During this time, a friend of mine was going through her own battle with a relatively unknown medical condition that was causing her excessive pain. She was unable to function in her daily life as her pain levels required high doses of pain. Her doctor was unable to help her. They were exhausting every treatment available and she was almost without hope for help.
I found solace in conversations with her. She seemed to understand my agony. She seemed to connect to what I was feeling and she understood the battles I was having with some of my darkest demons.
I was overwhelmed and unsure what my future held, and I couldn't imagine that my husband would feel any better about the whole thing. The more I focused on it the worse the nagging voice in my head became...the bigger the demon was...the more I worried.
Below is an email exchange that I shared with my friend. Some of the more delicate thoughts have been removed to protect her, Her thoughts are noted in black and responses are bold in purple.
An email dated August 2007:
Dear Autumn,
I know what you mean. Sometimes it's just too difficult to think of doing anything. I have to make myself get up in the morning because if I don't, I'm afraid I will never be able to get up; if that makes sense. - That TOTALLY makes sense to me. There are some days that I just can't so anything despite wanting to...and then I just feel guilty for not doing anything and that makes me feel worse. It is a never-ending cycle.
I'm not certain there is going to be an answer. A colleague of mine once told me that she didn't believe they would find an answer to my conditions in my lifetime. I didn't want to believe her. Now, I'm beginning to think she was correct, and that makes me very sad. I'm sorry that someone was so blunt and hurtful with her statements. I know that sometimes things are bleak...that is the nature of the game when you are facing something so painful and relativley unknown to the Doctors....but that doesn't mean that we don't need our friends and companions to be positive for us when we can't. When I was reading your thouhts about how sad you are , I was wisked back to the flood of emotion and awful feelings that I had this past June when my Dr. told me that it wasn't going to "get better" and that things weren't every going to "go back to mornal." I had be clinging to those words for so long. I kept pushing thru all the tests and dr visits and pain and depression knowing that if I could just make it thru this one more thing, that "better" and normal were just on the other side. I cried and felt my heart break when they said that it wasn't going to go away or be better and that "this" was my life and that I would always deal with this. I was devistated. For about a week all I did was cry. I was angry..."WHY ME? What am I being punished for?" I was scared..."What if Doug gives up and just leaves...He has put up with so much, how much more is it fair to ask him to endure? And what will I do without him?" I was pissed off - "Why can't you fix this? Why can't they figure out what went wrong? It was ok, and then it wasn't and they just can't figure out why? What the HELL?" I had a hard time getting my head around all that and it was even harder to figure out where my existance fit into all this MESS...and quite honestly, I'm still not sure. BUT...I'm learning that there is no point in dwelling in what was...I have to go forward. AND take each day...one at time...realize that I'm not capable of being strong all the time and letting go. Who knew that relaxing and letting go was so difficult!?!? As for thinking that things are hopeless and that there won't be a cure or a medical development in our lifetimes that will help us....you can never think that...you have to continue to believe that your experience has a meaning and a purpose. I have come to believe that maybe I am supposed to help create awareness. Maybe sharing my experience will help others not suffer as I do. Maybe, if it is only one person...maybe it will make a difference and that is the hope that I carry...that hope makes me go on.
The physical therapist I saw in Fresno said that she just didn't think her treatments (I've had six of them) were not going to be of much help. She just kept shaking her head, like she just didn't know what to do. After the sixth treatment, which caused such a huge flare up of pain for several days, I didn't go back. I just can't live with that much pain because I don't take any meds that help pain. I can't even describe it when it's that bad. I can't imagine what you go thru...it makes me just cringe to think about it. You are amazingly strong!
So, as the saying goes, "no rest for the weary." I'm sorry that you feel "weary." I hope you know that we wish you peace and calm and that we send thoughts of comfort to you all the time!
And, as the title to the late Gildna Radner's book said: "It's always something."
I wish you many blessings, healing of your health, and peace of mind. Please take care. Take care of yourself too! I'm always thinking of you and wishing you a pain free day!
I know what you mean. Sometimes it's just too difficult to think of doing anything. I have to make myself get up in the morning because if I don't, I'm afraid I will never be able to get up; if that makes sense. - That TOTALLY makes sense to me. There are some days that I just can't so anything despite wanting to...and then I just feel guilty for not doing anything and that makes me feel worse. It is a never-ending cycle.
I'm not certain there is going to be an answer. A colleague of mine once told me that she didn't believe they would find an answer to my conditions in my lifetime. I didn't want to believe her. Now, I'm beginning to think she was correct, and that makes me very sad. I'm sorry that someone was so blunt and hurtful with her statements. I know that sometimes things are bleak...that is the nature of the game when you are facing something so painful and relativley unknown to the Doctors....but that doesn't mean that we don't need our friends and companions to be positive for us when we can't. When I was reading your thouhts about how sad you are , I was wisked back to the flood of emotion and awful feelings that I had this past June when my Dr. told me that it wasn't going to "get better" and that things weren't every going to "go back to mornal." I had be clinging to those words for so long. I kept pushing thru all the tests and dr visits and pain and depression knowing that if I could just make it thru this one more thing, that "better" and normal were just on the other side. I cried and felt my heart break when they said that it wasn't going to go away or be better and that "this" was my life and that I would always deal with this. I was devistated. For about a week all I did was cry. I was angry..."WHY ME? What am I being punished for?" I was scared..."What if Doug gives up and just leaves...He has put up with so much, how much more is it fair to ask him to endure? And what will I do without him?" I was pissed off - "Why can't you fix this? Why can't they figure out what went wrong? It was ok, and then it wasn't and they just can't figure out why? What the HELL?" I had a hard time getting my head around all that and it was even harder to figure out where my existance fit into all this MESS...and quite honestly, I'm still not sure. BUT...I'm learning that there is no point in dwelling in what was...I have to go forward. AND take each day...one at time...realize that I'm not capable of being strong all the time and letting go. Who knew that relaxing and letting go was so difficult!?!? As for thinking that things are hopeless and that there won't be a cure or a medical development in our lifetimes that will help us....you can never think that...you have to continue to believe that your experience has a meaning and a purpose. I have come to believe that maybe I am supposed to help create awareness. Maybe sharing my experience will help others not suffer as I do. Maybe, if it is only one person...maybe it will make a difference and that is the hope that I carry...that hope makes me go on.
The physical therapist I saw in Fresno said that she just didn't think her treatments (I've had six of them) were not going to be of much help. She just kept shaking her head, like she just didn't know what to do. After the sixth treatment, which caused such a huge flare up of pain for several days, I didn't go back. I just can't live with that much pain because I don't take any meds that help pain. I can't even describe it when it's that bad. I can't imagine what you go thru...it makes me just cringe to think about it. You are amazingly strong!
So, as the saying goes, "no rest for the weary." I'm sorry that you feel "weary." I hope you know that we wish you peace and calm and that we send thoughts of comfort to you all the time!
And, as the title to the late Gildna Radner's book said: "It's always something."
I wish you many blessings, healing of your health, and peace of mind. Please take care. Take care of yourself too! I'm always thinking of you and wishing you a pain free day!
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