Walker Archive

36

Small Victories

big-vs-small

Some mornings I wake up and I just can’t do it. I don’t want to battle MS anymore. But somehow I muster up the strength to fight the good fight and begin my day.

I have tremors in my hands, which makes using them exceedingly difficult. At times I’m unable to hold a fork or spoon and transferring myself in and out of my power chair is becoming more challenging due to my lack of strength and mobility in my arms and legs. Most nights I feel like someone borrowed my legs and ran a marathon.

Lately my body aches wake me up before the rest of me wants to be awake. Then I spend the rest of the day exhausted and wanting to just climb back into bed.

I can remember when I was so active. I did so many things. What happened to me? Why has MS consumed so much of my life?

It is so frustrating to have such a hard time even taking a few steps without using a walker or the wall. I feel like a wax dummy fighting a fire that is MS.

The other day after taking a nap I woke up and steadied myself to go to the restroom but my legs didn’t follow. I quickly fell straight to the floor. I gathered myself and began to crawl to my wheelchair. It took me about five minutes to situate myself in my chair and make it to the restroom. But I did it and I was so happy.

Believe it or not, nowadays I consider that a victory because no one saw me crawling on the floor and I was able to hold my business until I made it to the restroom.

I guess when life hands you hard times any positive moment, no matter how small, is welcomed. Even the small victories can be huge.

small-victories

35

Can You Relate?

OK

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.

At the park

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.

46

Tall Order

wheelchair shadow

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.

NICLEM_0030

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.

31

MS Milestones

broken computer

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.

MS Sucks

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.

32

Twists and Turns

A long road

My dad, who had a stroke a couple of months ago, shared a card with me that at the time we both could relate to. It said, “Do not worry that you’re not strong enough to make it before you begin. It’s in the journey that God makes you strong”.

The card also reminded me of a fellow MSer I met in passing. The encounter was a long time ago when I was still walking on my own. She was admiring how much physical ability I possessed. Then she lowered her head and confided in me, “Nicole, I can’t even lift myself off the toilet.” I subsequently squeezed her hand, offered a genuine show of support then we exchanged contact info and departed.

Now, years later, as I sit in my scooter I’m probably closer to her than she will ever know. I no longer have her info so I can’t reach out. Besides, what am I going to say? “Hey I can’t lift myself off the toilet anymore either!”

I am always in the toilet

I would’ve never thought I’d be here today. It’s been a long journey, but Tom (my husband) and I have made it through. He hears me racing to the restroom and just meets me there. He saves me from actually having to ask for help. It’s a very humbling experience. Actually, it’s mostly in the mornings that I’m the weakest.

How does one prepare themselves for this?

This journey has made me into a different woman. I’m weaker yet stronger in more ways than one. Somehow my dad, Tom, and I are making it through despite all the wired twists and turns…but certainly not on our own.

32

No Escape

It is hard to get away from MS.
I would love to say one day, “I used to have MS.”

But since that’s not going to happen… at least not this weekend, I think I will stick with reality.

In my quest to escape multiple sclerosis, I’ve been weighing the possibility of getting a Baclofen pump implanted in my abdomen to combat my tight leg muscles. According to the Baclofen pump website,“This technology is to loosen overly tight muscles. The key is a surgically placed pump that continuously delivers medication to your spinal cord fluid.”

Sometimes my legs are like logs and then others times they are “normal”. When they are log like it can be pretty grueling to accomplish everyday tasks. Making it to the restroom on time is more difficult and getting in and out the bathtub is nearly impossible.

In my dream world, I’ll get this pump that delivers a muscle relaxant and then with a little strength training, I’ll be able to walk with a walker again. I just don’t know if that’s how it actually works in the real world. In all likelihood I’m probably not stiff enough for this therapy. Also, I’m not sure if Medicare covers it.

The truth is, my muscles are too weak for walking so tight legs may not even be the main problem. I am currently taking the Baclofen pills so I may just stick to the oral medicine.

Either way, the one thing I’m sure of is that there’s no escaping MS.

But that won’t stop me from trying.

River walk event

47

Horse-N-Around

If u want to ride...

The reason for my outbursts of relatively gloomy posts is because I just can’t seem to get a handle on what’s happening to this MS body. I just want some sort of reprieve. Now, I say this fully aware that things could always be worse. I am learning from your comments and my readings that the essence of who I am is still here. It’s perhaps why I continue to blog through this onslaught of “new normals”.

I just don’t know of any of my MS friends who are continuing to encounter decline. Or do I? Please let me know because I’m feeling alone on this one.

One good thing is that I recently started horseback riding. I began the process of registering a while back. There was quite a bit of paper work involved. I refer to it as legal mumbo jumbo. But once I got past that I was on my way to the horse farm.

Basically, the type of hippo-therapy I am doing mimics the action of actual walking. It works my core tremendously and also the muscles used for walking. I’ve been riding for three weeks. I go once a week for 45 minutes. I had to work up to 45 minutes of course, at first lasting for only 20 minutes. Since starting I find getting up out of the bed easier, so I think I may be experiencing the benefits already.

Horse in around

Though, I may be on this slippery slope, it’s so important who I surround myself with. I try to associate with supportive folks that love and help me in all my endeavors. I mean riding horses with spastic legs, minimal core strength and slight cognitive impairment is pretty risky business.

But listen, if you tell me this may move me closer to walking with even a walker then…SADDLE ME UP!

By the way they call it therapeutic horseback riding and it may be covered by your insurance if you get a prescription from your doctor. So far I recommend it. I guess Ann Romney was on to something.

I takes some doing for me to get o