Question
thanks for your responces and it is nice to hear about people in wheelchairs that have made a great life for themselves.
I don't mind answering why i'm in a wheelchair. It's becuase I was fine up until I was nearly 3 then I got this rash and started falling over all the time, the doctors didn't know what it was but eventualy I was diagnosed with Dermatomyositis (JDMS for short)
It meant that overtime my muscles got weaker and weaker, the drugs they gave me helped to slow this down but it made my bones weak.
I broke my leg when I was 4 but recovered from it. I went through ups and downs but by the time I was 7 I ws walking and learning to go up and down the stairs.
the disease came back though and I ended up falling and breaking my leg again, It wasn't a bad break and I got back on my feet but wansnt steady then just before my 9th birthday I broke my leg again.
I neve got walking again after that.
my muscles are now to weak and I have been in a sitting positon for so long my legs cannot straiten more than in a 90 degree position.
The thing is I feel know pain or anything I have just reached a point where doctors cannot do anything more for me. I feel slightly afraid that the disease will return agai despite the doctors saying this is extremly unlikely.
I do get around in an elctric wheelchair and I am becoming quite independant so I should be happy and except everything, but some days it's tough.
I do see myself as an unnatractive person and I have very little confidence, Matthew keeps me going but not much else, I have a few close friends but even this will change in a few weeks becuase they won't be at my college.
I hate that I can't talk to my mum about all this as she has been through it worse in someways. io don't remeber when I was first ill and was too weak to feed myself and could barely move my arms. She has raised me and my 2 sisters and know my brother as well she can do without me moaning about how scared I am for the future.
her moto is it will all work out but she doesn't know and she doesn't know how I feel about having children, realy she is clueless to whats on the inside thats why I want to know if I should find a councelor or something becuase it is good to talk about it and not keep it bottled up like I am constantly doing.
I don't even cry anymore they never know when i'm sad becuase I don't show it the only place where I feel I can let it out is when im alone before I fall asleep but its just so tough sometimes.
Kirsty
Answer
Kirsty, please don't be upset, because we have the same name . Actually I spell mine Kirstie...but how could I not write?
It sounds like you have indeed had a rough time of things. To me you sound like a very strong person. It also seems like the thing that you want most in the world is for someone to love you unconditionally. Unfortunately this is idealistic...however you really do have a lot to offer the world and people in it. Don't sell yourself short. I know...easier said than done right? But you are young and you have a lot of time to do all of the things that you want to do...I just turned 30 and am just now figuring all of this out....
It sounds to me like you are a really good person...you should have no trouble making new friends...think of yourself as being an inspiration to others...look how much you have gotten through already.
Just hang in there. Trust me, it will get better...
Take care of yourself...
Kirstie
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No one can make you feel inferior without your permission.
Answer
hereubb/smile.gif
. Actually I spell mine Kirstie...but how could I not write?
It sounds like you have indeed had a rough time of things. To me you sound like a very strong person. It also seems like the thing that you want most in the world is for someone to love you unconditionally. Unfortunately this is idealistic...however you really do have a lot to offer the world and people in it. Don't sell yourself short. I know...easier said than done right? But you are young and you have a lot of time to do all of the things that you want to do...I just turned 30 and am just now figuring all of this out.... . Actually I spell mine Kirstie...but how could I not write?
It sounds like you have indeed had a rough time of things. To me you sound like a very strong person. It also seems like the thing that you want most in the world is for someone to love you unconditionally. Unfortunately this is idealistic...however you really do have a lot to offer the world and people in it. Don't sell yourself short. I know...easier said than done right? But you are young and you have a lot of time to do all of the things that you want to do...I just turned 30 and am just now figuring all of this out....
It sounds to me like you are a really good person...you should have no trouble making new friends...think of yourself as being an inspiration to others...look how much you have gotten through already.
Just hang in there. Trust me, it will get better...
Take care of yourself...
Kirstie
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No one can make you feel inferior without your permission.
Answer
hereubb/smile.gif
It sounds to me like you are a really good person...you should have no trouble making new friends...think of yourself as being an inspiration to others...look how much you have gotten through already.
Just hang in there. Trust me, it will get better...
Take care of yourself...
It sounds to me like you are a really good person...you should have no trouble making new friends...think of yourself as being an inspiration to others...look how much you have gotten through already.
Just hang in there. Trust me, it will get better...
Take care of yourself...
Kirstie
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No one can make you feel inferior without your permission.
Answer
hereubb/heart.gif
Kirstie
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No one can make you feel inferior without your permission.
Answer
Kirsty:
I don't have your physical problems, but I have physical limitations, bad scars, twisted muscles from an accident when young. I am still amazed at the man who loves me, still, after 21 years of marriage. He never even notices any disfigurement, he just taps to the music in one of the indented scars on my leg, like it was nothing wrong at all.
It amuses me.
You might get inspired if you read some of Joni Erickson-Tada's books. She is a para-plegic; became paralyzed in a diving accident at a young age.
She is now married and is very happy, and paints with a brush in her mouth.
No one can predict your future. But if you stay bottled up, trying to look happy on the outside, you will not be being all that you are. Your parents will miss out of being a comfort to you, and you may miss out because you are busy being trying to be invisable. Anyone that loves you would not want you to suffer alone, esp. not with you thinking it helps them!
Babies are easy to love because they love back unconditionally, but we don't remain babies, we all grow up and have expectations, hopes, dreams for different things. Your brother will grow up too, and move away from you and his parents, to go do his own thing, like all babies do. That is another very hard loss in life, when a child moves away.
So you need your own life.
If you open up and come out with the truth of your fears, you will feel much better over time and will be able to see some options.
Like you can go to college and meet people/get a job, etc.
There are always small minded people. But I found that when I accepted myself as I am, my body as it is, and got a sense of humour about myself, then others accepted me too. I'm far from perfect in any way, but no one is perfect.
Plenty of people are attracted to those that accept themselves. It helps them feel OK about who they are, too.
You really seem like a wonderful young lady with a lot to give.
I hope you will share your burdens with your mom.
It is OK to tell her you don't want to hear it will all work out and ask her to just listen and let you express what you are feeling.
Part of being strong is being honest and vulnerable with people that love us. It is a healing thing to grieve, and you need to take time to grieve your real losses, and the losses you fear you may have in the future. It is totally normal to feel lke you are feeling. This is something you have to work through yourself, but people are here to provide support and understanding! Please keep in touch with us!
[This message has been edited by friend (edited 07-03-2002).]
Answer
Kirsty I just don't have a lot to add to these wonderful responses, but I do want to say please, please don't think of yourself as an ugly wheelchair person. That broke my heart!! Your are a young woman, you have so far to go and so much to see. One person said that she didn't figure out many things until she was nearly 30. I am 33 and I am amazed at how LITTLE I knew at 16, 18, 24. I have changed tremendously over the years. I promise that if you want a relationship you will find one, I know you will. You will not always be alone.
As for your love of the babies, I can relate to that. I am 33 and baby-less. I will probably never have a baby, and all I can say is that I understand how you feel. I can't make it better, I can only nod and shed a tear...
Love and blessings!
Answer
Kirsty honey-
Sorry to hear you feel so down. I know it's hard to get help sometimes, but surely your folks would understand that you need help, and a psychiatrist is a doctor same as an opthomologist is. It took me a while to seek help for my depression and anxiety, but I called a mental health clinic in my city and went in to talk to the dr. there. He was very nice and helpful, and I felt so much better after talking to him on the phone and when I went in.
My friend lives in Yorkshire, and he suffers from post traumatic stress disorder, and I know he's sought help there in Britain. There ought to be somewhere you can go and get CONFIDENTIAL help. After all, 16 is practically adult.
last and most important - DON'T talk to yourself so harshly!!! You are not a freak - I have a hard time telling myself the same thing (I limp from having a split spinal cord and a severly atrophied leg - I was born with this disease). Trust me, I'm sure you're a beautiful young thing. When my kids (4 and 7) first asked me "why does he/she ride in a chair?" when they were toddlers, I always explained to them that the wheelchair was just an alternative way to get about, and they have an appreciation for people with health problems, from watching me go through garbage with my back and feet over the past few years of their young lives. People don't look at you like you're a freak, girl. Hell, the pain I'm in while walking the short distances I can (I also get ulcers in the bottoms of my feet), this may sound silly, but I wouldn't mind a spin in a wheelchair.
I feel for you, Kirsty - it's never easy facing health problems when you feel that no one understands you. I'm still young too - I'm 27, and sure life gets you down, but you need to focus on the things that make you happy - like your brother. I was like that with mine when he was born. You're just perfectly maternal, and you'll be a great mother and wife someday soon enough. Heck, enjoy being single!!!!!!!
Good luck girl. I'll think of you often and I wish you the best. You can always post back to me if you want. Take care!!
Alex
[This message has been edited by Alex Shea (edited 07-04-2002).]
