for us.

It is true, they had to work hard this year because our school was not that good.

The inspection has been very satisfied with the results.

I fear that after the holidays, when school starts again, it will cost the same amount of weeks to return to the harness of getting up on time and yes soon enough it is again November 11 and we are also getting closer to the arrival of Sinterklaas.

Then new strenuous times are there.

There is something unfair in it, they have so much to learn, and I occasionally learn a bit about all the new techniques.

But they are still at the beginning of life and will have at least 45 to 50 years of working for a future to build, I am now somewhere halfway.

I am going to think quietly about it and take a walk through the neighborhood.

It is a confusing time.

Neighbors in shorts are busy packing the camper.

Mothers with children riding hasty and crates full of groceries into the street. (own potatoes rule)

At home my children enjoy their holiday in the garden leave and I walk on quietly thinking.over everything.

Slowly I realize that during my childhood we did not go on holiday because there was simply no money for it.

However, I do not blame my parents because they made great trips with us to the IJselmeer.(the big lake in the middle of the Netherlands.)

We had bread and coffee to go and we bought an ice cream.

This was according to my experience the ultimate holiday.

The Old Sailor,

They call me fibromyalgia

Dear Bloggers,

Let me introduce you to my new companion in life.
I found this on the Dutch fibromyalgia site and translate it, as it comes quite close to my feelings.

Now they gave it a name and now the fight against it finally begins.

Hello,

I am an invisible disease.

I am now with you for the rest of your life.

Others around you to see me, but your body feels me.

I can attack you when and how I want.

Also I can take care of you by giving severe pain attacks.

And if I'm in a good mood I can even ensure that you have pain.

Remember that you did a lot with your energy and had a lot of fun?

Well, I took that energy away from you and gave you fatigue instead.

You now also trying to have fun, but I get you out of your sleep and give you a headache in return!

You know what I can do more?

I can ensure that you vibrate inside and you are cold or hot when everyone feels normal.

I can also make you anxious and depressed.

You did not ask for me but I have chosen you.

Why?

Perhaps by a trauma (car- crash/whiplash, surgery....?) That you had.

Or by a virus that you caught somewhere.

Anyway, I am here now and I will stay!

I hear you went to a doctor, to get rid of me.

Hahaha, I rolling over the floor and laugh!

Keep on trying!

You will be going to many doctors if you finally can get rid of me.

Also you will probably be packed with pills: sleeping pills, vitamins, painkillers, energy pills?

You will get massages and sometimes they will tell you that you are anxious and depressed. They will tell you that if you take pills on time, and do your exercises well, I will go away.

But the worst is that sometimes you will not be taken serious, when you are yelling at the doctor that you do'nt have a normal life anymore.

Your family, friends and colleagues will all listen to you until they are sick and tired of knowing how I let you suffer and that I am a disease from hell.

Some will say: "You just have a bad day" or "Yes, you can not do anything more that you could ten years ago."

They are not you then say: "Ten years ago? Ten days ago!"

Also, some will talk behind your back while you slowly get the feeling that you are losing your self-respect.
Still you try, while you know, to explain them so they would understand.

This can be especially difficult if you have one “normal” person where you are talking to, because sometimes you'll suddenly forget what you wanted to say.... The only people who really understand you and support you are, the people in whose body I am also present.

And unfortunately, you will also discover that your true friends you can count on 1 hand.

But the ones who are there are those, which are there for you REALLY!

The Old Sailor,

Older painkiller, naproxen, found to be safest

Dear Bloggers,

Shocking news this morning a legend, the king of pop, Michael Jackson went to fiddler's green. Sometimes I am worried that my painkillers could trigger a heart attack or dangerous stomach bleeding as today it was mentioned in the news that Wacko Jacko died of a cardiac arrest. And that the painkillers he is using might have caused his death, it made me think that maybe the next victim is me. So I started reading reports again and to my surprise I read that diclofenac is pretty dangerous.

New reports on painkiller risks, based on reviews of dozens of studies including hundreds of thousands of patients, indicate most patients should try naproxen, an older anti-inflammatory drug.

Experts say it doesn't raise heart attack or stroke risk -- a major worry for older people -- and naproxen is inexpensive because generic versions have been around for years. Available over the counter, it's taken by millions of people worldwide.
The drawback is that like most painkillers, it can irritate the stomach, so doctors say some people may also need to take one of the newer acid reflux drugs.

"I do think we should start with naproxen in the vast majority of cases," said Dr. Steven Nissen, head of cardiology at the Cleveland Clinic and president of the American College of Cardiology. "It's about balancing the cardiovascular and gastrointestinal risk."
Along with the good news about naproxen, the two studies raise new concerns about a few painkillers, particularly diclofenac, which has been on the market since 1988. The commonly used anti-inflammatory drug, also sold as Voltaren and Cataflam, carries as high a risk of heart attack or stroke as Vioxx.

The new analyses also provide even more evidence of the dangers to the heart and kidneys posed by Vioxx, which was pulled from the market two years ago.
The latest findings should help patients and doctors confused about painkiller safety since news began unfolding about the risks of Vioxx, Bextra and other non-steroidal anti-inflammatory drugs.

Using any of those drugs, liver and kidney function tests should be required every six months.
The heart risks from diclofenac were reported by researchers at the University of Newcastle in Australia. That report recommends regulators review whether diclofenac should stay on the market.

THE RANKINGS
According to a report in the Journal of the American Medical Association, the painkiller naproxen has less of a cardiovascular risk than other drugs. Here are the rankings of risk estimates, from lowest risk estimate to highest risk estimate:
1. Naproxen
2. Celebrex
3. Ibuprofen
4. Other anti-inflammatory drugs
5. Mobic
6. Vioxx
7. Voltaren

I think it is about time that I should discuss this with my doctor, at my death there will not be such a media hype. But at least seven persons will miss me.

The Old Sailor,

Fathersday

Dear Bloggers,

Father's Day has become a day in which to honour our dad's for all that they have done for us through the years of our lives. Being a man and living with fibromyalgia can make it more difficult for us to do all the fathering that society expects of us. Father's Day can become a day of great stress for us as we try to please our own parents.

Our children do try to honour us, and even the smallest gesture of their love can help to make this day special for us. However, we may need to make our families understand what they can do for us on this day in order to make it a less stressful and exhausting day.

Breakfast in bed is nice, but if the rest of the day is spent trying to meet their needs, then it isn't enough for us. Families tend to think that what we want is to be together with them on Father's Day because our social values have taught us that that is what is expected to happen. But what those of us with fibromyalgia may really need for Father's Day is a day just to ourselves.

A day of walking along the beach, in the woods, or just sitting outside and enjoying the springtime with its beautiful colors and flowering plants without any demands being placed upon us.

Preparing our families and explaining what would be really helpful or special for us on this day set aside for fathers is something that we can do. It may be that we awaken on Father's Day in a major flare of our fibromyalgia and the last thing we want to do is get out of bed, get dressed, and be taken out to anywhere.

Those of us with small children may find it extremely difficult to get through this special day because of their many needs which must be attended to whether we feel up to it or not. If we have a supportive spouse or mother who truly understands our fibromyalgia, it can be made easier for us. However, many of us don't have the support of our families, or our extended family is far away, and can't be there even if they do understand what we go through on a daily basis.
I did not have fibromyalgia when my own children were very young, yet I now struggle with their lack of understanding of what I actually go through each day of my life. They will do special things for me on Father's Day, but if I can communicate my needs to them for this special day before it arrives, then maybe it will become a day that I will enjoy and remember as being a day especially for me.

Placing myself first has never been easy for me, but this year I plan to do just that. I don't know what I will want from them, but I do know that just being accepted as I am, and being understood no matter how I feel on Father's Day is the most important gift that they could give me. If I choose to spend the day in solitude and reflection of myself, then I hope that this will be granted to me
Flowers, gifts, and food prepared by someone else may be all that some of us need in order to feel that we are being honoured. Others of us may need to be pampered or shown by actions that we are loved unconditionally.

Being a father is a great responsibility, and for those of us with fibromyalgia, it may be one that drains us on a daily basis. We need to learn to take care of ourselves first, and sometimes this creates guilt because our society says that being a father means to give to others first. Yet, if we can't care for ourselves, then how can we find the energy and resourses to care for others without losing an important part of ourselves?

I believe that honouring and taking care of ourselves first is the most important gift that we can give to ourselves on this special day set aside for fathers everywhere.

The Old Sailor,

It is time to party

Dear Bloggers,


It's finally the annual time of the year, time for the so called Liphuster Feest. On thursday it's decorating day, a day on which we decorate the houses and gardens for the coming days.
But today it is Friday and we kick off today with the kids from elementry school which is based in the village. They all walk from school to the tent and getting fries and ice cream as a treat. Every year the committee comes with a theme and this year it is fairytales. And of course at the beginning of the evening we have the parade. During the day we had some rainshowers but the sky cleared and the sun came out. Through the years the floats became bigger and more beautiful, which is giving some trouble to get everyone in start position. But after a bit of puzzling it is time to get rolling. Just after a 100 metres the parade comes to a hold as the bolts from one of the wheels of one the floats came loose. Luckely no accidents happened but this was close call. One of the neighbors is mechanic and he was able to fix it during the evening as the float stranded in our street, but they had to drop out of the parade for today.




























Children Love Parades
Children love parades for a number of reasons, one of which being that they are strange and wonderful things. Big city folks don't understand small town parades. They have expensive floats decorated entirely with flowers and grown up men are having toys that they're obviously too old for, but it's a little different at a small town parade.At a small town parade, you start off with the local police department, riding in cars to make sure that everything is safe trafficwise. The floats are being build by the local mums and dads and also the clothing is sometimes made by a few handy women. I think it is nice that this is still excisting as in these modern times it is not that common anymore to do things together.

Marching Bands
Marching bands, are probably the most professional entries in the parade. As they practise a lot and are showing up in all these parades, although of course one is better then the other.
Less charitable things can be said for the baton corps. These are little girls, most of them, who can barely manipulate a baton. More or less twirl one. The older ones will toss the baton in the air and actually catch it, but please don't think that I'm critical of the kids.
Building a float
Starts with spreading ideas at the neigborhood meeting, from that point a lay out is made and the building of the float begins. It is for a lot of us pretty hard to be a teamplayer as we all want to be captain. So there is a lot of discussion among the buildinggroup and the developpers. For me it is pretty hard to keep myself on the brakes, but I have to take it easy on my body otherwise I will be struck by it the next 24 hours. I am not always agreeing with the design but it is nice to see what they are coming up with, this years theme is fairytales and our float is called “ice queen.”
Most of the streets have units. , with actual floats built atop hay wagons, usually pulled or ushed by tractors. The building of them happens in barns of farmers in the neigborhood or under a construction of pipes and shielded of with a few hammer-cloths. As a mum or dad you have to help building the float and they make a shedule for that, but also the youngest kids are going on the wagon from the school. So you got a double job.

Dads don't get to be Dads any more. As before every single dad had a job but now in this time of recession a lot off them are laid off or it is getting closer to them. On some of them you can sense it as there drive to do something is not there and their conversation is a bit depressed. If he gets laid off and doesn't have money to pay the full amount of bills coming in every month, and with these days that you have to play cheerful and go with your kids to the fair eventhough you can not afford it. It's not much fun being a unemployed dad, nor do I imagine it's much fun for their kids.

I Love A Parade
I said earlier that little kids love parades, because they are strange and wonderful things, and older people have their own reasons for loving parades. I can't say that I find them overly thrilling, myself. I always liked to see fathers beaming to see their kids in the parade, and kids beaming to see their parents see them. No wonder parades have dropped off, as people have forgotten the warm feelings of their kids and the happiness on their little faces. Some of us are being to busy with themselves but this is a start of coming back together or....


The Old Sailor,

Fear of falling with the bike.

Dear Bloggers,



















I have found a new remedy to keep myself in motion, the fun in it overrules the pain.
And it is great to see that your own daughter is fighting the stabillity issue.
Somedays I have to take it easy as the pain has the lead, but as soon as I can we go for a ride.
She understands perfectly that daddy can not get of his bike so quick and that she has to listen careful to what I tell her to do. If we enter a crossing I learned her to stop and get of the bike.
One of the biggest problems for my daughter is to concentrate as she is sometimes more occupied with talking to me where she should actually focus on her biking.










As you can sense, my daughter of 5 would love to learn how to ride a bicycle, she bikes, but is very afraid to fall. She is now cycling with supportwheels, but to stop and particularly the getting 'on and away' cycles are difficult because she is afraid to fall sho she is getting cramped and worried. However, she is very persisting to learn it and she loves to go biking with me. It is as if her confidence is lacking in her physical capabilities, what she physically can, purely in terms of cycling, stabillity is still her enemy. She notes if she has that under control, it is good. What remedy (s) can I give to support her so that she can learn to trust in herself because fear is a bad adviser.



Possunt, quia posse videntur
(They can do it, as they are convinced that they can do it.)


The Old Sailor,

Am I losing it?

Dear Bloggers,

The question is: am I losing it?

As all these doctors keep on telling me that I am overweight, something that they have been telling me for years now and nobody is taking action.
So I went to a dieticien to find out what I should do differently eatingwise.
When it is sunny I don't have many problems although people selling ice cream are very nice people, and with two young kids it is hard to get past them.




I am doing my best but sometimes I have to give in, most of the time I am strong enough to say no.
On rainy days I am facing the hard times, but when I feel for a snack I go for fruit now.
But of course all the bad things are still there as my kids still get candy, crisps, cookies and so on.(they don't have to suffer.)


People around me are telling me that I am getting a bit slimmer and I promissed the dietician to leave the weighingscale for what it is.
Checking all the time does not make you happier she said but can actually make you very frustrated.
Listen to your heart and the people around you that should be enough.
So from that point of view I have to think that losing 40 kilos is not going to be that easy.















Today is one of those days, feeling down, feeling blue, nothing clicks for me. It’s raining, it’s pouring, my life seems so boring.
Nothing is really wrong, just this overwhelming feeling of nothingness and unacceptable hunger attacks.
Let’s see if I can find 10 things in my life that are not nothing but everything.















1. I have a roof over my head, our house is dry inside, warm inside and houses me and my family really well.
2. My daughter is walking around sniffing her nose, last signs of the cold she had this weekend. She smiles at me and gives a kiss.
3. The laptop is working very well, it gives all support in writing the blog and never complains of me hitting his keys.
4. People look at my blogs, read articles and leave comments. Blogging is connecting most of all, leaving comments is connecting.
5. Finding my voice in writing is becoming easier. Every time I type the word ‘think” I begin feeling again. This way my posts are from the heart rather than the head. My head can be emptied by listening to the heart.
6. I had a good sleep last night and already had two delicious cappucino’s! Mind you, some days coffee makes my day.
7. Vision, I can still see with both my eyes even though the vision in my life is not always that clear. [Can you see how I am going to be negative again, what a habit.]
8. In Midspringtime my garden is already flowering. Midspring is cold, rainy and not the time for the flowers to come out. Midsummer is still a long way to go at least that is what it looks like at the moment.
9. I just found this quote: ‘If I know what love is, it is because of you.’ by Hermann Hesse.
10. I get inspiration by reading about how to connect with other people through the net and end up on total different pages again.




There was a really good chance of rain today but it didn't rain.
It amazes me how rainy days affect my mood.
I was all prepared for the onslaught of a torrential rain and it didn't happen.
The Weather Man says its coming tonight and tomorrow, and I will try again to prepare myself for the sleepy, drowsy, weepy mood rain puts me in.
I don't know why rain affects me that way but it does, another thing I need to learn to deal with.
I may never learn to love the rain, as many times rain means pain but I will learn to live with it.
And I will learn to dance in the rain eventhough I am not that rhytmic.
I have so many bad eating habits that affect me like the rain,when I allow these habits to creep into my life they overwhelm me.

Sometimes I am afraid of losing the battle but I keep fighting myself like Don Quichotte fought the windmills.
I am going to strive to overcome these habits.

This quote sits on my computer where I can see it every day, how often I forget these words.
" Life isn't about waiting for the storm to pass....It's about learning to dance in the rain"















Let us wait for the sun to come out even it is only for five minutes, enjoy living in a different way as the good old days are lying behind us.
I walk towards the sunset and know that I will never make it to the end of the horizon.

The Old Sailor,