To be or Not to be

as asshole. That IS the question.

What makes people who work in the public sector want to be an asshole?

Take today for example. I rang Virgin Media to ask for an extension on my bill. I wanted 8 days. 8 measly days. I have a cash flow problem this month due to it being February and less days in the month for my money but still the same amount of bills. I was patronised by the asshole on the other end of the line. I asked him not to patronise me and what did he reply? Did he apologise? No he told me not to patronise him with my excuses.

Take this evening. Eldest son had a dentist appointment. For those that read this that don't know I am disabled. I use a crutch. And I was getting a cab to my eldest sons school, picking him up, going onto my youngest sons school, picking him up and carrying on to the dentist.

My eldest son was late out, we waited 5-10 minutes. The taxi driver said "You know Love we cant wait here all day". I said "well I gotta wait for my son haven't I?" He replied "well you're going to have to get out and call another cab" I said "I can't do that Im disabled". He replied "not my problem".  I was fuming. Told him I was making a complaint against him. And he replied "make sure you tell them it was your choice to get out of the cab" I said "excuse me but seriously it was you who told me" he said "no I never." I said "You have just said it" and I relayed everything back to him and he denied it until I said about the disabled bit again and said that he had said it was not my problem he replied "well it isnt". I just got out of the taxi and would you believe my son appeared.

I phoned the taxi company (Delta) and complained and got another cab. It meant I was late for my youngest by 30 minutes.

Now this asshole made me feel bad. He intimidated me. He felt he could be an asshole because I was disabled. He didn't expect me to bite back.  But I did.

But what drives these people? Why do they have to be so mean? Why is this world full of such hatred and nastiness. Why can't people just try to help one another instead of pointing the finger and accusing. Maybe if they did then this world would just be a slightly better place.

Masks

Living a life under a mask
Hiding ever tear
Living your life shut away
So you don't have to show your fear to the world
Smiling when you feel like dying
Laughing when you want to hide
Crying into your pillow so noone knows
What a life
This life is mine

Depression is a bad thing. Especially when it's cause by factors that you can't control. Me? I was a happy go lucky woman who couldn't care less if something bad happened. Now? I'm a miserable bitch because I just can't shake this feeling.

I've gone from a healthy slim girl to a fat ill woman. In a period of 3 years. Brought on by stress. My world does not seem to get any easier. Every time I turn a corner there is more bad news.

People think nothing can be that bad. No people have a lot worse in their life than me. Fact. But written down I have been through a lot. I should be proud of the fact I have come through this and am still standing but no I want to curl up and hide.

- Broke up from my partner after 13 years because he turned abusive
- Neighbours started harrassing me 24/7 
- Started a new bad relationship, he was in a bad relationship which I knew, I had hopes he would leave her. He never did. I got pregnant but because I've had part of my womb removed I could not carry my baby and had to have her aborted. That broke my heart and will never be repaired.
- Thought about killing myself but couldn't find a way of doing it without hurting my boys
- Started to get pain in my right arm. Later spread to my whole body
- Left him after realising I deserved better and carried on.
- Met who I thought was the one. Turned out not was he married but seeing half of England. Class    this as punishment for previous relationship.
- Found out my Nanna's cancer had returned.
- Lost my Nanna. Turned my world upside down.
- Son turned suicidal and stopped eating because he lost his Great Nan.
- Other son became bullied in school
- Got education department on back because eldest son had had lots of time off school because of asthma
- Neighbours got worse with harassing me
- My health was now critical. Hospitals ingored me and told me nothing more they could do and deal with it. Whole body racked with pain by now.
- Went from happy healthy size 14-16 to fat size 24 due to ill health and going from mobile to immobile
- Found out best friend of 20 plus years possibly has cancer
- Son still painfully thin
- Friends husband died suddenly

Reading all this may sound trivial but it overwhelms you. It blocks that light out at the end of the tunnel. It makes you ignore all the good things so you only see the bad. It is a darkness. And one I want to find my way out of. And I will. I will get there.

If Tomorrow Never Comes

Why does it take a tragedy to make you look at things and think and want to tell those who mean the most to you that you love them.

A dear friend of mine this week had the most devastating thing happen to her. Her husband died suddenly. No warning. Just a sudden horrific sad thing. I was talking to her with her husband in the room perfectly fine, a few hours before.

She is the most upbeat positive loving person you could meet and it's just heartbreaking to know what she is going through. I cry and have a heavy heart for her knowing her heart is broken.

Friends and family are the people who mean the most to you in life naturally. Friends sometimes than family. Even friends that you haven't actually met face to face can be classed as family. And when they hurt you hurt and it makes you realise that no matter what has gone on in this world, no matter what horrible words have been said by each person, that at the end of the day, no matter how healthy someone is, if it is your time to go, then so be it.

So please, if you have a loved one, or someone you haven't spoken to for a long time, someone you love please tell them that you love them because basically noone knows what will happen when tomorrow comes.

Friends and family in my life, if we don't agree on things, have said horrible things in the past, no matter what I still love you.

One Year on

From a place high above,
Where angels float in the sky,
To the very ground I walk on,
My Nanna watches over me,
Every step I take,
Leading me in the right direction,
Showing me the way.

Even though I know that she is in my heart,
I wish she could be here watching me,
As I develop into a beautiful young woman.

No matter what,
No matter how far away she might be,
She is still my hero,
For she has changed me.

The death of my guardian angel,
Was the hardest year of my life,
Even though she moved to the best place in the world.

I thought my life was over,
I did not get to see her often,
Because we lived so far away,
But even then she meant the world to me,

She knew no wrong.
Always wanting what was best for everyone,
Never putting herself ahead,
I've never met a better person,
To help me walk my way,
I never thought I’d get through this,
And still haven't today,
But knowing she’s always with me.
Makes me stronger in my everyday life.

You see, my Nanna died one year ago,
And how the pain hit me,
I thought it would never end,
But now her spirit is with me,
And I know she’s living a better life,
Sleeping with the angels,
In her comfy bed at night.
Sleeping With The Angels by Tanya E. Fowler

It's been one year on Saturday since I lost my best friend. It's been the hardest year yet and it doesn't get any easier. I miss everything about her, every single thing. The boys miss their Nanna Stella. Steven misses his nightly chats singing to her. One day Nanna we will meet again and you can sing to me, "all the breeze seems to whisper Louise". I miss and love you with all my heart.

I didn't write this poem but I did do the artwork. It is to the lyrics to the song below.
Artwork © originalkitten2008

This song reminds me of my Nanna too

"I'm Spending Christmas With Jesus This Year"
I see the countless trees around the world below
With tiny lights like Heaven's stars reflecting on the snow 
The sight is so spectacular, please wipe away that tear,
For I'm spending Christmas with Jesus Christ this year.
I hear the many Christmas songs that people hold so dear
But they can't compare with the Christmas choir up here
I have no words to tell you, the joy their voices bring 
For it's beyond description to hear the angels sing 
I know how much you miss me, I see the pain inside your heart 
But I'm not so far away, we really aren't apart.
Please love and keep each other, as my Father said to do
For I can't count the blessings of love He has for you 
I can't tell you of the splendor, nor the peace in this place 
Can you imagine Christmas with our Savior face to face?
I'll ask Him to light your spirit as I tell him of your love
Then pray for one another as you lift your eyes above. 
So, please let your hearts be joyful, and let your spirit sing 
For I'm spending Christmas in Heaven, and I'm walking with the King.
(written by anonymous....artwork by me (originalkitten))

For my Nanna.

But......you don't look sick.

I hear this all the time. But....you don't look sick.

Just because I don't look sick doesn't mean I'm not. I don't want to be sick but the fact is there. I am. Deal with it. I have Lupus, Fibromyalgia, Asthma and Hypothyrodism.

People who don't live with chronic pain don't understand what it's like to deal with it on a daily basis.

For those that don't live with it I want you to do an experiment.

Take a clothes peg.

Attach it to your arm.

How long do you last with it there?

Imagine someone living with 1000 clothes pegs all over their body every single night and every single day. And some days those clothes pegs decide to multiply into 10,000. They immobolise you and stop you doing all you had planned. And the worst bit is. You cannot remove these clothes pegs once they become uncomfortable.

I live like this daily, along with thousands of other people. Take yesterday for example. I have a lot to do at the moment. I had yesterday and today planned out. I woke up in pain. My legs were burning, my hands were burning, my shoulders were aching. And my day was ruined. I had to go see my son in his play and because of the pain I was in all I could think was "Get me out of here". I cried yesterday. I don't cry often but yesterday I did. Today though is a better day.

My life is like a rollercoaster. Some days I can be happy and manage my pain. Other days I can be like a child who wants her mother to say "there there it's ok" because the pain is so overwhelming.

See the picture. I did that. It is me. I am a 35 year old woman in a 85 year old womans body. 

People fail to understand how people with chronic pain cope. I also suffer with chronic fatigue. Some nights I can't sleep because of pain so then the fatigue is worsened which of course makes the pain worse and so on. Vicious circle. They see a lazy person who just wants to sleep 24/7.

Do you think sufferers of chronic pain like to spend their day in bed. As much as I like my bed and sleep I do not want to be attached to it. I want to go out and do things and see the world. Sadly, somedays my body will not allow me too.

I was told by someone "You have to fight it. You can do whatever you want. I have an illness and I fight it and can do what I want. Noone can stop you". Yes this is true.

But.... 1) Noone is stopping me. Something is stopping me. Totally different.
and
2) Your illness doesn't affect you physically and leave you in horrific pain.
I showed them an article called the Spoon Theory. And said this is how I deal with my life on a day to day basis. Below is the spoon theory. It explains it perfectly.

Read before you judge people. Understand before you judge people. They maybe you will understand, that just because you can't see something doesn't mean it isn't there.

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com



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

“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.”

Accusations

When one person makes an accusation, check to be sure he himself is not the guilty one. Sometimes it is those whose case is weak who make the most clamour
Author: Piers Anthony






Artwork by me ©originalkitten