I am on a constant quest to get out of my immediate surroundings. I am not having any problems, I just seek to get the most out of my life experience regardless of my physical limitations. In fact, I think it is the limitations I live with that have chiseled out the new me.
Just recently, with the help of my psyche, I joined a local book reading club. The club is located at my local library, which happens to be fairly close by my home. I can actually take my scooter and ride a block to the library by myself. That after all was the original intent. But the idea of heading there alone was a bit scary as most things are with me these days. Because I get so weak so fast and my varying cognition issues I’m afraid I will not be able to handle unforeseen precarious situations. Also the older I get, the less willing I am to veer off by myself. My inner self said that there are plenty things she wouldn’t do now that she would have been more than happy do when she was younger. So maybe it’s a sign of maturity. I’ll take that.
Well the book club has chosen to read an inspirational book geared toward young men. It’s called “Letters to a Young Brother” by Hill Harper. It’s not a book I would’ve chosen on my own. But I figured it might help me relate to my young nephew in an uplifting manner. A friend once told me, I could have a positive influence on my nephew that had nothing to do with multiple sclerosis. I took that and ran with it.
So you could imagine how happy I was to see the underlying current of this book was one could be “unreasonably happy” in life. I think that is a pretty awesome goal to shoot for every single day regardless of your life circumstances.
Unreasonably happy…I like that.
Now if only I could conquer this darn fear.
“Nothing tangible and outside of {myself] can be the source of happiness.” -Hill Harper
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.
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.
Sometimes it’s nice being amongst those who can sincerely relate to and understand me.
Despite the sun sucking the energy right out of me at 85° Fahrenheit, I sat outside a local park coffee shop for an hour and a half and mingled with a newfound friend. She just may have thought I was drunk because I was so giddy to be in her company.
She’s actually the group leader of my local MS support group. I’ve been complaining about being lonely and bored. Lately I’ve felt confined to this condo. Once its newness wore off reality set in.
Thanks to the quasi independence my power chair affords me, I can continually visit the lobby, the mailboxes, and the sitting area. I’ve befriended just about all the employees in the building. I wonder if when they see me they say, “Oh my here she comes again.” Regardless, I love getting dressed and yelling to Tommy, “I’ll be back soon!”
I am beginning to almost physically feel the degrees of separation between my closest friends and I expanding. It’s no ones fault. It’s just a function of time, proximity and the business of life. I mentioned I was bored and lonely in my monthly MS support group meeting. The next day the leader called me up and invited me out for coffee! What a trooper.
Don’t get me wrong, horseback riding and Tommy are great. I just need more female camaraderie. The point is sometimes you’ve just got to go out and get what you want for yourself. And that’s exactly what I did.
In turn that makes me feel…well…PROUD!!!
Plus my sister is coming back in town Friday. It can’t get any better than that.
Sometime ago, I promised myself to keep moving forward with MS instead of letting it drag me into an abyss of loneliness, self-pity, anger, and depression. I reluctantly accepted the fact that it’s highly likely I will never walk again. Of course that comprises all the things that are included with the privilege of walking, such as driving and any semblance of independence.
Now I am having problems with my hands! I’ve mentioned that I need help completing common daily tasks, like combing my hair and using my computer mouse. I just do not have the physical strength anymore. I’m using dictation software now because of it. But it’s so much more than not being able to type or open a jar of peanut butter. Usually in the morning I’m okay, but as the day progresses my functionality diminishes.
My worse nightmare came true years ago when I was relegated to a wheelchair. And guess what? I adapted and survived it. A fellow blogger reminded me, “all the things that I’ve been afraid of, or worried about in the past, are water under the bridge now.” So much truth resonated in those words. The life I lead now was unimaginable to the former able-bodied Nicole. But I’m still here and I’m going to lean toward life.
It won’t be easy, but at least I’m not alone. My goal is to be satisfied with what I have and take delight in the way things are.
A very tall order for anybody.
“There is no need to suffer silently and there is no shame in seeking support.” – Catherine Zeta Jones
Sometimes I need help navigating this maze I’m living in. At times I feel lost. Lost in the unknown. Lost in a realm of uncertainty.
Sometimes I need help with things you can’t see. Things no one can see. Feelings I barely know are there. When these feelings manifest they can take over my life. Causing not only anger and resentment but also an unexpected sense of physical and mental pain. I try my best to fight back the pain, but sometimes it can be overwhelming.
I’m just so tired of MS right now. Everyday something is being taken from me. My vision, strength, and cognition are all up for grabs. I just want to escape.
But, how do you escape from the demon when it lives inside of you?
Still, I know that somewhere in my sadness there is happiness. I know this because some days I feel rich even in the midst of my pain. I have discovered that happiness comes from within. On those days that I find happiness, the pain disappears. I just need help reaching that point.
I need help getting to the other side of the pain.
I’m sure we’ve all felt this way in one way or another. You don’t have to have a chronic disease to feel this way. I want to be all that can be for those whom I love around me. Due to one excuse or another I find that I am not.
I just realized, I’m not the big sister I want to be. I may be falling short. I’ve been so wrapped up in what’s going on with me.
You know I rely heavily on my husband, Tommy. If you follow this blog you also know that my parents are more involved in my life than I’d like to admit. But I don’t often talk about my dearly beloved little sister. She’s six or seven years younger depending on the time of year. She’s taller than me and she has an adorable 10 year-old son. Actually, she was taller than me long before I was in a wheelchair. She’s opinionated and feisty. Even family members tend to think she’s the oldest. She always owns the room with her bigger than life personality. I admire that.
I worry that I’m not giving my “little” sister the attention that she deserves. People I trust have rightfully called me selfish in the past. I have to consider that I’ve let my illness cover up the rest of me; including my fragile relationships. My sister and I have the same ups and downs as most siblings; I may just scrutinize ours a bit more.
I have a lot of work to do in living with MS and letting people in at the same time. I know that who I am inside, multiple sclerosis cannot touch… unless I let it. I know that she loves me too, despite MS. As a matter of fact, I’m sure that my disability matters more to me than her.
So, as I sit here anxiously awaiting her short visit from out of state, I cross my fingers and hope that all goes well.
I can’t wait to see her!
Today is different. I’ve been having increasing difficulty typing. I previously promised myself that if this ever happened I would use assistive devices available to me. That is, no matter how humbling it may be. Because like it or not I’m not the same woman I used to be!
Now, today is different because I’m using dictation software in order to complete this post.
I guess you can say it’s a milestone of sorts. In fact over the course of the last few years every time I had to start using a new device I considered it a very big deal. Whether it’s my cane, walker, wheelchair, scooter or power chair, I had to accept my new reality. Or as we say every year it seems to be something, and here once again is one of my new normals. To be honest though, I saw this one coming. More often when I’m tired, I’m require help to do normal, easy, simple tasks; for example buttoning my shirts or putting on my own deodorant or sometimes even feeding myself! Thank God for my husband and my mom.
Fortunately, with this computer program I simply speak into the microphone on the computer and it in turn types what I say. I really, really didn’t want to use it or anything else. It was hard to accept any kind of help at first. But, I figured in order to keep with what I preach… I had to. Writing has become my outlet from MS. I’ll be damned if I let multiple sclerosis shrewdly yank that away from me too.
At first for me, like many others, multiple sclerosis meant only blurry vision. But look at me now. I imagine I’m going to accept my new typing limitation and move on to embrace this dictation software on my computer. I may even be drawn to purchase brand name fancy software. Who knows?
I’m even having problems using my computer mouse. My hands just will not listen to me. I did however read about a device that moves your mouse with your eye movement.
Maybe in a few months I’ll be ready to tackle that one.
