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….
I am sorry to hear that you are going through such a hard time Jolene. I am so glad though that you have your honey to help you through these difficult days. It sounds like you two have a really beautiful relationship. I hope your pain starts to ease up soon.
Thanks Nic! I can normally handle nerve pain, but when it is layered with muscular pain, joint pain, ligament pain… LOL… yikes!
I’ll be okay though, I am a trooper
I still feel like I am the luckiest girl in the world though some days.. even with all of it and the other stresses in life. I get to share it all with my best friend! I am sure you know how THAT feels!
Happy birthday again, birthday girl!! Shouldn’t you be OFF the computer and eating cake, or celebrating instead?!?
Thank you for such an expressive post. Pain can sunder love so it’s wonderful that you have someone who understands your pain, and knows that while it is a daily part of your life, it isn’t all you are. You are a pain survivor!
Thanks for that! I wasn’t always in this position…. I have been divorced. So I have really seen this from both sides…
and we constantly work on ourselves to be healthy, so our relationship is as healthy as it can be.
I am really blessed to have my best friend walk through this journey with me… and that is something that neither of us take for granted. We have amazing communication between the two of us, and mutual respect and admiration, so that doesn’t hurt
I recently read something that might help you.
“Resignation is passive and acceptance is active.” In other words when we accept our situations, we are not resigned to it, not giving in or doing nothing. We accept it and are actively engaged in going forward. We are just finding better ways to do that so we can co-exist as best as possible with these illnesses.
You never have to feel bad for acceptance because that means you are still fighting.
I am so sorry you have had so much nerve pain. I just started getting that in my hands and feet – every once in awhile, all over my body. I know how much that hurts!
I am so glad you have such a wonderful man. It takes a man of great compassion and characters to stand by a woman who is enduring such a difficult journey! Your man rocks!
I am praying for you and thinking of you!
I’m sending a heart-to-heart hug so it won’t hurt!
I love that!!! That is a total light-bulb moment! “Resignation is passive and acceptance is active”… I think that is fantastic!
My honey is both a man of great compassion and character… he has an amazing amount of integrity as well. I have NEVER been in the situation where I feel like I have to justify my pain to him… actually there are times that I think he understands it better than I do!
I am sending gentle hugs right back to you today! You mean a lot to me Dominique, thank you for being such a good friend.
I’m so sorry for your nerve pain and all chronic pain. I know what that feels like. I am thrilled for you and your lovely man and you deserve him as much as he deserves you. you were meant to be together, even if holding hands is painful. You are holding hands in your hearts!! regards, Laurie
Thanks hon… I am very lucky that I have such a wonderful man in my life. He is my best friend. We have both been through a lot in our lives in bad relationships and both of us had unsuccessful marriages – so we sure value and appreciate what we have found in each other. We have actually known each other for 10 years, and had a close connection as friends – but we lost contact 5 years ago. When we met up again 2 years ago, it was an instant and powerful connection. I knew straight away I wanted to spend my life with him! Funny how things work out….
I am struggling again today, so it is going to be a quiet one… I am snuggled in bed with a coffee and the laptop
I read your whole blog last night when I couldn’t sleep… You are a BEAUTIFUL writer… and I felt so many connections to you! I am so sorry that you lost your Dad. I can relate to the grief…. I lost my brother who was 10 years older than me, and a “dad” of sorts to me as well.
If you ever need to chat, you know where to find me.
Hugs girl!
Jolene