Monday, September 14, 2009

It's Invisible Illness Awareness Week 2009 !!

Sure seems like I was just writing about Invisible Illness Awareness Week a few months ago, not one YEAR ago!!


Along with the importance of this week, this week and the past few weeks/months have found me facing a new set of challenges in the world of having a Chronic Illness/Chronic Pain. I have learned that Chronic Pain can still react to any new situation, and that I still am learning how to deal with it all. This week is important in getting out the word that many of the people that we all see, wherever it may be, whatever they may be doing, are suffering right before our eyes and we do not know it. Those that seem to be ok, but inside them is a plethora of issues.


Would you know this just by how I look?


The past months in my life have been extremely stressful both psychologically and physically. No one would know to look at me. I not only have learned to hide it well, but only those closest to me know the true ins and outs of what I have been going through. I know that we all experience stress. We all have pain at one time or another. Yet already having pain around the clock just pushes the stress into the muscles that run along my spine, ****Paraspinal muscles****, leaving them hard as a brick and in deep, long-lasting severe spasms. The stress goes along with the daily pain and deep into my spine, and together result in hot bone pain in my vertebrae, and stabbing, sword-like pain wrapping around my side to the front now.****Neuropathy--nerve pain****


Would you know all this by looking at me??


Would you believe that as I try to stay in an upright position without assistance; I simply look like another girl. Another lady. A woman. Whom is NOT ok inside. We must ALL try to remember that we can not judge a book by it's cover!! And my cover has become one that I can no longer hide too well anymore.


Just keep in mind that not all people who are experiencing chronic pain, chronic illness, etc., are home in bed. There are those of us that are still able (barely), to go out in public, to shop---me only with assistance, (simply looking like anyone else who has a cart-pusher and lifting helper along,) and I would kill to find a delivery service that could shop for me and bring it home, of course unpack the bags and put it away for me, (what a dream, eh?) without having to go through the huge hassle of the market. My biggest nemesis! And no one knows that as each isle is walked, my pain rises, my muscle spasms get worse, and I just want to get out of there!! I am so thankful that my son is such a giving and caring person; who helps me when I need it, being here when he says he will be, and giving of himself to me.


He said the other morning when he saw me, (I was crying in the morning as I do when the pain is high upon waking,) "It takes a very special person and a special spirit to be able to handle the pain you are in every day mom, and still have to handle all that life brings to all of us!" Which of course made me cry more. THAT is caring. Looking at me through empathetic eyes and trying to imagine what it is I feel daily.


Friends and family have helped me to get my life back together again when it was an absolute mess. It must be hard to be an only child, as so much is asked of my son in needed help. Yet he does it all with devotion, love and true caring. Without him.....


It is hard for me to ask for help, but I have learned. Wow have I learned!! And I found that if I ask, I know there is a 50% chance of a 'yes', and a 50% chance of a 'no'. No matter what the situation is that I need help with, I know that if I don't ask, I am not giving everyone in my life a chance to help me. I never realized that leaving out someone just because I think they will probably not help me, does me no good and gives me NO chance of receiving help of any kind. Involving those in my family and friend circle also makes them feel as if they are involved; even those that don't really want to be involved have been able to say their peace to me. They at least have been asked for help and have a chance to do so. Asking for help is a new found area for me. I do not like it. But this is part of having Chronic Pain that is only getting worse daily. Of course I need help. I will always need help. My diagnoses are such that getting worse pain with the problems I have in my back- is the only thing that will happen.


How much can a spinal cord be squeezed? How long can the herniated discs be there without creating more problems? How much must my bone overgrowths cutting off exiting nerves from the cord grow, before the pain becomes totally unbearable? How deep into my cord are the Osteophytes growing from the vertebrae going to 'stick' into it before more serious and longer-lasting sudden paresis happens? I don't know the answers to these questions, and I trust God to help me in all of this, and in the meantime, life goes on; yet I choose to live day by day. It's all any of us can do, and with a Chronic Illness, it is truly the only way to be able to deal with it all. Any more would be so overwhelming, as each day is enough to get through!!


Would you know this is all going on as I try to stand without a cane.....would you see anything that would give you an idea that I am suffering? NO! It is a quiet, lingering, hidden and silent world of pain that I live in.


That is what this week is for. To educate, communicate....get the word out!!!


I was flattered to be a featured Blogger on Lisa Copen's site for this weeks festivities. THANK YOU LISA!!! Ms. Copen is the founder and creator of IIAW. She has done so much for those of us that have a voice, yet we need more than one or two to really get the word out about those with INVISIBLE ILLNESSES. You can go to http://invisibleillnessweek.com/ to read much more about the reason for this week, and just how much it means to those of us that are suffering.


That's it for now, the morning pain is just too much for me right now to sit and write anymore.


Invisible Illness Awareness Week goes on all this week and you will see many bloggers writing about this. I commend all that are trying to make a difference for all of us, and thank those that are writing this week.


Gentle Hugs... <3

11 comments:

  1. great awarness post...you described in great detail the physical issuse you deal with.

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  2. It is very good info about illness awarness.It is both normal and illness. Anxiety is absolutely necessary to lead a healthy and creative life,it enhances our sensitivity,it alerts, warms and warns us,goads us into action,it could be a motivating force in our lives.

    foot pain

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  3. It is very difficult to live with a chronic illness and to live with constant pain ais again a very difficult task.But I appreciate your strength of mind.

    EMR

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  4. Hi Monica!!

    Glad that you found the post a good awareness one, as that is one thing that MUST be continued every day of our lives. Teaching others and the general public gentle awareness-- that 'they' may not SEE our inner illness, but we are not well. We are right in front of them, and dealing at that moment with our illnesses.

    I hope this finds you well dear, I am just getting back to 'normal' after a long time 'away'..need a laptop!!! Just can't make it to the computer chair as much as I could before. The posts are in my head, but can't get them typed. :-(

    Gentle Hugs......

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  5. I wish I could take your pain for a day. When it comes to pain, every person is indeed an island.

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  6. I note you haven't posted in a while I hope this does not mean you are in so much pain you can't. I have Ehlers Danlos a condition which in my humble opinion should be renamed agony. I have only just stumbled across your blog in the middle of the night unable to sleep due to pain. Your description of pain is raw and so true. You have my empathy & respect. Please keep posting it helps me to cope & feel less isolated. Take care.

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  7. PAIN & HEALTHTECH,

    Thank you both for your comments. It is always nice to know that others are reading and taking something from these often lengthy writings here....It also means a lot to hear that you see a strength of mind...it feels on some days that is all the strength I have.

    Gentle Hugs <3

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  8. Hey sweet Shauna!!

    Honey, the last thing I would ever want for you is to take on any more pain, as I already know what you deal with on an every day basis. Yet I know what you mean, and I say and feel the same way about anyone I know that suffers daily from any illness.

    You know I 'wuv' you, my namesake!

    Gentle Hugs honey and hope things are well with you....

    Shauna <3

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  9. Achelois,

    WOW do you have a plate full of such an interesting and painful disease at the same time....

    I went to your site and joined to follow your blog...it seems as if we have much more in common than just the lousy old pain.

    As ED is an inherited disorder, do you have a family member that also suffers, (or suffered) from it? Quite a rare thing that you are dealing with, and I am glad that 'we' that have daily pain can connect with each other much easier now with the net and all the info and blogs, etc.

    I also 'get' the big M that you wrote about in a recent post. I understand the Pre-menstrual condition our bodies go into causing huge flare-ups in both physical and psychological ways. Let's keep in touch girl!! Thank you for your comment and I wish you better sleep!!!

    Gentle Hugs <3

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  10. Ran across your blog from your link on IDA. I just wanted to say thank you for all you are doing to get the word out. I appreciate all that you are doing as I'm sure many others do as well. Take care.
    Melissa

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  11. Dear Melissa,

    Thank you for the nice comment! I have been quite ill and it's been real hard for me to spend a lot (or sometimes ANY) of time on the computer to post as often as I want to.

    IDA is such an awesome site and the community there is the same. Again, we ALL understand each other there!!

    I wish you a day of low/tolerable pain! Gentle Hugs <3

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