Here I am, again… seeking solace in my lap top computer. In truth, the ticking of keys being hit and the faint hush of the blinking cursor as I type makes me feel better. Which I’m thankful for… extremely thankful for. To have some outlet.
It didn’t start at the beginning, but I feel I have to go there. James and I just returned from a wonderful, relaxing trip to the beach. My parents, my sister and her husband, along with each of our dogs all met at an ocean-front beach house in North Carolina. The trip was wonderful. Just to be able to see James and spend hours on end with him… which is rare during the week because we’re on completely different schedules. And just to sleep. That’s what I wanted for James… relaxation and sleep.
Anyway, we returned yesterday. Home sweet home. We went to sleep last night in paradise… You know the feeling of returning to your bed… after getting used to a sub par mattress elsewhere? Well, we missed our mattress, our sheets, our pillows. Our bed… and we slept like we were paid a million dollars each to get some shut-eye last night.
I woke up this morning and everything was fine. I was happy. James was happy. In fact, I was so happy, I curled up on the sofa next to James for a few minutes right after I woke up… again, just to relax. I laid there maybe 15 minutes…? Maybe less… or more… It’s hard to say. But when I got up, something was odd. I had this pain in my neck. On the left side. I told James, “I cannot move my head to the left. It hurts. I cannot move it at all that way.” We determined it must be a pinched nerve. “I get them all the time,” James told me. And it’s true. In fact, he just got over a painful one that lasted two weeks. I asked, “Do people ever call out sick for a pinched nerve? This really hurts — I don’t think I’ve had a pinched nerve before” and he kind of giggled at me. “No, they don’t call out sick from work of a pinched nerve.” He said it’s painful, but it gets better in a few hours… a few days… a few weeks. It gets better.
I decided then and there to tough up. I took multiple Aleves (actually over the recommended dose), a hot shower and held frozen veggie bags to my neck. I tried to move on — not focus on the pain. I bought books at the bookstore. We got ice cream and visited his dad. We came home and watched TV, then went out to dinner with his parents. All the while the pain kept increasing, growing like a fire through my neck. By the time dinner was over my once-miserable self turned unbearable. The pain had coursed through the entire left side of my neck… to my ear (which is honest to God on fire now)… down to my shoulder-blade and underneath my shoulder bone… and all the way back up to my left collarbone. It’s crippling.
So here I am… sitting on my coach alone. The pain keeps traveling. Every few hours, I’ll notice another spot nearby that ignites in flames. Right now, it’s my left ear that’s burning mixed with my left collar-bone and the left-side of my neck, all sending stabbing heat waves of pain through my body. It seems I cannot hold my head in any position to escape the pain. Even if I think I found one position that decreases the burn… after about 30 seconds, that familiar heat grows until I have to move and feel the searing heat again.
That’s when it dawned on me. I don’t think this is a pinched nerve. I think this is an MS attack.
How could I have overlooked this? James says pinched nerves are bad, but this is nowhere near what I would describe as “bad”… and truly, I can handle a normal dose of pain. The pain is spreading and moving at the same time… and it’s a hot-type of pain… not the slight uncomfortable stabbing crick-in-the-neck type of discomfort. It hurts when I don’t move too. That’s what gave it away for me. I remembered James saying, “If you lay still, it will feel better”… but despite the fact that I cannot lay, it doesn’t feel better when I stop moving… or when I move. It hurts. 100% of the time. Plus suddenly remembering what those with MS have said about the disease: “It’s painful. It really hurts.”
Taking to the internet, I found a link: WebMD had a feature about Treating Types of Multiple Sclerosis Pain. They say MS causes “all kinds of trouble” and pain. According to the site, of 7,000 MS patients, 70% of them had suffered some kind of pain… and 50% were currently experiencing pain when the survey was taken. I always wondered, “What pain?” when those with MS or those who know someone with MS used that four-letter word. I almost didn’t believe.
The site also says people describe the pain as “like a burning pain, and sometimes as a very intense sensation of pressure.” Doctors say this is because the nerves in those with MS are too active and they send pain signals “with no good reason”… where as regular people have pain signals as a natural defense mechanism when they are hurt. There, the nerves send messages to your brain saying your hurt so you stop action. With MS though, the nerves are “firing a pain message when they shouldn’t be.”
Here’s what I found more interesting. According to WebMD, there are types of common MS pain:
Acute MS Pain — Can come and leave suddenly. The pain is intense, but brief. It’s described as “burning, tingling, shooting or stabbing.
Lhermitte’s Sign — “A brief, stabbing electric-shock-like sensation that runs from the back of the head down the spine.” Bingo. That’s it. Minus the spine. In fact, I couldn’t describe the pain any better if I tried.
So that’s why I’m here. Once again I find myself in this scary, familiar setting which is odd because familiarity should provide some comfort. And maybe that’s why I’m scared. I thought I had figured out my MS. I’m positive I know the signs of optic neuritis — Everything gets lighter in color, as if you’ve looked into the bright sun for took long. And I know when those optic neuritis signs will kick in: When I one, get too hot (despite what temperature it may be around me) or two, if I am facing the sun for too long (again, despite what temperature it is). I was learning and forming this mental notepad, filled with quick file-away notes. Or so I thought. But in the midst of no attacks, I forgot. I forgot that I have a disease. I forgot that MS doesn’t just cause optic neuritis. I forgot that there’s long list of episodes I could have. I guess I chose not to remember.
Monday was supposed to be my day back from the beach. It was supposed to be a day I was dreading… ‘O back to the grind, back to work. Away from paradise. That’s what it was supposed to be. But now I badly want that Monday to come. I am scared because my vision of Monday now doesn’t seem to have any amount of ‘normal.’ If the pain doesn’t go away by tomorrow morning, I’m going to have to call out sick… and I’m going to have to spend hours in doctors’ offices… waiting for a “wait and see” diagnosis. Now I feel guilty I scoffed at Monday.
This is where I once again am asking something from you. I’ve noticed over the past months that I have a few additional readers. I have this map of countries where these readers are located. It says these people who read my blog live here in America, Germany, but also Australia, Egypt and more. I’ve never been to most of the countries it highlights… and yet, I’m going to openly ask a favor to those that are there. Those reading: Do you have MS? Know of someone with MS? Does this pain sound like it’s MS… or am I just scaring myself by self-diagnosing on the internet when it’s really a simple pinched nerve? Can you help? Can you give me any bit of information? What is “pain” when going hand-in-hand with MS? Help me. Please.
It’s after 10 p.m. and I’m supposed to work tomorrow. Until then, my night is going to be consistent of research. For better or for worse. But I feel like knowledge is power. If I self-diagnose wrong, fine! I’d be happy to write a follow-up post saying, “Hey. I got it wrong. Pinched nerve after all! *Cheers*” But I’m scared that what I’m going to end up doing is filling out another piece of paper in my mental notebook.
It’s strange because sometimes when I talk about MS, I feel furthest from people. I don’t really want to open up… and I pick and choose what I say. I don’t want people to know how it affects me or that I am scared. That’s personal. But it’s strange because I may be in a room full of family members or co-workers… and I feel alone when talking about my MS. Yet, here I am sitting in my living room — by myself — and the light of my computer screen makes me feel like I have someone — something here with me. I’m not judged. I’m not told I’m wrong or right… or how I should act or what to think. I’m not told anything. I’m just given a space… a space to pour my heart out, a space that’s clear for my tears to fall, a space without pity, a space to research, a space to write. A space to think. And I believe when one can delve into their own thoughts — be allowed to fully think — that person is never alone. …Or at least, they don’t realize they are. And there’s something incredibly comforting in not realizing.