"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

Happy Birthday Nanna

A Million Times You never said I'm leaving
You never said good-bye
You were gone before I knew it
And only God knew why
A million times I've needed you,
A million times I've cried.
If love alone could've saved you,
You never would have died.
In life I loved you dearly,
In death I love you still.
In my heart you hold a place,
No one else will ever fill.
It broke my heart to lose you,
But you didn't go alone.
Part of me went with you,
The day God took you home.
©anon

Love Thy Self

Noone wants to be fat. I mean why would they in this society. All the size 6 models everywhere we look. All the beautiful gorgeous actresses everywhere. Society hates fat. Fact.

To some people the photo here would make you want to throw up. The photo is called "love thy self" and is a self portrait from a marvellous photographer called Raven Girl. Her website is http://www.ravengirlphotography.com/ She gave me her permission to use this photograph. But to others it is the upmost beauty. A real woman. Full breasts and a round stomach which is ideal for nuturing life.

Why does society hate fat so much. One the health thing. Yes being overweight can be unhealthy but why are there overweight women out there, such as Dawn French, who are fit and healthy but yet so obviously overweight? The other is the stigma. Omg the horror of being fat. Well for once before you criticise how about putting yourself in that persons shoes.

Imagine being fat. Stood at a bus stop waiting to go pick your child up from school. And someone drives past and shouts "haven't you ever heard of slim fast?". Now imagine this. Imagine this person has post natal depression and this just makes them feel rock bottom. Imagine this person now goes home and locks herself in her house for 5 years because she is scared of what people think of her.

Sounds stupid huh? But that person was me. I finally got over the depression and went on to lose 8 stone. But since then I've gotten sick and put on weight and all the old demons have returned. I do not like going out because of my size. And once again become a recluse.

Because of society.

People have this perception that fat people sit at home all day and gorge. I can honestly say Yes I do have days where I pig out...but don't you? I know many slim ladies who pig out a lot more than I do but then starve themselves living on soup for the next 5 days. Surely this too is an unhealthy style of living.

I, myself, should hold my head up high. I know I am pretty, and have awesome hair. I know I have a fantastic personality. But because of society and the way it is, people see my size and straight away judge me. They are wrong. Not me.

And as Eleanor Roosevelt once said.... "Noone can make you inferior without your permission".

Maybe I should take note and venture into the big bad world once more.

Ty to my dear cousin *Wildernesschic" for the awesome award.

Virtual Life

Virtual friends. Are they real or are they just that. Virtual. Well to me they are very real.

2 days before New Years Eve 1999 I got my first computer and went straight online. I spoke to my very first online friend. Jason. We are still friends today.

To me, online friendships, are better than offline friendships. Why? Because people see the real you. People see the person before they see the image.

People judge by appearances. People see a person and automatically assume they know what they are going to be like from their appearance. But online relationships the person sees your personality.

My online personality is pretty much the same as my offline personality. I'm a little more open with my emotions online than I am offline. I think this is because I have gotten to know the other person on the other side of the screen before I open up. Offline I trust people too easily. Online I am totally different. It takes me a while to trust someone and when I do I realise I usually am ok about them and can open up.


I have made so many dear close friends online, some are like sisters to me. Some are closer than that. And some just are my world.

Where were you.....

....8 years ago today. Do you remember where you were? Exactly what you were doing when the worlds most horrific terrorist attack was to hit mankind? I do. And I'll never forget.

I was on my computer chatting to a friend when my then partner ran upstairs and said "omg a plane has just gone into the world trade center" He then proceeded to draw me a picture of what he had just seen on tv. He then when back downstairs and within seconds ran up again to say "omg another has just gone in. It cannot be a tragic accident. It has to be terrorists". I then told my friend Janine to turn on the tv. She was in Chicago and it was strange that I in the UK was to find out before she was. It didn't hit me at first. I didn't "click" on that they were passenger planes. I thought it was "just" a single pilot crashing into a building. I thought maybe 10 people would die. This of course is bad in itself but the reality didn't hit me until about 10minutes later when I went to watch it on the tv and I just felt like I had been hit in the stomach.

The thought that nearly 800 people could be dead made me feel so sad. Scared. And sickened.

I proceeded to talk on aol and to watch the news. My partner went to get the children from school and I was left alone. The plane then went into the Pentagon. I have never felt so alone and scared as I did then. Thoughts were boggling through my head. What on earth was going to happen next. Is the UK next. Are we going to live this night through? I was a layperson in the UK. What on earth were Americans feeling at this point?

I couldn't watch tv without feeling sick. The images of the people jumping from the building haunt me to this very day. How bad was it that jumping to their death was a better alternative?

I was in the chat room on Aol and each time an online friend signed on I felt relief. Barbara my dear friend in NY hadn't signed on. My heart was in my mouth. Barb is like a sister to me. She eventually signed on and I cried with relief. The same goes for Randie and Dee. To just see their font gave me such an overwhelming relief.

Then Jessie signed on. Her ex husband had gone to help out and had gone missing. He never came home. She was distraught. Even though she was no longer with her husband they were still friends. We prayed and prayed. But he never returned.

Several more regular chatters and friends came into the room that night and several more had lost friends or family.

That night I got both my boys and put them in my bed. I prayed to God that nothing would happen that night. I told both boys I loved them with all my heart and slept holding them tight.

I am still to this day haunted. I have memorials around my house. Up until the 5th anniversary I hung a USA flag outside my house ever year on 9/11.

I was lucky enough, thanks to my Nanna, to visit USA on July 4th week 2002. A year after it had happened. I stayed with Barbara and we visited ground zero and it was no more than a clean building site. But it was eerie. We had parked the other end of Manhatten and even to a local person it can get a bit confusing and we got a disorientated and couldn't find ground zero. We got close and all of us got goose bumps on our arms and we all, including myself who had never set foot in Manhatten before, said it's this way and pointed. And we all went in the correct direction. It was quiet. It was as if Manhatten had stood still at that point and no other sound could get in. It was as if as you got close Manhatten was giving it's own respect to the dead by blocking out the traffic noise and for anyone that's been to Manhatten will know it is a noisy place! I laid some flowers down and said a prayer. And cried. I sobbed. For the people who died and more so their family's and friends who had to deal with the aftermath. I thanked god for the hero's who fought that day.




















And I thanked God I was alive.

Loosing My Best Friend

In January I lost my best friend so it's only right I dedicate my first blog to her.

My friend. My confidant. My advisor. My guardian. My guide. My grandmother.

Mrs Stella Patricia Madigan nee O' Hare who was 87 when she passed away on 16 January 2009.

Nanna was an amazing woman. She lit up the room when she walked into it. And she made even a stranger feel like they were the most amazing person in the world. Everyone adored Nanna. My Nanna was radiant.

Nanna lived an eventful life.

Nanna was a Nanny for a Spanish banking company. She became life long friends with the family but sadly had to return to UK due to bad health.

She was a red cross nurse during the war. She met a young man called Jack Yeoman and they fell in love. Sadly when he left to go to war Nanna broke off the engagement until he returned saying that it wasn't right while he was away. She missed him dearly and one night dreamt of his plane being shot down. Next day she was informed that he had been killed in action. A few days later a letter arrived which was to be sent to her if Jack died. The letter was beautiful and is now on display in the Imperial War Museum and is also published in a book.

Nanna went on to marry Grandad Richard John Madigan. She had 4 children, one of whom is my Mum. She was the most wonderful grandparent a girl could wish for.

I miss my Nanna with all my heart. But I know she is happy with the angels looking down on us all. I feel her presence.

She was the person who I ran to when I needed to cry. She was the person who I rang for a laugh. She was the person who I turned to if I needed to be called beautiful. She was the person who I went to for a stern telling off.

I miss all the cuttings in the post of girls with curly hair. I miss the lottery tickets. I miss the phone calls. I miss the stories of your past.

We will meet again one day Nanna. You will sit with me and sing me songs. Tell me I am beautiful and am "your Louise".

Love you Nanna Stella. Always and forever. Diddily Po!