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,