U Are My Motivation

I love all the feedback.

“God gave you a gift of 86,400 seconds today. Have you used one to say thank you?” ~ William Arthur Ward

I usually write about what is happening in my life but this post is about you. I want to thank all of you for your support and encouragement throughout the year. Five years ago at the age of 35, multiple sclerosis forced me to stop working. Since then, writing this blog is what I do. It’s become a big part of me and so have the people who read it.

My favorite component of the website is the comment section. I always read them even if I don’t always answer back. I also love receiving private messages from all over the world. Some e-mails are from friends and family of people with MS who are seeking advice. But most come from fellow MSers who just need to talk to someone who understands what they are going through.

This is why I write. To let families, friends, caregivers and anyone living with MS know they are not alone.

I must admit, I am slowing down and it is getting harder to maintain the website. But all the positive feedback inspires me to continue.

So far, My New Normals has provided me with a lot of amazing opportunities. And I’m very excited for what 2016 will bring.

Thank you for reading. You help motivate me to keep fighting this disease. I’m so grateful for all of you.

Happy Holidays and Happy New Year!

Mourn The Loss

It seems I need help with everything.

While grief is fresh, every attempt to divert only irritates. You must wait till it be digested, and then amusement will dissipate the remains of it. ~Samuel Johnson

It’s a good thing that my caregiver/husband and I get along, because I never would’ve imagined depending on him so much.

In the beginning of this newfound dependency on others, I was not a happy camper. I probably was defensive to the very people that were trying to help me. It’s just that we all have this picture of what life should look like and my reality just was not matching up.

Nowadays it seems I need help with just about everything. And to make matters worse or more complicated for all involved, I don’t need that help all the time. This confuses the person, normally my husband, as to when to help and when not to help.

Does that make sense?

I know he is only concerned about me. In the meantime, I’m so busy trying to hang on to my last bit of independence by continuing to do what I can on my own. I think this is a good thing.

I also have to accept there are things I can no longer do safely by myself. For instance, I need help getting on and off the toilet. It’s not every time I go, mostly just during the night or early in the morning. The other day, I had a nasty fall in the bathroom and it scared the life right out of me. Mind you my bathroom was newly made handicapped accessible. So, it seems no matter what, falls can happen.

I need help with transferring from one chair to another. That is, transfers from my scooter or wheelchair to the dining room table or to my favorite reading chair. Something I used to do with no problem.

I’ll be honest with you. It’s hard. To make it easier I quickly mourn the loss then I move on. The thing is, if I persist on focusing on what I’ve lost here, I will lose and MS will win once again. And it has taken away so much from me already.

I try to remember that our job as MS fighters is to make the most out of what we can do, no matter how small.

Network of Caregivers

I love all my family and friends!

My mom is the eldest girl of 10 siblings. Most of my feisty aunts regard her in a respectful maternal manner. After all, the younger siblings she practically raised herself, as my grandmother was just plain old tired.

This past weekend when she called upon one of my aunts to take the lead in assisting me with my activities of daily living, my aunt Gail was eager to rise to the occasion. And that she certainly did. Keep in mind we spent the weekend at my mother’s home. She is in the process of making her home handicap accessible for me. So some things were a little more complicated. This particular weekend I needed more help than I do normally. My aunt Gail helped me to take a shower. She in fact, in the process got as wet as I did.

She found herself huffing and puffing as she attempted to help me dress afterwards. She had trouble working with my legs that refused to bend. She was constantly worried about hurting me, but I told her that in actuality I just might hurt her. As she pushed my legs with all her might, she kept asking me, “How many muscle relaxants have you taken?” She’s learning the lingo.

After we finished and I was dressed she sat, took a deep breath and declared,” Remember, I am 59 years old!” Then she politely fixed her jewelry, and hair and got back to work on me.

photo

By the end of the weekend she knew exactly what I needed, what I could do for myself and what I couldn’t do. My mom’s plan worked out beautifully. I simply enjoyed the company and felt like once again my mom saved the day through the help of my aunt Gail. I love them both!

It helps to have a network of caregivers if you can.

Forever Grateful

Thank u to all that have supported me throughout the years.

I don’t know how I would be able to manage this horrific disease if I didn’t have so many beautiful people in my life. I receive so much love and support and I would like to thank my family, friends, and Internet buddies for all their encouragement and assistance. I wrote these words especially for you.

You always see the smoke before the fire
When my spirits are down you lift them higher

You remember for me when I forget
You steady the needle before you inject

You talk for me when I can’t speak
And hold me up when I am weak

You stand for me when legs will not
Just hearing your laugh makes the pain stop

You’re my best friend, my shinning star
When I need help you’re never too far

You say you understand when I know it’s a lie
But I appreciate your empathy it helps me get by

You still ask my opinion when a decision is made
Even though my past judgments should make you afraid

You’re always there anytime of day
When I reject everyone you come anyway

I hear you cry when you think I’m not there
You carrying my burden just isn’t fair

Despite all my moaning, complaining, and strife
You still keep me in your life

This disease is so very hard to live with alone
You have embraced when most would disown

Thank you family and friends for all that you give
I will be forever grateful for as long as I live