The pain in my neck

Kids can be a pain in the neck, as the saying goes. One thing that never really impacted me prior to this exacerbation was pain. 
I have lots of different kinds of pain. The pain in my legs, hands and neck are the areas that most impact my life. 

In the last couple of months, as the exacerbation wears on, the pain is getting more pronounced.

The feeling of pins and needles is a bearable part of my life; the pain that sneaks in tends to impact me more.

Here are some things I would like to teach people about my MS

  • Just because I look fine, does not mean I'm not struggling with pain and fatigue.
  • Just because I am not using my cane does not mean I am not a fall risk.

I am so tired. Tired of pretending I'm fine. It seems that the more I battle, the harder I fake it for my kid the harder it is.

I do not feel better. I am learning to cope better. There is a huge difference. 

Please don't tell me to get well soon, like I have a cold. Even if I do, based on my disease trajectory even if my treatment works there is a good chance than I will slowly progress. 


 I was out and a very nice couple said, "I hope you get better soon."

I responded, "For me, a better sentiment is 'I hope you don't get much worse.' Chronic illness is like that." It may sound rude when you read it, but I had a smile on my face and I think that softened the blow.  But I have stopped caring if I make other people uncomfortable. 

Please don't assume because you saw me on a good day I am suddenly cured of a chronic illness. It makes you look uninformed and me feel like an asshole when I want to roll my eyes at you.

Don't make fun of disability with something sitting at the table with a disability. Take the word “retard” out of your vinacular.  While you are  at it, think about the slurs you choose to use in jest. 

It might seem like a simple lesson for all parents to teach their children. 

If your child says “What’s wrong with her?” I will not be offended.  I am happy to tell them that I have holes in my brain called lesions.  They make it hard for me to do some things.  You can also respond to your child.  Please don’t shush them.  An answer like, “There are a lot of diseases that make life a little harder for people. I wear glasses, that is a disability, just like that woman needs a cane to walk.”  Children need to understand that disabilities come in a range.  I do not need to report my intermittent need of a cane on my drivers license, but you need to tell the DMV about your eyesight. 

The point is, think before you speak.  Know that looking fine, does not mean healthy.  I work every day to seem fine.  I use so much energy pretending that I am fine. 

Lhermitte's sign (pronounced Ler-meets) is a sudden sensation resembling an electric shock that passes down the back of your neck and into your spine and may then radiate out into your arms and legs. It is usually triggered by bending your head forward towards your chest. The problem can be painful, but it’s not life-threatening. 

It is also known as Lhermitte's syndrome or barber’s chair syndrome. It can be a symptom of multiple sclerosis. When you have MS, your immune system begins to attack the fatty coating, called myelin, that protects your nerves. Without it, scar tissue forms and begins to block the messages traveling in your brain and spinal cord. Lhermitte’s sign is one of the symptoms that happens when those signals don’t move like they should.
Citations: Multiple Sclerosis Trust, UK & Web MD