Wednesday, September 14, 2011

I'm part of the problem that makes M.S. invisible

Yep its true! This came as a shock to me, please give me a chance to try and explain what I mean. This is what I'm just beginning to understand about myself. When I'm attempting to tell people what M.S. is doing to me, knowing I look fine to them and many don't understand, telling me it's all in my head and their right just not in the way they meant it, people can't relate to what it does, for them it automatic they want to do anything and their bodies do it without them needing to think about it much at all. For them the lines of communication from the brain to the muscles and back again work's and yes I still remember when that was true for me as well. So understanding that's what M.S. does, isn't something they have experienced. Hell they don't even know how they do what they do half time anyway! Because they can't relate, I'm told to do what works for them (sound familiar?) and say, if your tired just take a nap! When I'm suffering from m.s. fatigue it isn't about needing sleep, I feel more like a dead battery what won't take a charge. When I do  take a nap as suggested I'll end up worst off then before! Because my brain and muscles aren't working as a team. Instead less than half of the messages from my brain to my muscles and my muscles telling my brain they're done aren't getting through. Making it feels like my own muscles are trying to pull my joints apart and not one of them is listening to me as I try and fail to get them to work together. That takes stress to a brand new level, as I slowly get my brain and muscles back under control for the most part. Now I'm back to where I was before I took the dam nap in the first place and now I'm running late! Still dealing with the stress from the one who said to take a nap. At this point I do wish they could live in my head for a minute, if they did maybe then they would understand but, more than likely they would come out stark raving mad!

Now this is the invisible part
How many people with m.s. tell anybody about the battles we fight every day just to function? Not many, well I don't anyway. What I do without even thinking, by the way I didn't know I was doing this until two weeks ago. Is to wear colors that  look good on me, I smile, laugh and ask people how they are before they can ask me. The little things I do without thinking like; opening my eye's, relaxing my face muscles. Lets face it there are a few things like bodily dysfunction's that even people who have them don't want to talk about! When people ask how I'm doing? I don't lie, when I say I'm fine because I am, the way I see it is I'm where I want to be with the people I want to be around and that's more important then what m.s. is doing to me every day.

The big one for me is when someone talks about the pain they are going through and tells me it nothing like what you go through every day, I nip that right away. Comparing one pain to another isn't the point, because understanding how pain can and does affect everything around me, doesn't make the pain they feel any less important to them. Knowing how pain can make even breathing seem almost impossible! If I don't want someone to dismiss my pain, how could I dismiss the pain their feeling. Knowing  just maybe I could help them in some way, to ease their suffering letting them know they aren't alone. 

The amount of pain suffered isn't important
It's the compassion learned from dealing with pain
That can make a difference for any one dealing with pain

4 comments:

Travelogue for the Universe said...

It is great not to feel alone. mary

Mary K. Mennenga said...

Mary, Thank you for stoppsing Mary

Kim @ Stuff could... said...

We all seem to have different invisible things with MS....I have several things like panic attacks and I cannot tell anyone. They say oh it is nothing to be nervous about but?? it does not make sense

Mary K. Mennenga said...

I'm sorry but a panic attack is something to be nervous about in my book any way. Sorry I think you may want to talk to a doctor whatever it is finding the cause of them. Panic attacks are very stressful on any one, and having M.S. just makes the effect of it even harder to take. Now if it's a Doctor saying this find a new one soon! Take care,Mary K.