Tag Archives: Disability

MS: “Denial or Determination?”

I’ve shrouded myself in denial since I was first diagnosed with Multiple Sclerosis in 1994.denial You know: I can do blah, blah, blah, because I’m really not that sick, and when that didn’t work, sheer determination was used. And I know I am not alone. So how are we MSers to know when this approach of denial or determination no longer works for us? Confession: my brain told me early on that this new job of school bus driver would be too much, but my heart said, “No”. My heart said, “Keep going, look at all of the ways that its been good for you. Everything will be fine. Give it more time, and whatever you do…don’t quit.” Well, at the end of the day, my brain won. My heart was a punk and simply gave in…literally.

Due to my heart “thing,” Takotsubo, described in my (click here) last post…I had to make the decision to resign from my new “almost job” effective immediately. I say “almost” because I was still in the training phase and was JUST about to move on. THEN, I would have been a school bus driver. Truth is, my Takotsubo was a gift. It took the decision regarding whether I could handle this level of stress out of my hands. I’d worked for the last 5 months changing every aspect of my life so that I could re-enter the work force. This, evidently, was not the best portal.

Listening to our bodies is the answer to the first question asked: How are we to know when the strategy of denial/determination is no longer working for us? If you’re not paying attention, or if you don’t trust yourself and your feelings, then maybe your body will yell at you like mine did.

It’s time to get back out there with a new sense of determination. determinationI’ve learned that not giving up means not settling for one or the other. It’s whatever works best at the time. As long as I’m listening to my body, I don’t ever have to decide.

COMMENTS: Have you found yourself reaching a goal due to either of these strategies? Have you found yourself attempting to reach a goal and ultimately having to give up? Did you start with something new? How did you do that?

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Not taking my Ampyra anymore?

Totally Random Thoughts:

I’m considering not taking my Ampyra anymore.Ampyra_and_pills Any thoughts?

I sometimes feel like I would walk better if I just tried harder. Maybe concentrated more. If I were to gain some weight I wouldn’t be so easy to blow off balance.

Your thoughts:

Love, marriage and MS:FBwcB “In sickness and in health”, takes on a whole new meaning.

Your thoughts:

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Filed under MS and Marriage, MS and Oral Medication

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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Filed under Stress Management, Uncategorized

Meet me for Coffee!

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We’ll set a time when you are free and so am I. No distractions please. You get a cup of coffee or tea at your house, and I do the same at mine. Then, whoever initiated the date makes the call, and we talk just like we would if I could see you. It’s really that simple.

If you’re ever limited in your ability to go out, it’s extremely important to keep your connection with others until you can do more. With MS, you can quickly lose touch; you don’t see it happening until it’s too late.  It’s such an unpredictable disease; you expect to be down for just a bit, but you never know. This withdrawal can lead to an unintended isolation, which leads to depression. It happens quickly. Friends call to talk and go places and you decline more and more. Your speech problems, your balance issues, your spasms, your fatigue. You really just don’t feel like going out.  Even talking on the phone can wear you out. It all takes so much energy. Eventually, they call less and you are relieved.

There are those few that hang in there. They don’t call as often, but they will still call, you can count on it. They’re the ones that understand because you’ve explained this to them when you were well, before the relapse. They call to say they don’t want to talk, the call is just to check on you, and to say that they love you.

Things you can do to make this easier:

1)      Most importantly, talk to your close friends when you are well. Explain to them how it feels when you are having a relapse, as best you can. Each relapse is different, but you can explain how things have gone in the past, and that they may be completely different but to please be patient.

2)      Send a blanket email or text to your selected friends.” I’m not answering calls or emails and such right now because my MS is acting up. Please don’t worry; I need to use my energy wisely.  Another note will come when I’m up to it. Meanwhile, keep the party going.”

3)      Answer calls when you can, but keep it simple. You don’t need to explain everything. “I know I haven’t answered your calls in a while but my MS is acting up and I feel crappy. Please call me back in a couple of days, (weeks, months).” Do not wear yourself out.

As soon as you can, do a little more. Start small. Answer more calls and even make some. Have coffee dates more often, and enjoy them.

Me and Ruthie 🙂300666_10200856069915856_673429886_n

COMMENTS: Please share the things that you do to stay connected that don’t require going out. We could use more ideas.

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Filed under Mental Well-Being, MS and Depression, Riding Out a Relapse

Defined by Love…not Disability

I’ve seen a blind woman, here where I live, with her young teenage daughter. This particular day, they were getting off of a public bus. The mother got off first, into a crowd of people waiting to get on. Before I saw her…I saw her red tipped walking stick. When they got off the bus, I was staring. Her daughter made immediate eye contact with me. I have never felt so shamed by a child’s “look”. I wanted to make my way over to her and explain; my stare was one of admiration! She reminded me of my own daughter, and how she helps me.

To listen to their story on NPR Storycorp, click the link below:

http://www.npr.org/2013/02/08/171382156/a-life-defined-not-by-disability-but-love

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