Reality Check

A forum to talk about the general challenges of daily life with MS.

Reality Check

Postby gothicrosie » Wed Jul 14, 2010 5:24 pm

It is easy to get caught up in our plights. Losing the life that we once had. Suffering from pain, fatigue, heat intolerance, intention tremors, difficulty walking any where and up stairs, or any of the long list of other issues we carry around with us.

Sometimes we hold these issues up, like a badge for others to see. Hopeful for understanding and compassion, but sometimes getting nothing back but rudeness and ignorance.

There are many patients like me and still many others who are worse off or even better off than I am.

I, like others have much to be sad about and I often can find myself dwelling on them from time to time. I have been depressed off and on. Every now and then I am faced with my losses and become sad and angry. I cry and wish I could have my old life back.

Some days are harder than others.

Some days the pain is unbearable.

Some days I just can't get up.

But there are many days that I can get up, that are bearable, and that are better than others. I need to count those days too.

I need to remember my family loves me. My son loves me. My husband loves me. My friends love me.

I need to remember I can still walk. I can still see. I can still breathe.

And although I can no longer work, and I can no longer run at the park with my son, or handle an activity longer than 2 hours, I can still do many other things.

For you see, I met my neighbor in the garage today. I have met him before. He is kind but also has my dry wit and we have traded little quips as we pass in the hallways and in the garage from time to time.

But today was different. Today he saw me in the garage and asked, "are you ok?" I was caught. I stumbled in my words. "I am on disability. I have MS." "Oh" he said, "my wife is on disability too. She has Dystonia. She just came back from the hospital a few weeks ago, she had the surgery to implant electrodes in her brain and she had to go back and get the battery pack and computer put in her chest. She also has a Balcofen pump."

I was shocked. He was so understanding of my situation and said, "no one understands do they?" I shook my head, "no they don't" "They think you are lazy" "yes, they do."

We basically agreed working was better than this and his wife and I would give anything to be healthy and working again.

As I walked back to my apartment, I thought, I may have MS but there are many other things I could have and I could be worse off than I am right now.

I am lucky.

I need to remember I can still walk. I can still see. I can still breathe... and I have control over my muscles.

My life is not as bad as I make it out to be in my mind. I need to remember that when I see my neighbor's wife again.

I need to make sure I remember the good things more than the bad.

Life is too short to sweat the small stuff, right? and believe me, my problems are nothing compared to hers.

Nothing at all.
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Postby mattalleng » Sat Sep 11, 2010 1:00 pm

I understand how you feel when it comes to overlooking the good in life and focusing on the negative. I think it's human nature, but here's my advice to you: start a personal journal if you already haven't. My ex-girlfriend always complained that I had a tendency to be pessimistic. She was frustrated that as I slowly showed progress to my first exacerbation I belittled it. During my first exacerbation I journaled. I couldn't see and I couldn't type so instead I spoke into a tape recorder. anytime I noticed a new symptom come or go I would make a recording.

A few weeks later I had classes and I came across some voice recognition software that allowed me to speak to my computer instead of type. A translated my voice to text and I'm still using it this very moment. I sat down and decided I was going to convert all my audio recordings to text because I dad just started a blog about my MS and I wanted to post my progress. Earlier that day someone asked me how I was doing, like the pessimist I apparently am, I said "not to much better". After I spent the time converting my audio journal to text, I look back at what I said, and thought " damn, what was I thinking?".

Looking back on my journal I saw just how much progress I actually made Because like you said it is so easy to think about just the negative and lose track of the good. I am so glad I kept a journal, because it reminds me just how far I have really come. This greatly helps me maintain my attitude! So I will always recommend that anyone with MS should journal, I know that not everyone likes to write, but I think it's a healthy habit to force upon yourself. designate half an hour every day for journaling, you have to make a habit or else you will not stay on top of your journaling, trust me, that's coming from someone who greatly enjoys writing.

If you really can't stand writing I guess you could always keeping on your journal or video Journal however I find a written journal much easier to look back on. I wish you luck! Feel free to PM me any time, sometimes the best person to talk to is a complete stranger!

-Matt
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