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,

Getting back to work has hooks and eyes

Dear Bloggers,

At the moment my challenge is to find a new job, which I can fill in with my needs so they fit better with my illness.

I've also applied for a job as a bus driver.

Most likely there is for the employer financially support possible for me to integrate within the company.

A part-time job is better than no job at all, and after all my efforts that I made to return to work and to get in such a condition again that working would be in the possibilities.

Research has shown that most people on benefits want to work.

But there are many obstacles, so face the unemployed and disabled.

The majority of people on benefits want to work.

This became clear from the published report. “Wel of niet aan het werk” of the Social and Cultural Planning Office and the Council for Work and Income.

Unemployed, disabled and workers were interviewed for the study of the report. The report shows that the willingness to work among beneficiaries is high. Of the people who are partially incapacitated, 57 percent wants a paid job. Even the wholly disabled says one in five that they want to work. The study also shows that many part-timers have the desire to expand their job. Of the respondents who have been unemployed and currently work, says 40 percent to work longer hours.

It is not always about the money that beneficiaries want a job, the study shows. The disabled have the need of other social contacts and a meaningful time use to be the main motives.
People in jobs who want to work more hours, give more money as a key reason.

The report shows that disabled mainly because of health problems not find suitable work. In addition, they run around with the idea: “ I do not find a job” for a disabled or unemployed this is the main obstacle. The part-time favorite is the respondents: half would prefer between 12 and 35 hours per week.

There is much criticism of assistance to return to the workplace. More than half of the respondents experienced insufficient support in re-integrating. The Social Services, benefits agency UWV and re-integratoin companies scoring a thick below average. They get a 5.5 average on the scale of 10. With institutions like this it is often a lack of personal support. The return to work after long illness represents a serious problem for many. Half said they had been able to return to work faster if there would have been better measures taken, including a re-assignment or a different employer.
The reaction is far too slow in these passive, lingering organizations.

The report is a support in the back of the cabinet, more Dutch people will have to work. This is necessary to cover the costs of aging better able to absorb, but also to prevent people despite economic growth and labor shortages at the standard model. Beginning this year, said Minister Wouter Bos (financial minister) There is more work in the labor market. The most important issue in the Netherlands. Enough labor is offered - 700,000 work-wishers, was calculated in 2002 but remains unexploited.

Despite extra efforts to help them get started, decreased the percentage of disabled people since 2002 with a job. Only four in ten have work.
There should just more projects being launched which not only long-term unemployed but also can be used for the disabled. The coalition government has already appointed a commission headed by TNT CEO Peter Bakker. That should make proposals for employment to increase over the current 70 percent to 80 percent of the workforce in 2016. This Taskforce Plus Part-time, that was installed on April 8, should also seek opportunities for part-timers, especially women, to encourage more working hours. The number of employed persons rose by 2.2 percent last year to over 7.7 million, but a relatively large number working in small jobs of less than twelve hours per week.

The Old Sailor,

Bad days can have good moments

Dear Bloggers,

For now this will be the last blog written after work as I will write the coming ones from ashore Due to heavy pain caused by some kind of arthritis like problem, I have had a few bad days but I have enjoyed the good moments of them. It is just that the job is becoming too heavy for me at this point and I have to live on strong painkillers just to make it through the day. So I will call in sick for the next few months and hope that they can at least give me a diagnoses of what is hitting me so hard.


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I must say my days go pretty well. I'm past feeling burdened by every thought, sight, body movement, and interpersonal interaction. I've moved into a phase of feeling mostly like myself while still experiencing moments of muscle cramps and muscle aches each day. (Surprise!)
Only the nights are like a cheap horror movie, I wake up in the middle of the night due to this razor blade sharp pain attacks and they come without any pre-warnings. I have to get up and go for a hot shower too take the sharp edges off.



A wise and elderly person (my dear mum) told me years back when I was a little sailor, that even when it is though times you have to try and look for the sunny side of live, and it can be pretty clouded I can tell you.



"Sometimes it's hard for you to keep up the dance of daily life while you are processing your feelings. Nevertheless, you can do it, even if you are hurting inside. Keep in mind that your emotions are raw and tender now; they wouldn't survive in their present form if they were on public display. Don't judge yourself negatively; you'll know when to share your heart."

I read this once somewhere and saved it in my notes for later and look it became useful today .

I thought that was pretty applicable! I am keeping up that dance. From the outside, all looks normal with me. (I think. I hope!) And I feel fairly normal — for good, long stretches of every day — from the inside. Although it is sometimes hard to laugh, when you are in a lot of physical pain, and having a sunny character that is held back by medication.





But inside is definitely where I'm keeping what remains of those raw, tender emotions and cutting through pain of all parts that can move. I've reached a point at which I don't feel better letting my emotions out. Talking about them doesn't help, but hanging on a bit and nursing them does. I am simply not the person that wants to be someone they feel sorry for. I hold my head up high as long as I can.

All in all, I'd say time is doing its thing.

The Old Sailor,