Monday 18 April 2011

Disabilty Living Allowance !

April last 2010 i put in for DLA and they knoked me back because i could apparently walk 200+ yards. Now that was an indopendent doctor who wrote these lies about me, along with the help of my own GP who has knowen me from the beggining of my illness. Recently i went to my trial date for DLA and again i was knocked back for a reason i am unsure off untill i get a full copy of the minutes from it. 

There was one thing that stood out in the room with me and the 3 on the panel. The Lawer was VERY rude, The Doctor was extreamly nice , And the Sevilion who had a Visial imparment Was extreamly Rude and done everything posible not to just upset you but to make you cry. I am also aware that i am not the skinniest girl on the planet but i can not help the weight i am because of all the steriods i was on as a child, But do we really need some as rude as her to ask if u have concidered a gastric band or a diet? I dnt beleve we do. Then she proceded to ask me when i left school and why i wasnt as collage, To let you understand the collage near to my home in scotland is very large and i do not have the power in my legs or the energy to walk from class to class. She then asked me if i took my own medication and i was honest and said "Well i wouldnt want anyone else to take it so yes i do take my own medication".As a result she was unhappy and said nothing further. 

People dont seem to understand that the money that i have been receving since i was 8 years old, helped me in so many ways. It helped get me out of the house and do fun things with friends,but since they have decided i do not decerve this money i am now stuck in the house all day with almost nothing to do except read and play games on facebook. 

I never have expected any of my friends to understand my illness but what i did expect was for them to understand that if i do not have money i can not go, but they still want me to get money and go with them. My other friends are very understanding, they always try to make me go out and have a laff with them over by the loch near to my home, But sometimes i am just to sore to move and thats when they do not understand. 

Please comment 

love linzi XX 

Sunday 17 October 2010

Life With Lupus

I found my self going to bed and 3:30am and getting up at 10:00am. My Ex-Boyfriend(Greig) and my Best Friend(Lisa) made sure i took my Medication as they always do. Greig sleeps beside me because there isn't another bed in my house and Lisa sleeps in the spare room. I know they both want the best for me as they are always telling me, and sometime when I'm awake before them i realise just how much im lucky that they are in my life. Most morning when they are here i find myself standing at the room door watching them sleep as they dont have any worries about me or my illness they can just be themselfs. Sometimes i wish i could see into there minds to see just how they see me when i cant do what they want to do, and when im complaining of the pain in my legs or hands or even my body. Greig is such an amazing friend he is always there when i need him and is always at the other side or a proplem with a solution, and a hug as well. Lisa is also such an amazing friends and is always there when i need to talk about anything, the one thing she isnt so good at is the solutions or the hugs. The one thing i wish they were both good at was understanding Lupus more but i cant seem to let them read the facts about it, so i guess they will never truly understand just how i feel or why i feel this way. The emotions that are involved in Lupus are not only confusing to me but to everyone around me, as i am very well known for having mood swings and also having days were i just want to be alone.


Its like this picture says we want to find a cure for lupus and im hoping that we can in time. Every little piece of information we find in this condition is used to try to help us and we we grow it becomes harder to find the cause for it in the first place. With a little hope and a lot of faith we all wish for a cure to come alone for this condition. As the long painful days pass by we all seem to get used to having Lupus, as it seems to rule not only our daily lives but our future.




All i can really say is this i am lucky to have my friends and family around me when times are tough and when times are good. 

The Next photo and following paragraphs will show how Lisa sees me in my daily life.Her picture will be of a Purple Star. I hope you enjoy her thought and words.
hey i'm Lisa i've been best friends with Linzi for 18 years coming up for 19 years for the past 12 and a half years i have seen linzi suffer from lupus its been hard seeing her suffer, its a struggle for her to get up in the morning and all throughout the day when she gets a flare up her moods go through the roof she's near enough bi polar but its not her fault its a side effect of lupus  one minute Linz can be happy and smiley the next minute she's snappy and emotional . its a hard thing to see especially when her butterfly rash appears she hates it thats when the make up appears, i remember for years she was afraid to admit what she had but since she turned 20 things have changed  she told two of our closest friends that she had SLE and has a tattoo as she says " i don't just have lupus in my DNA i have it on my skin 2" she's not afraid anymore and i'm so proud of her and i'm proud to be her best friend 


 If anyone had any question about lupus or any other subjects in my blogs please dnt be shy and comment of e-mail me and al be sure to mail you back xxx xxx xxx xxx xxx xxx xxx xxx xxx xxx xxx xxx xxx xxx xxx xxx xxx xxx

Wednesday 6 October 2010

The Spoon Theory by Christine Miserandino

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.
Cartoon image of Christine Miserandino holding a spoon
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”.



© Christine Miserandino

Introduction

Hey there am linzi and im 20 years old and this is my First blog on Blogger.com.

This blog is going to be about me and my daily life with Lupus. The Invisible Illness.

I will try to post a blog atleast twice a week if not more. Depending on my health i will try to blog everyday as to how life is. I will also try to get people close to me to blog on this site so that everyone can see the outside point of view on Lupus.

Thank you so much for listening so far.

First blog will be as soon as possible