AGE LIKE A SEA GLASS

I want to age like sea glass. Smoothed by tides, but not broken. I want my hard edges to soften. I want to ride the waves and go with the flow. I want to catch a wave and let it carry me to where I belong. I want to be picked up and held gently by those who delight in my well earned patina and appreciate the changes I went through to achieve that beauty. I want to enjoy the journey and always remember that if you give the ocean something breakable it will turn it into something beautiful. I want to age like sea glass. ”

Walk a Mile in My Shoes....

Someone shared this with me a while back and it says what maybe I try to put into words unsuccessfully each and every day. Though I tweaked it a bit..it pretty much sums up what I have been dealing with for the last five years.

Letter to people without chronic pain or unknown illness

:

Having chronic pain, chronic or unknown illness means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about them and their affects, and of those that think they know, many are actually misinformed. They can not see anything visible , therefore it must not exist.

In the spirit of informing those who wish to understand or care :

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 or are here all the time, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about my family, my friends, life and most of the time, I’d like to hear you talk about yours too.

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. Riding for 30 minutes today does not mean I can do it for an hour or at all tomorrow. 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 and can’t move. With this one, it gets more confusing everyday. It is 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 unknown illness. You never know what is going to happen next. What is going to hurt or cause you pain.

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, 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 or get angry with me. 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 try and 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 do try not being miserable all the time. So, if your 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.

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? Do you really think this is the life I would choose for myself? Do you really think that I enjoy this being my life, my normal? By the way what is normal I no longer know.

Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain or unknown illness can affect 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 and unknown illness may cause secondary depression (wouldn’t you get depressed and down if you were sick constantly for months or years and had no idea why?), but it is not created by depression or anxiety.

Please understand that if I have to sit down, lie down, stay in bed, 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 in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If I seem touchy, its probably because I am. It’s not how I try to be or want to be. As a matter of fact, I would like very much 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 all— 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 not be able to do any of it somedays. I may need you to take me to the doctor or to the store. You are my only link to normalcy. You can help me to keep in touch with the parts of my life that I miss and so wish I could have back one day. But please do not be upset or angry, because you have not walked in my shoes. And I can promise you these shoes are worn and beaten down now.

In the meantime, I will keep searching for a reason, a cause so then and only then, I can look for solutions and ways to hopefully be well once again. I can only hope that one day soon I can find some answers.

Lost in the Land of the Undiagnosed

Sometimes I feel lost. Lost behind the world of the diagnosed.

There are no fundraisers for me. No walks, no T-shirts, bracelets or ribbons. I am the lost within the lost. Aren’t we all in some respect? Trapped by our bodies and lost to the world. A Spoonie KNOWS what it feels like to cry in that hidden crook, lie about how we feel, and watch the world leave us behind. The feelings of loss lead us to a path into the lost.

But what of those that have no name? We have no answer for friends who care enough to really hear the answer to,” How are you doing?” We come across as liars. More so with each month, year, or decade that float by leaving nothing but a wake of pain in its path. We loose more and more friends. Those that were steadfast for 10 long years finally throw in the towel. We are convinced that these are the reason, which at least is what we think.

Okay, enough with the “our”, this is painfully with a self involved touch, about me. Perhaps I am alone in feeling this way.

I find kinship here in the boards. I know I am not alone in my suffering. And for that I will forever be grateful. But I admit the green monster that creeps in my shadow. He’s envious of the organized fundraisers and wishes he could have a name. He is Envy. And he makes an ugly person of me. On the days he sticks his head out, I am nasty. I may be snappy or rude, but I am ALWAYS jealous and angry about being jealous instead of supportive. Even writing it makes me feel like I’ve an ugly heart.

How come I can not find it in me to just be glad to have the sisterhood? The one’s offering an ear or hug or spoon. And like schizoid-typo, I am both. I wish I could walk for Lupus and MS; while in kind, I long for recognition for MY mystery. It is just as real, but how does one address the invisible? How can I get to healing myself when I’ve no idea what’s wrong.

It’s autoimmune they say. Those are neurological symptoms they say. But you are an enigma is the written diagnosis for me. Hurrah! I’ve not only felt lost behind those with a name, but I’ve lost my friends. I’ve lost some family. And most disturbingly, I’ve lost doctors who lost patience in my frustrating condition. *sigh* All loss, and lost.

Why on earth should I be jealous of a named chronic condition? Why do I crave it so? Perhaps I will never know. It just is. But my fellow Spoonies…I will always have love for you and hope to never feel lost in our connections!

Alas, I will continue to creep among the diagnosed. Hopeful for their comfort and financial gain to work that sucker to a cure! All while envious of their Names in the tabloid! These are ugly diseases, but as I’ve learned in here, always existing in beautiful carriers.

Written by Sonja McDaniel

I Didn’t Know…

I didn’t know back then that life would change forever. I didn’t know what pain was then. I didn’t know the sacrifices and allowances I would end up making. I didn’t know my hair could hurt. I didn’t know that I would have to give up the things that brought me the most joy because I just couldn’t do them any more. I didn’t know how my limits would change from one day to the next. I didn’t know I’d have to fight so hard for what I need.

I didn’t know I could be okay with wearing socks that don’t match. I didn’t know I could cry beyond the point of tears. I didn’t know how strong I could be until I was forced to be. I didn’t know I could live for weeks on applesauce and Sprite. I didn’t know I could get lost in Target. I didn’t know I could crack a joke and laugh in the worst of situations because I just couldn’t cry anymore.

I didn’t know I could lose what felt like everything and still feel as though I had everything I need. I didn’t know I could keep going past the end of my rope. I didn’t know that when I felt the most alone and exhausted, someone, somewhere would inspire me to fight one more time. I didn’t know I could sleep 20 hours and still be tired. I didn’t know I could fall asleep anywhere. I also didn’t know I’d regret it when I woke up.

I didn’t know that nothing beats stupid comedies or veggie tales on a bad day. I didn’t know just how much pain I could stand. I didn’t know how desperate I would feel sometimes. I didn’t know how much I’d have to learn. I didn’t know how much I’d have to advocate for myself because there was no one else to fight for me. I didn’t know how good fuzzy socks feel.

I didn’t know I could love God and hate Him at the same time. I didn’t know sometimes prayer would be all I’d have. I didn’t know some of my best friends would be people I’d never met. I didn’t know that I wasn’t alone. I didn’t know doctors could be wrong. I didn’t know that there were others going through this. I didn’t know there was support.

I’d say I wish someone had told me all of these things back then, but I do know I wouldn’t have believed them.

by Agnes Reis

A Songbird Lives On...

There are times when you hear a song that it catches your attention, there are times when it leaves you breathless and there are times it brings you to tears. Watch the story of a "Songbird" whose left us way too early...yet only after her death does her music live on forever.

Thought for the Day...Anger

For every minute you are angry, you lose sixty seconds of happiness. ~Author Unknown

Just Trying to Cope....

Someone shared this with me recently and it says what maybe I try to put into words unsuccessfully each and every day. Though I tweaked it a bit..it pretty much sums up what I have been dealing with for the last several years.

Letter to people without chronic pain, chronic or unknown illness

:

Having chronic pain, chronic or unknown illness means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about them and their affects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand:

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’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about my family, my friends, life and most of the time, I’d like to hear you talk about yours too.

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. Riding for 30 minutes today does not mean I can do it for an hour tomorrow. 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 and can’t move. With this one, it gets more confusing everyday. 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 unknown illness. You never know what is going to happen next. What is going to hurt or cause you pain.

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, 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 or get angry with me. 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 try and 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 do try not being miserable all the time. So, if your 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.

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? Do you really think this is the life I would choose for myself?

Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain or unknown illness can affect 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 and unknown illness may cause secondary depression (wouldn’t you get depressed and down if you were sick constantly for months or years and had no idea why?), but it is not created by depression or anxiety.

Please understand that if I have to sit down, lie down, stay in bed, 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 in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If I seem touchy, its probably because I am. It’s not how I try to be or want to be. As a matter of fact, I would like very much 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 all— 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 only link to normalcy. You can help me to keep in touch with the parts of my life that I miss and so wish I could have back one day. In the meantime, I will keep searching for a reason, a cause so then and only then, I can look for solutions and ways to be well once again. I am not willing to give up ..I can only hope that one day soon I can find some answers.