By Suzanne Stewart.
This is not just a story about me, but a story that many pain warriors live through on a daily basis. I know because I talk to many of them often. Much of this is “our story”. …..I awaken each day; the first thing that I do is cry inside of my head. My body lay still too long. Four hours is too long! I feel pain and don’t want to get up, or move because I know it will hurt. I’m so tired of the pain. I lay there and contemplate rising to my feet. I hear my husband call my name. He always says “Hello my Love, Good Morning! Time to rise and shine!” He tells our Kitty, Luna, to come and get me. She always listens to him and she enters our bedroom and meows for me to get on my feet. Still lying there, I think about the day ahead and wonder if it will be a busy day? Will it be one in which I have to do a few things? Or will it be a day that I can be a bit quiet?
After 40 minutes has passed from the time I took my medication, I attempt to get up. First I sit up and I feel the pain in my back. The Degenerative disc disease, Scoliosis, Spondylitis and multiple herniated and bulging discs, make it almost an impossible feat. The medication does help. It takes the pain down from a 9 to about a 5; and I finally get up. But then there’s the stairs to tackle. I hold onto the rail and then I lean on the wall. I fumble my way down the stairs, as my cat scampers past me, ready for her cuddles on my way to the kitchen. First, I sit on the ottoman and pet her for a few moments and then it’s time for breakfast. My husband has already made the tea and has my toast ready to go.
He goes to work and I go to my chair, my recliner. In my spot, there is a pillow and a blanket and a settle in for a look on the computer. What fantastic things have happened overnight on Facebook, Twitter and Instagram? I answer a few questions, maybe I help a few people in my support groups? People always volunteer to help me with my groups because they are becoming large for one person to handle on a daily basis. People mean well, but they are also in pain and have much going on in their lives. Eventually they stop helping and I’m alone again. I don’t want to give up, because some people just need someone to listen, anyone. I like being that person. I want to help and do something of value with my life.
Maybe after awhile at the computer, I will either write a blog post, an article; or maybe I’ll sign a song that day. I love the beauty of ASL and the way the emotions come out of my body, hands and face. I can feel something other than pain. Until I’m finished; and then the pain is worse. I have to rest and take more medications. My husband comes home for lunch because he says that he likes to check in on me. We’ve been married for 20 years and he always comes home for lunch. I am one lucky lady to have such a knight in shining armor at my side. He never complains about doing so much. He cleans, cooks and does the laundry; after mowing the lawn and fixing whatever needs repaired in the house. Still, he never complains.
In the afternoon, I may visit my granddaughters and my daughter who live only a few blocks away. I’m still able to drive for “personal errands” and for about 10 minutes at a time. If I visit them, I get lots of hugs and kisses and more love and life than you can even imagine. They are rays of sunshine in a world of pain. They don’t understand that I am in pain and that’s a good thing for now. I like to light up their faces and give them love and receive that same love in return. My daughter and I may do a couple of errands or have a coffee and chat. It seems like a nice day, right? It’s true, it’s the nicest day you could imagine. Then I come home and I sink into my recliner and sometimes my cat will come and sit with me. Her love is unconditional and she seems to know when I’m in more pain than usual. She gives me comfort and love, unconditional love. By that time it is 3:30 in the afternoon. It’s been a full day and my pain has risen from the activities. I can’t do anything else. I don’t have the energy to make dinner anymore. The fatigue is deep and lasts for long periods of time. I rest and sometimes I nod off in my chair. The cat jumps off of the chair and the back door opens. My hero is home! The love of my life and my forever soul-mate comes home from another day at his job as a teacher. We muster up something to eat for dinner. Mostly, for him; because eating has become something difficult now. It’s not fun or anything I look forward to anymore. I have IBS, S.I.B.O., and Gastroparesis. There’s so much I’m incapable of eating now. If I just throw caution to the wind, and eat to be social or “fun”; I suffer more. There’s the nausea, constant nausea and burning whether it is high or low in my stomach; it’s awful either way. Then if I eat just a tiny bit too much, I will be sick for hours afterwards. This is something that others don’t see or understand. My husband sees and watches it from the other side. Then there are the others who I “talk to” on the other side of this computer. Many of them truly do understand.
Then, my friends; it is evening time. The sun goes down and we watch some Television together and maybe read or “play” on the internet for awhile. All too soon, it is 10:30 pm and my husband goes up to bed. He. has to work in the morning. He kisses me goodnight and tells me not to stay up too long. I tell him that I will come to bed as soon as I feel like I’m able to sleep. Time goes by and it’s one in the morning, then 2:00 AM and 3:00 AM. I start to nod off as I’m messaging the other “night owls” who are my fellow pain warriors. They are with me at night, because they too cannot sleep either. We try to give each other support and the strength to persevere. Finally, the sparks of chatter start to diminish online. I too, feel like I truly want sleep to come and save me from my body and the pain that is within. Much of the pain is physical, but there is no lack of mental anguish.
I come from a family that doesn’t know or care that I exist. There’s a long history that I don’t wish to write about here. But I didn’t know how to feel love until I met my soul-mate, Craig. We’ve been married 20+ years now. I thank God for him every day because nobody has ever truly loved me until I met him. Some people ask me why I always go back to my family for more abuse and more pain? I guess because there’s a feeling of “aloneness”. We don’t have any extended family. We haven’t had that kind of family help or caring. There is physical pain and there are other kinds of pain. Some of these exacerbate the others. We just have to surround ourselves with those who want us in their lives. Those who want to give and receive; or share love with us.
When my head finally hits the pillow at night, I lie down and listen to my husband’s breathing. So glad to hear those sounds of life and know that this person beside me has truly shown me what real love is all about. I never knew if I would have that, some people never get to know it. People who are “damaged” like me, have a hard time very often knowing the difference between real love and hurtful kinds of “twisted” love. I’m fortunate to know this man and lucky to have his love and to have him to love. I try to let the sleep come to me. Relax, sigh and listen to the breath sounds and the sound of the cat purring next to me. This is my real “medicine” in life. These sounds, this love and the love of my children and grandchildren are what makes me happy. I try to remember these thoughts as I fitfully sleep for a few hours, only to wake up to the “fear” of getting up on my feet once more again tomorrow.
Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor. She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S.Pain Foundation.
For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth (Suzydukettes.wordpress.com).