I really do not know where I am going with this post but I’ll start by saying my husband asked me to “explain” myself … he had a few questions. Our conversation went very much like this;
“How do you deal with me when you are always in pain?”
“Well, I bitch at you!”
“No, you don’t and I’m serious. How do you manage to deal with me, the house, the blogging, and all the people who ask you for help? My God, you wrote a book?!?!”
“Yes, pulled that off didn’t I?” (laughing)
“I’m serious, I would be devastated if I was in as much pain as you are, it would crush me.”
“What makes you think I’m not crushed?”
“Are you? I don’t see that side of you. I almost lost you twice, (idiopathic pancreatitis) I just want to know how you do what you do?”
“Because I love you more than I did the day I married you.”
This conversation started the proverbial ball rolling. I was not in the best mood that day and the last thing I wanted to do was talk about my chronic pain self so over the course of a few days of blogging and thinking about how I do things, and why, I started to tell my sweet husband my thoughts about what drives me.
First, I am in pain every day. Not the kind that makes you scream and cry, the kind that feels like you have the flu – just not the throwing up part or burning fever. Body aches and fatigue. Every day. This is a fact so why say this is how I feel every day? I just pretend I do not feel this way. Why should I take it out on him? It is not his fault. Besides, he is a ‘fixer’ and he can’t ‘fix’ the chronic pain. It can’t be done!
What am I like to come home to? I think of this often. (Probably from watching one too many Dr. Phil shows.) Throw in a few relationships in the past where I knew what it was like going home to my dreaded mate and there is the perfect storm! I want him to WANT to come home. I want him to know that I appreciate the work he does, I appreciate the care he gives me and I love spending time with him. (And I really do!) I let him know every day that I am happy to be with him and so proud of him. I am thankful for my husband and I want him to feel it and know whatever happens ‘out there’, I am his safe spot to land.
I have learned the art of saying “sorry” when appropriate. And he has learned the art of accepting my apologies. I accept his apologies as well, he’s not a saint! Chronic illness is a kill-joy. It is a sneaky little monster that will steal good moments from you any chance it gets. Somedays, it wins, but most days, I win. On the days I don’t win, I let him know I’m having an FM day. (Code for stay as far away as possible from me because I won’t be responsible for my actions!)
From 2012 to 2015, I went through a period of about 3 years of having little to no memories let alone a single independent thought. I had to re-learn sentence structure, spacial recognition, basic mind work. I had 7 surgeries during that period as my pancreas decided to quit working whenever it decided to. I had developed a biliary disease that was thought to be the culprit but the jury will remain out as everyone has an opinion but no one has the answer. My surgeon said I would pay from the amount of anesthesia I underwent due to these surgeries and I did! Memory loss. I wasn’t expected to survive but I did so what next? I had to deal with the outcome. Coloring books, zentangles, crossword puzzles and then a blog and finally a book! Mind work.
(My husband never wavered. He was my rock. He was by my side throughout that terrible time. He remained strong and positive and never let on how frightened he was about the possibility of me not recovering. I love him more than the day we were married, too.)
To wrap up this whole little discussion as to why I do what I do, let’s talk about the people who reach out to me for help. I have acquired a lot of knowledge throughout my life. A college education in applied sciences, real-life counseling experience, learning about my chronic disease and others’, blogging and authoring a book about people’s chronic illness journeys. I love helping people! It is good for my heart and I look at each and every person who reaches out and asks for my help as an opportunity to assist them to see the amazing potential they possess! We get to define it together. I want to be that one person that takes the time to listen to them, really listen. I do not have all the answers but I will help you discover your own answers, those that fit you. By helping others when I couldn’t even help myself a few years back is an amazing gift I will never take lightly. It gives me purpose and fulfills my promise to make this stage of my life meaningful.
This is what I do, and why!
~ For you Jeff, my love.