Monday, October 08, 2012

I have MS, even if you don't think I look sick

If you don't know me or don't see me on a daily basis you might never know. I don't have a rash, lost limb, or really any outer display to tell you I am sick . I don't use a wheel chair, walker, or cane...yet. I may look completely "normal" if you see me in the am, and a hot mess by afternoon. That's just the nature of MS.

I have nerve damage, you can't see it, only I can feel it. I am not stuck up or trying to be offensive by not shaking your hand,hugging you, or accepting the warm friendly rub on my arm. It hurts, like a lot. Imagine having a wire brush ran up and down your arm, or pressed into our hand...that is what I feel with every friendly arm rub, hand shake,or hug.

Every day normal activities that I used to be able to do I can't or am in the process of trying to figure out. When you think I've worn the same pants three days in a row, don't whisper, I probly did. I can't button buttons or zip zippers so I am limited on what clothes I can wear. And yes I did just wear that shirt, it's one of the few that don't make me go crazy after 5 min of wearing it. 

I would rather have an elaborate cooked meal, in fact I LOVE to cook; however I love my fingers too. I am still figuring out how to get back to doing something I love safely. I can and almost have easily cut a finger off and not felt it until it's too late, burn my hands because that pot or cookie sheet didn't feel that hot. So don't judge me when my kids say we had spaghetti or fish sticks six times this month. Orturn up our nose because my 11 and 8 year olds have to help with dinner.

Typing,oh how I love to type! I communicate on facebook, socialize, and network my business. I don't type as fast as I used to, in fact I am down from 100+ wpm with perfect accuracy to 18 wpm with still many mistakes. I still do it because it's an outlet for me.  It may take me longer and I may not always fix my typos but I am ok with that no need to point them out. My handwriting is pretty much illegible so when i say i can't write,I mean it takes me forever and a lot of focus and energy to make it illegible. My husband usually fills out the paper work for me, but clearly he's not sewn to my side. don't take it personally if i ask you to jot something down for me.

MS is an autoimmune disease I was born with it, I didn't do anything to cause it. Nothing really brought it on and nothing will make it go away. I may get better as the myelin  heals, but I might not. i may end up in a wheel chair, with a walker, or a cane..might not. Being fat did not bring this on, and being thinner won't make it go away. I have goals to loose weight, but they are my goals not yours...I don't have to tell you if I don't want to.

if I am any better or my hands go back to normal I will shout it from the roof tops. If you don't want a real answer don't ask me how I am doing. Most days i am ok, not dead is a good thing. There are also days I am extremely depressed and feel like I can't do this. It's normal,  if I ever can't shake the funk I have an amazing Dr who will help me and I won't hesitate to call him.

Things that you can do? I surely do not expect anything from anyone...
  • Any time a meal is brought it takes that much stress out of my day.
  • Cards make me smile.
  • Just being thought of and little random acts of kindness are great.
  • Just be a genuine friend.
  • Sometimes i just need a shoulder to cry on or an ear to vent to.

I try to keep things light and in the end, I guess really just be kind to people because you never know what battles they are facing and could really use an ally.

No comments: