Tuesday, March 5, 2013

Caregivers, friends, understand Chronic Pain

ThoughtfulI found this post on one of the many forums that I am on, sharing and ranting and comforting others about my journey with Chronic pain.

The poster could never find out who was the original author for this, so I am posting this giving credit to the original author whoever that might be.

Thank you to the unknown author for such well said words to help us all~

**This is the letter to "normals"- People who don't personally live with chronic pain, but for those who know people with chronic pain**

These are the things that I would like you to understand about me before you judge me..
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me --stuck inside this body.

I still worry about school, my family, my friends, and most of the time; I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but, I've been sick for years. I can't be miserable all the time. In fact, I work hard at NOT being miserable. So, if you’re talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But, you look so healthy!" I am merely coping. I am sounding happy and trying to look "normal." If you want to comment on that, you're welcome to.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday, doesn't mean that I can do the same today.

With a lot of diseases you're paralyzed, or can't move. With this one, it gets more confusing every day. It can be like a yo yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute.

This is one of the hardest and most frustrating components of chronic pain. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day, I'll have trouble getting to the next room.

Please don't attack me when I'm ill by saying " You did it before" or "oh I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally.

If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do. Please understand that the "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time.

Telling me that I need exercise, or do some things to "get my mind off of it" may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don't you think I would? I am working with my doctor and I am doing what I am supposed to do.
Another statement that hurts is: "You just need to push yourself more, try harder.." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language.
Also, Chronic Pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression. Please understand that if I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now. It can't be put off or forgotten just because I'm somewhere, or I am right in the middle of doing something.
Chronic pain does not forgive, nor does it wait for anyone. If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying.
If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor. If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be "normal." I hope you will try to understand my situation, unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general. In many ways I depend on you -people who are not sick. I need you to visit me when I am too sick to go out.
Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to normalcy of life. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I ask a lot from you, and I thank you for listening. It really does mean a lot to me. ♥

Monday, March 4, 2013

Autistic People Are Amazing

Its Children's Day Kiddos! I recently discovered that a google search for "autistic people are" returns some horrible horrible autocompletes, and there is a movement a foot to help Change the Google results by writing blog post about this, and highlighting how special, amazing or awesome people with Autism Spectrum Disorders are.

My son is amazing. He knows almost everything about every British royal members from 1600 on to today. He know the history of almost every video game in existence. And he is really funny and making parody songs to existing music. I love him. He is Autistic and he is amazing.

My daughter is amazing. She has an incredible vocabulary for a little girl and amazing insights into things science and math. She learns extremely fast, and when she is motivated she can accomplish almost everything. I love her. She has Aspergers and she is amazing.

I have Aspergers. I have struggled through life with it not knowing it until this year. God though, has given me amazing gifts for music, for writing and spinning words together. I matter. I have Aspergers, and God has made me amazing.

I hope you all see the amazing side of everyone you meet, and especially those who you have to look harder sometimes it see that amazing-ness.

It's the little things...

Red Couch Project Set 8 (13 of 19)
My Aspie daughter and I have been having some friction in the last little while.

I don't know to keep sane when my Aspie daughter runs as fast as she can through the house and leaps onto the sofa, ignoring my pleas and demands and everything else as she stops, turns and then runs like a jet engine the other way to start the run again.

I find the times she repeatedly interrupts me or anyone else while we are having a conversation just absolutely aggravating.  And no matter how hard you try to tell her to wait and not interrupt, she insist that she needs on speak now.

There are also the times that she is told not to jump on the sofa, and says she wasn't "jumping", she was "hopping" and the argument goes on and on as she finds some part of what I am labelling that doesn't match her interpretation of it.


Then it hit me. I am having a hard time with some of these things because of my Aspie rigidity. She is invading my sense of right and wrong, just as she feels I am invading her sense of right and wrong.

There are so many times that the Aspie dance we do is a beautiful and interesting and intriguing one as we are two similar souls, that share unique to both of us traits. And there are other times where it is like we are on a merry-go round that is going at top speed, and we are both trying to hold on, while also trying to get onto a horse.

I love my daughter very much, and the last year has made me especially fond of her uniqueness and her brilliance and her poise and eloquence. It has been special to both of us to know that we share being Aspies. It has bonded us together like nothing else has.

I need to remember that she is a child, a brilliant child, but a child. She is in a world that does not work or think like she does. I have had 37 years to learn how to tread water in this world, and I have been conditioned to what I think the world expects of me, and I can't expect her to know all these things yet. And maybe some of these things that I have been conditioned to are not important, and she and I both need to learn how to be ourselves in the world.

Being an Aspie is nothing to be ashamed of. It has its many challenges, especially in dealing with people in the world, but it is a good thing that does not need to be "cured". I need to stop thinking that I need to help fix her. I need to help guide her, navigate her through this world that is terribly mixed up in our eyes.

I hope if you are reading this that you can see the incredible beauty and value that is in anyone who has Autism. If you have Aspergers, take heart, and step back, and enjoy your uniqueness and your gifts that you have been given in this world.

I can't wait to see my daughter grow!