Tag Archives: Fear

MS and my new job update

At least once a day I feel overwhelming excitement, love and connection.magic_schoolbus At least once every other day I feel fear, anxiety, and sadness. And then every three days, I wonder if I can do this. But NEVER have I felt like… I can’t.

The overwhelming love and connection comes from the kids. Some can’t wait to say “what’s YOUR name”. Like Thinn, the little Asian 5th grader who left her seat, going against the flow of kids entering the bus, to sit next to me. We talked only 10 minutes or so but, when she left the bus, she stood on the sidewalk after the others had left; staring at me. I was so happy that I saw this and could wave goodbye as the bus pulled off. Her face said that, that was what she was hoping for, as she bounced up and down to wave back.

The fear and anxiety come from having a hard time walking up the walkway, fearing that people must see me struggling; holding on to the hand rail constantly, even when it’s wet, cold and icy. Losing my balance when I get to the end of the rail, grabbing for the only thing there now…snow. Not very supportive, that stuff. Could have been a disaster but, I caught myself just in the nick of time.

The sadness comes from not being able to do the simple things that I used to take for granted: walking up a hill, in a straight line, or climbing up steps. It’s like losing a friend. Not a BEST friend, but still a friend.

The self talk creeps in now, with the doubt, that voice that wants me to give up. The voice in my head that feels sorry for me, has little faith, and doesn’t think I can do it.

I speak to NO one at work. It’s not safe, so I hear no other voices to shut this one up. I have made a couple of friends at work, and after close examination, do feel I can talk to them…a little. I go to Doc with my negative self talk, and he says, “Sounds to me like you’re trying to talk yourself out of this job.” The voice in my head screams, “No Doc! No! That’s not it at all!” but, I realize he’s right.  That’s the voice in my head… not the real me. The real me has a kind voice, is a cheerleader, and super supportive with 100% faith that this is the RIGHT thing to do. The real me focuses on all of the positive moments that support this idea, this kind voice; like Thinn, on the sidewalk. Every now and then, I talk to Doc for a reality check of what the other voice is trying to do, make me fail. Then, I turn it off.

KindrgrtnBsComments:

Have you gotten back into the workforce after having to be out of it for a while? Were you successful? What roadblocks did you encounter? What did you find helpful in sticking it out?

 

 

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Fear and MS

Monsters, INC

Let’s talk about scary! When I was first diagnosed with MS, I made a conscious decision to stay far away from all things MS. It all scared the begeebee’s out of me; I wouldn’t even read the National MS Society magazine because of those scary aids and pictures in the back for mobility assistance devices. To think that one day I might need one of those was too much for me. I’m ashamed of the fact that I was even afraid of people with MS, although I didn’t know any. I couldn’t face seeing what I knew might happen to me.

For the first six years or so, I didn’t get the magazine. One day I was in my husband’s home office and I went in a drawer and found not porn magazines… but 6 years worth of National MS Society magazines! He had been getting the mail every day, as a part of his routine, so I just never noticed. In that time he researched everything he could about MS, my symptoms, and my drugs.

The most important part for me is that he never let me know…ever. Not one statistic or sad story…nothing. I think he saw something in spite of my upbeat, optimistic, cheerleader self, that was dark, and it came with my diagnosis. It was fear. Over the next few years, I took it in, in very small pieces. I eventually found a very good doctor whom I could talk to, and I trusted. It was always about just me and what was going on right in that moment. Never about what could happen.

But now, I want to know EVERYTHING, so bring it on! I have a better understanding why MS is called the “snowflake” disease. Like snowflakes, no one person with MS, is exactly like another. I also realized that not everything I read was going to happen to me.

My practical advice to you is:

1)      Be your own advocate. Learn all that you can about this disease; be sure, though, to keep it just to what is happening with you in this moment. You can eat an elephant, only one bite at a time.

2)      Find good doctors; shop around. Communicate well with them and insist that they do the same with you. You will create a “team” and you are the Quarterback.

3)      Stay away from the internet, except my blog of course (LOL). As I come across blogs to suggest, I will post them. There IS good information out here, but limit your surfing. Carefully choose a few blogs to follow that have the tempo that suites you and ONLY do research using legitimate science and health sites.

4)      You will need help; you will need support. Get it – a spouse, a friend, a mother, a sibling, even a child. You may need to say “I need you. Please stay informed about this disease for me. Or with me”. Explain that it is overwhelming and frightening. Explain the “snowflake theory” as well. For goodness sake, whatever you do, don’t get someone as freaked out as you.

5)      A Clinical Psychologist has also always been a part of my team. Again, shop around.

6)      Last but not least…ask me! I will do my best to help you with whatever information and support that I can.

7)      Oh…and breathe!

COMMENTS and THOUGHTS:What was your experience when first diagnosed? Will you share your strategies to overcome the fear?

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Part 2: MS and Genetics

Part 2: MS and Genetics
“A Conversation with Myself”
It’s crumbling, right here, right now, right before my eyes. This wall of denial I’ve taken 20 years to build to protect us, just like that… gone. She sat there, my baby, vulnerable and frightened, looking at me.
In that moment I was free from all fear. It was liberating, as though fear had been a monkey on my back and now it was gone. I sat up taller, chest further out…why? I knew instantly that from hiding behind my denial…not facing the fear; I was left weakened and controlled by it. Now, no longer able to use denial as a cover, I became empowered, and yes… my baby was watching me. So FUCK YOU MS! Yeah you’re bigger than me and you present LOTS of challenges, but with each one you give me another opportunity to show my baby strength, courage, dignity, grace and humility. Just a few of the things my mother taught me.
So, no MS, not fuck you…thank you (in a twisted sort of way).

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Filed under MS and Family, MS and Genetics