Staying active with FMS

Dear Bloggers,


Staying active when living with fibromyalgia is a necessary challenge. If you rest, you rust, like the old saying goes. And I think that's true when it comes to fibromyalgia. Something is off-the hook in our central nervous system, and that produces exagerrated responses to things that would otherwise not be painful to a person without fibromyalgia. Sometimes, there's nothing to respond to, the pain is just there and nobody knows how it was caused. Sitting still is the logical response, intelluctually speaking. If I just don't exercise, maybe I won't cause any pain and I'll feel better. But the exact opposite is true. If you do not stay active, you will be in even worse pain. Believe me, I have done both, and it's far better to stay active than it is to become immobilized. This following section is devoted to a once-active man with fibromyalgia who wanted to get back to his active live. Who is still active but may be having trouble modifying his lifestyle to accommodate fibromyalgia's impact.

Each fibromate has to learn his own energy “accounting system”. This will take a few weeks or months or even years for you to establish, but once it’s established it is possible to keep the balance stabilized, and even to make a deposit once in a while. I’m deliberately trying to explain it the easy way. But it’s very simple really, to understand it. Think of it as a cash drawer, or a jar of coins.

You have 24 hours, but less than 24 cents or Euros. Eight hours are devoted to sleep, so that leaves 16 waking hours, but less than 16 Euros/cents. Assuming you’re working full-time, that’s another eight hours, which will use up more than eight currency chips. Why will working eight hours use up more than eight chips? Because, with fibromyalgia any mental or physical exertion, and any work-related stress, uses energy faster than that expended by a person without fibromyalgia. And you still have to take a shower, get ready for work, take care of the kids, fit in some exercise, eat right, work on a hobby, grocery shop, clean, cook…

No longer can you “do it all” like you once could. Those days are gone. Give them a bittersweet goodbye, it’s time to style a new life. Grab hold of your new chapter, this is a positive change. Fibromyalgia is not a death sentence, it can be one of the most positive things that ever happened to you. It’s just possible that you are “doing too much”, and fibromyalgia has forced you to slow down. That’s what happened to me, and it’s one of the best things that’s ever happened in my life. So, please, don’t let it get you down. Learn to live with it, work with it and grab life with both hands and enjoy everything you can do. This is what life is about: Even it looks like a dead end street, but if you look right you will find the small alley in it for a new way into life. I truly believe fibromyalgia was a just certain sign to stop me from running all the time. Before I had fibromyalgia, I was running around, never tired, overmotivated, and hyperinspired. I was given the gift of an invisible illness that was incredibly hard to diagnose. So that I could share my experience with others and find out more and more about myself.

So, what needs an active man to do? Why because rest rusts, I need to stay active, of course! Everything in moderation, though. And I need to keep track of those pennies. It makes cents.

Just Say "No"
With just saying no, although it is not easy in the beginning you will keep better track of your energy.
The danger always is there and when you have a "good" day, you have to take extra care.
I’ve always admired a friend of mine who isn’t afraid to say no, and isn’t afraid to insist on what she wants. I would think to myself, “I want to be her.” We all need to learn to be true to ourselves and not be afraid of what people may think if we excuse ourselves as we know what we want and need. Most of us fibromyalgics are not that easy to live with. As we are not want to ask for help eventhough we need it. Smiling as we do not accept yet another “assignment” from a neighbor, friend, co-worker, relative who is laying the lazy speech on us. No, actually, it’s not fair, because I have a chronic, invisible illness. I’m sick every day of my life, every minute of every day. It’s just that the assigner of the project can’t see that, or maybe even doesn’t know.

Maybe it is better for me to learn what my friend does. Take an invisible, deep breath, sit or stand nice and tall, adjust your posture, make direct eye contact, and just say "No."

The Old Sailor,

In love

Dear Bloggers,

So far I am spared trom the swine flu. Some time ago I was infected with a virus and I stil suffer from it, it was appearing with light headed feelings including a ticklish belly (read: butterflies) and constant daydreaming. There are a number of adverse reactions: spontaneous gaiety, a hollow heart beaten, concentration problems and daydreaming.

Indeed, I am talking about the infamous love.

Love is just like any other virus almost always unexpected and unwanted. For example, if you're just recovering from a broken heart. Or when a long relationship a little on the daily grind begins to appear.
There is nothing we can do. It is best to accept that you are infected.

Love comes in different forms. The most devastating form characterized by a strange tickling sensation in the abdomen and an inexplicable attraction. The most extreme form is characterized by drooling, obsessive behavior and froth. Caution! If you start to tremble with excitement when you think of that person. This last form is really very dangerous. If you recognize this? Please contact as soon as possible your doctor.

Between these extreme variations are listed a variety of forms. Fortunately, the most violent form, but rare.
Infatuation can also start at the first stage and subsequently develop. I find myself already at an advanced stage.
And that it is nothing new but it already is happening for more than 16 years
If the love is mutual, this can result in true love. (This stage I have reached now.) If the love is only coming from yourself it can lead to a broken heart. (And now it will be difficult.) I have the impression that it is not always two-way and why? Has she no longer fear to lose me?

Love can be contagious! If the person is looked deep in the eye and sparks of fire would jump over, it might happen sometimes that sparks shoot back to you!
There is currently no known cure for love.

So especially enjoy your love. Laugh of the Mexican flu victims from being the whole day in bed with fever and cough, while you climb cheerfully out of bed and want to sing all day!
In short: At the first symptoms hump the object of your affection! A direct admit to in this case is the best medicine. I will do that as well. Also there has been done some scientific research.

The best way for women to have less stress is ... being happily married. Happily married couples as domestic work and care for the children are devided and will take the pressure off on womensshoulders. And less stress equals a better night's sleep.
The key is to stress hormone cortisol, released during a stressful period. morning cortisol level is high, and the level is going down slowly but surely during the day.

Women who can come home in a loving environment after work,can easier come to rest after work. Add to that a balanced distribution of responsibilities at home and it is clear that much stress is away. The key word is rather "good relationship" than married.
For women in bad relationships has not. After a busy day, they still have to start the household tasks and then there will be stress. Late at night they are still busy and when they go to bed, they are still worried. The result is that the stressed woman will ly awake and will suffer from sleep. Final conclusion is, therefore, help each other.

Tips
Take good care of your relationship. Make arrangements with your partner in connection with the household chores, the children ...
Talk to your partner enough about your relationship. If there is something on your mind, it is better to talk about rather than to gather up everything.

The Old Sailor,

Saint Nic is back in the country

Dear Bloggers,

The steamship was again recently reported in the Dutch waters.
And it would not be long before Saint Nicholas will again set foot in our little country.
This morning at 06:30 my youngest daughter was waking me up.
Asking if she could go downstairs to have breakfast.

I mumbled: “Yeah, yeah that's fine.” All of a sudden I realize that she is up so early because Saint Nicholas is arriving today.
She is of course afraid that she will mis it.
When I am coming downstairs the television is on and she is sitting in front of it.
I explain to her that we have plenty of time to eat breakfast as the live broadcast will start at noon.
She looks at me like I am a lunatic, but today I am saved by the morning news programme.
One of their subjects is as you can guess the arrival of Saint Nicholas in the Netherlands today.

It is not much that she is eating this morning, there are so many things going on in her head.
Finally the clock is telling the right time and the rest of the family got out of bed as well.
When the show starts they start with singing on of the typical Saint Nicholas songs and of course everyone is singing along, but it is not that loud yet.
Fully excited she is coming to me and says: Luckely the storm has not given too many problems, dad.
Earlier this week the television had a special report on the steamboat that they were in a very bad storm. (even some of the presents went overboard.)

As the hosts are suggesting to sing another song my kids are singing full power, the tension has made way for happines.
There is nothing nicer then seeing these little happy faces.
It is still a side to a lovely and very old tradition which fortunately has not lost to the ever-popular Santa Claus in other countries.
Yet as the Saint cannot run away no longer from the commercial part, but it's not as crazy as what they do in England or the United States for example.
In most shops there, you are bombarded with Christmas offers and a lot of you don't really need stuff.
There are even free bustrips organized for the older people to get them to the shops as they are a great target.
In itself there is nothing wrong with the fact of free transport for pensioners, but specially those people are very susceptible to the so-called bargains.

I come with some regularity in a mall.
And when I compare the goods with the prices elsewhere, I inwardly need to laugh.
As the bargains are not really bargains.
I think it is a nice time anyway, the dark evenings when you go shopping gifts have a certain mistical atmosphere.

Even that they are a bit afraid of the fact that they are coming at night to fill their shoe with a small gift or some chocolate.
Many parents have to lie to their kids again.

I played once the role of the holy man, and the funny thing is once all make up and accessories have been placed, the role of Saint Nicholas is born.
What I also found a very nice experience that is both large and small in his own way, the magic of this man is there again a great experience.
Cars that you come across full of adults, flashing its lights, and drive past you all happily waving to you.
This is pure encouragement to play this very special role in a hot suit with an awkward mustache and beard.
I think that he has still many years to visit our country and the tradition will be kept alive.
Allthough our little country is becoming more multicultural it is still a marvelous feast.



I hope that everyone will have a nice "Sinterklaasfeest" or Christmas, what ever it will be in your case make sure that the gifts are coming from the heart and not because of material matters.

The Old Sailor,

Kerstman VS. Sinterklaas vechten

Who is the good guy?
Saint Nicholas or Santa Claus

Sunday and having the blues

Dear Bloggers,

It's Sunday morning and the rest of the world is in a deep rest.

When I open the curtains it is foggy outside. if you can see 50 meter it is a lot.

I slander into the kitchen and spread a few pieces of bread and enjoy my simple breakfast.

The feeling comes over me, I slowly slip away into isolation.

I am feeling less and less at home in this village and this house.

The feeling of lonelyness crawls over me again.

I turn on the radio and pop music today can not tempt me, I change to a station with classical music.

I enjoy the serenity as nobody is around and I turn on the heating.

Yet I get the cold not out of my system.

I realize that I do not that much lately and I am not as positive as in previous years.

I desperately wander lazily and in deep thought through the house.
I decide to turn on the washingmachine to get the last bits of this weeks laundry.
I just think of the past and I'm sitting down in the pantry to watch the spinning machine.

Gently I dream away and I'm back in my youth, my childhood home.
I sit in front of the washing machine and the smell of fresh brewed coffee tickles my nose.
I wonder where my mind was wandering to in those days.
Did I dream of endless beautiful things? Or what if my thoughts were darker then?
I do not dare to tell you, and retrieval of this time is not possible, unfortunately.
I will not say that my childhood was great, but it was not bad as well.
I was lucky that I grew up in a warm nest.

O.k. my mother was usually at home and when you came home there was always tea or coffee.
Now all that became different.
I'm the only one here who drinks coffee in this house and in most cases, I make it myself.
I've tried everything but I prefer to drink ordinary filter.
The family home was sold and my father lives in a seniors home, my mother has lived here aswell for a while. Unfortunately, she was already called to meet by our Lord.
Suddenly I realize that life can be extremely erratic. Suddenly, things happen in your life that are irreversible. Thus every part of your life has a good and a bad side.
As you grow older there are more so called “bad” things on your path.
More often there will be people around you that disappear and you will lose them to Grim Reaper. Furthermore, your body and your mind and you are declining slowly.

Enjoying life has become different.

Previously I really enjoyed the bigger things like a holiday flight or a new volvo, now I enjoy the birds that feast on the fat globules in the birdhouse or the ducks in the pond nearby.

I note to myself that I'm satisfied quicker.

While I used to complete or fight myself to death for a better result, it is indifference or do I admit that my body is no longer capable to do this. Did the accepting of the new me start or am I starting to accept that I am aging?

I doubt the latter, though I must admit that I am not eighteen anymore, In my wanderings on the web I found the spoon theory and this shows marvelously how I feel, and what I can do, but that I should organize my time differently.

The lupus symptons are pretty similair to the fibromyalgia symptoms if it comes to pain, anxiety and being tired all the time.

The spoon theory

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

© 2003 by Christine Miserandino Butyoudontlooksick.com


It's nice that I can still write my thoughts and thus a part of my frustration is expressed.
It is not always easy to have an invisible illness and to make it visible to people who deliberately do not want to understand you. Do not be afraid to live, because sometimes it will be hurt.

The Old Sailor,