Re: Re: [MSersLife] Rapidly progressing, feel need to mak...

[Guest guest]

In a message dated 8/13/2005 10:25:04 AM Central Daylight Time, tbayuk@... writes:

What mistakes did you make? What do you wish you had done in making these decisions?

How do you know if your illness will relapse enough and your changes would have not been necessary.

What would you do?

juliek

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,

I've learned so much the hard way! I went from being about a 2 on the EDSS scale to a 8 - 9 in less than 6 months. That's where I have remained for nearly 6 years. There is no way to know how you will progress. Hope for the best and prepare for the worst.

My 2 sons were 15 and 18 years old at the onset. My husband was around, but not much help since he had never grown up and everything was supposed to be about him!

Long story short; I divorced my husband (like I needed to go through that stress!), oldest son has graduated college and lives with me. Youngest son is a Marine Reserve and recently returned from Iraq. He lives about 6 hours away now. Ex-hubby couldn't make it alone and has now come back. He's actually more help now than before. A lifetime filled with stress!

When it comes to power wheel chairs, get one based on how you may progress. Not on how you are right now. I let a over-zealous salesman talk me into something two years ago that was not what I was going to need. I had no way of knowing, I thought it was their job to know what I might need. Of course, the company is not concerned! They got their $5000.00 from Medicare for a chair that cost them about $2000.00! The chair sets in my room with clothes stacked on it!

Family and friends may not understand that you can't afford to go places that aren't accessible. Grab bars and wide doors are essential. Without them, going to the restroom requires someone carrying or dragging you to the toilet! Then try getting clothing situated while someone is trying to hold you upright! Not easy! They can't understand.

I guess I'm stubborn! I scratch and claw and fight my way out of bed every day. I use a walker to lift myself off of the bed and turn and kind of just fall back onto my wheelchair. It ain't too pretty and even less safe, but it works. I keep my phone near so that I can call for help if necessary.

I still work at the police dept one day per week. Sometimes I wonder how I manage to get through a day, but I do. What choice do I have? At times, I really work hard to fight back the tears! What I used to do with one hand tied behind my back practically is so extremely difficult.

My parents are nearby, but not much help. They want me to be pitiful and dependent on them. I can't/won't do it. They won't allow themselves to see that the stress that they helped to create in my life has taken it's toll. That's a whole different story, but stress is a killer! You have to set boundaries and not let people walk all over you! I learned too late!

Keep things like dishes on a low level where you can reach them. Cleaning ladies can put things in the strangest places! Keep everything as easy as possible; clothing, hairstyle, makeup... I do still have some vanity!

Hope this helps!

Marcie