I wanted to apologize for not posting much in the past few days… I have been struggling with severe neuralgia, or nerve pain. Most days I wake up with nerve pain in my hands, legs and feet, but as the day goes on, I get a grip on it, and it is nothing more than a slight intrusion into my daily life. The past few days it has decided to stick around, and pick on me a little…..
I was diagnosed with “Fibrositis Syndrome” at a very young age. I think I might have been 13 or 14, but the exact date escapes me. Fibrositis IS Fibromyalgia, but they used a different word back then…. I had no idea what this meant for my life at the time. I was sent to a specialist because of “joint” pain, but over the years that pain has ended up spreading throughout my entire body. Among other illnesses, Fibromyalgia has had a hold on my life for a very long time…. 22 years in fact… but the last 4 have been the hardest.
I haven’t always suffered from nerve pain, it is a symptom I have only been dealing with for a couple of years. It is a NASTY symptom though. It causes a lot of anxiety for me, and some sadness as well. It is hard to stay positive and not get angry at times when the simplest of things cause pain….putting on clothes, walking, taking a bath…. The thing that bothers me the MOST is when my hands hurt so badly I cannot hold hands with my honey… It is just about my most favorite thing in the world to do…. and at times it can be too painful.
We deal with the loss of so many things to our illnesses… I have lost many things to my illness…. And for the most part, I have come to terms with that. I don’t necessarily want to use the word “acceptance” because I don’t believe that acceptance is always an event or destination… I believe at times it is a life-long journey… I am always finding different levels of resignation and peace along my journey…. that changes daily. And some days I feel like I am back to the place where I was at the beginning of all of this… But today isn’t one of those days…. thank God!
Last night I was really struggling with this nerve pain, and no matter what I did, I just couldn’t get a good handle on it. It made me sad, because it was “date night”, and I wanted nothing more than to cuddle up with my honey, hold hands, and watch a movie…. Instead I spent most of the night pressed into the opposite side of the couch, making sure our bodies didn’t meet. The clothes I had on felt like they were burning into my skin, so I was trying to protect myself from further pain.
Now let me say this: I have the most amazing man in my life, and he truly understands this side of me. I know he doesn’t take offense when I need my space, and he is constantly checking in with me to see what my pain level is, and how I am holding up. I am SO thankful for him!! But I also know that he feels powerless some days, and it must make him sad to see me suffer. He does get MAD at my pain… he does hate it when my pain picks on me! But unlike a bully who he can defend me from, his hands are often tied when it comes to fighting off this enemy. He can’t stand toe to toe with what hurts me and protect me from it… he has to find his own acceptance…. and we have to find OUR way of dealing with it together.
We watched a movie, and crawled into bed…. I was still fuming over the simple notion that holding hands with my honey wasn’t going to happen….. I was laying on the bed, looking up at the ceiling, and was stewing in my own displeasure because I felt like the pain took something away from me….
and then my honey rolled over, looked at me, and said…
“I love you more than anything….”
and in that moment I realized that we were in fact holding hands all night… even if our bodies weren’t touching…..
Modification doesn’t equal loss necessarily…. and my pain doesn’t change whats in my heart.
The nerve pain is still raging today… and it is wiping me out. I am feeling really exhausted.
But I am thankful for the lessons learned….
We don’t have to be holding each others hands to hold each others hearts….