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,

The preconceived opinion of the society

Dear Bloggers,

Slowly the autumn begins to enter and when I bring the children to school in the morning the leaves swirl around me. The first trees begin to bare all. I stroll on the pavement on speed dead easy (because of morning stiffness) trough this picturesque image and I am drifting away deep in thought. Until my youngest daughter suddenly pulls my arm and points her finger towards a toadstool. She also asked whether gnomes lived in there?
 

Suddenly I'm back in the real world and I tell her: “Well I think not, because I see no door or a chimney.” Meaningful is her gaze, her eyes he look at me intently. I give her the explanation that not in every toadstool lives a gnome. Meanwhile my brains are running at full strength. I have called the images in my head that this toadstool might be for sale and has a tiny sign in the garden. I laugh about myself and we continue our trip towards the school.

 
It drizzles outside and inside it is comfortable and warm and you would really like to stay here. (And while I hated school in my younger years.) But yes, staying is not an option. One of the students gives a swing to the copper bell indicating that the lessons start in about five minutes,. (So parents have to bugger off.) When I walk out of the door, I feel in my back a few eyes stinging and I think I can guess what these ladies will have as their next issue. “ Yes, the middle-aged unemployed seaman.” Yet I am not the one to be fooled, I greet them with a friendly look and walk quietly back towards our home.
 

I walk back turned into myself and start to giggle a bit and I think are there goblins without work? You normally see these little males usually armed with garden tools. It is not that they are the most active figures as I've never seen one of them move. Some goblins are fishing but this picture gives me even more to think. In my experience this is a sport for men who do not have sex. Because why else would you get up so early in the weekend to get out of a warm bed. And then sitting under a big umbrella staring at the extension of your genitals.
 

Yet it is easier to understand with goblins because you did not see many goblin females. Suddenly I realize something, this would be something not right? Are women oppressed in this culture? Tomorrow it will be in the headlines of newspaper de Telegraaf : “Dwarf men not affraid to use domestic violence.” Meanwhile, I arrived back home and I open the door, I make some coffee and listen to the radio. I make some telephoneconversations to ensure that at the end of the month again we will receive some money again.
When I pick up the kids from school it is around noon, I have decided to buy a winter coat for the little ladies. It is sunny autumn weather when we go on the bike towards the shops out there. Once arrived in the store with my princesses unfolds the grand celebration of the winter coats fitting.
 

We have a lot of fun and nothing is disturbing us. I am also suspiciously monitored by the saleswoman. A mother with children has just entered the store and she looks at me with an indignant glance at my oldest daughter when I say: “You have to choose a coat that is good and that you also should love to wear it because it is your coat.” I feel like a pioneer as seen in the sixties who fought for the rights of women. I fully enjoy this and help my youngest daughter pick out a total of seven new gowns. Walking in a hump of coats we move towards fitting room and again I get the same pair of Argus eyes that followed me earlier this afternoon. The saleslady asks whether we really need no help and i hear in her voice, that I am condemned to be the single father who knows all but has no control. As always I reply:” No thank you we are doing fine” and now I walk with mixed feelings through the store.
 

At one side I'm flattered and on the other hand, I feel hurt. After an hour we leave the shop with two brand new winter coats. As we are heading home on our bikes. suddenly I ask myself this question: What will my wife think of this? The weather is beautiful but because daylight starts to fade early, it cools down very quickly. My thoughts wander off again and I muse over past years. The years that I was a child. After playing outside you came home and often you would smell something nice that you could eat. Now I have to play that role. As it is already quite late, I choose to eat something easy.During diner those double feelings are there again and I really doubt myself. Actually now I recognize myself in the feelings that my wife must have had for years. She phoned me at work to ask what color the sun screen should have for example, she should buy. The children may stay up until mum comes home and of course to show the new coat. After dinner, we are still having some fun at the table and a little chit chat. When we hear the frontdoor open we are waiting anxiously. We have just hung up the new coats as they hung there for ever. My spouse comes in with one of the jackets and asks:” Who is this?” My oldest daughter also resolutely answers: “That is mine and I have selected it myself.” I am relieved that no vindictive remark follows a remark about the color or the scope: “Why was I not asked to go with you?” So I confirm to myself that I can do these things too. Yeah, Well I live in a "girls home" and the shopping I cannot escape from (not that I really mind.) I start to think again: Am I so different than all those other men? Do I have maybe one or more female gene, or are there are more of these dads out there?
 

At one side I enjoy my success and on the other hand, I doubt whether all this is normal. As the evening has fallen I sit with my spouse on the couch and then I doubt again. I'm too soft to determine what is on TV. My wife is usually has the remote and I must say I'm not really a typical male if it comes to preference for things such as football and Formula 1 racing. After all those years these things can not really fascinate me. Again I think: “Am I so different?” I just enjoy my time and I spend it with my children. The happy faces are magic to me when we do something fun again. Laughing I remember this afternoon with my girls. My youngest daughter took all seven coats that we had picked up and she said that she wanted them all to take home.
 

My answer was:”If that bold guy from the postcode lottery is coming along you can take all seven “ Bewildered the mother with children looks at me, after this remark she leaves towards the counter to checkout. I believe they fled the store because she was feeling uncomfortable. And perhaps because she also wants a man like this, and also one that could try things like this with his kids! Ok, I'm not a "superman" but then I do not play soccer on my free Saturday and on Sunday I am not going to fish. Once again I feel a bit double.
 

On one hand I am different and on the other hand, I enjoy all the time that I can spend with my “girls.” Luckely I am not so attached to the rest of the herd and pleased with myself. I am aware that the danger constantly lurks in me but I am not affected at this the point.
 
Enjoy of all the moments you get, because before you know they are gone.


The Old Sailor,