Monday, July 28, 2014
I never want to invalidate anyone else's illness, injury or pain, however temporary or not. That said, I do have this type of response now and then. I never say it aloud and I chastise myself for thinking it at all but I believe it comes from a very normal and human need to be healthy, and jealousy when we know we won't be.
I try to remind myself that there are others who have it far worse than I do and to be grateful for the blessings. However, I also have to give myself permission to have those moments of anger, sorrow and yes, even self-pity. It's okay. It's necessary because we can't be strong all of the time. We need to express everything, even the ugly parts.
I admit, even if it's only here on my blog, that sometimes when people complain of a minor illness, I want to shake them and scream. I want to tell them they have no idea. That they know nothing, Jon Snow. I want to beg them to switch bodies or lives with me, even for one week, so I can remember what it feels like. I'll gladly take their cold or stomach flu for six days if I get just one that's free of pain.
The flip side of that coin is that whomever switched lives with me would have to live mine for a week. I know we may think that we would like those that do not believe or understand our disease to live with it for a week or even a day so they finally have some empathy and compassion. But, I don't think any of us could actually do it - knowingly inflict this upon another person. I couldn't. Not even for one day of freedom.
Fibromyalgia is a war with no end. Winning is only found in getting up each day to fight another battle.
Monday, July 21, 2014
I was in a flare last night while talking with my Love and basically told him exactly what this meme says - sometimes, the pain is so extreme that we have nothing left but to sit still and only blink when we have to.
Thursday, July 17, 2014
This book is incredible - you will laugh until you cry and then you'll just cry. I highly recommend it and cannot wait to see the movie.
As for this quote, it reminds me of something Patrick Swayze said in the movie 'Roadhouse' - "Pain doesn't hurt." Well, I miss you and your work, Patrick but I'm going to have to disagree with that statement. Pain does hurt. Pain makes me cry. And sometimes, the pain is so bad that I laugh hysterically. I don't want to know what the alternative is.
Thursday, July 10, 2014
I've been drawn to sad books for the last few months. If they have anything to do with illness and/or death, or the spirituality of being either of those things, I'm reading it, studying the message and how it might be similar to my life. I kept feeling bad about it though, like I was being morbid or I somehow didn't have the right to think about death because my disease isn't terminal.
I couldn't tell those closest to me that I was reading those books. Nor could I tell them what I was learning and taking from the stories. If I were already judging myself as being morbid, what would they think? Would they think I had some kind of obsessive curiosity or worry that I was suicidal? Would they pity me? How could I tell any of them the truth about why I was reading them and risk making them sad?
Then there came a point where I really wanted to tell them about those books. I wanted to show them quotes and explain how the words made me feel, the ways in which they enlightened & comforted, knowing I wasn't alone in any part of my own story. People have traveled the path of various illness and disease since time began. The unifying moments of the human race are birth, love, loss and death.
I want to tell those I love this one thing, first and foremost - My life has been everything I ever wanted it to be and I have accomplished and been successful at what I chose to be important - my children and being a mother to them. Loving them without conditions or limits, without restraint and judgement, and with every fiber of my being so they would know through the entirety of their own lives that they matter.
I want to tell those that love me that it's normal for anyone who is sick for a long time to think about death. I have not been given an expiration date by a doctor - "six months to a year at most." I'm not counting down the seasons, wondering if this will be my last birthday or Christmas. And yet, when you feel pain every day and your body ever so slowly deteriorating, when you lose your quality of life by inches and missed moments, when you look in the mirror and watch yourself fade, you search for acceptance and peace. But first, you grieve.
Being chronically or terminally ill comes with blessings - the time to plan and to tie up loose ends, time for grief and acceptance, realizing, with a sharper clarity, what's important. Time to do all the things we've been putting off because life got in the way of living. Time to tell our stories and somethings, hoping to be remembered after we are gone. Time to find our God. And, time to say goodbye which is the most important of all.
These are a few of the things I'm learning as I read those books. This is my journey and they are a part of it. I'm meant to read them, to learn and to share it because we grow all the way to the end.