Walking Archive

MS Milestones

– 29 April, 2013Posted in: Acceptance, chronic illness, Depression, health, Independence, Moving forward, MS, Multiple Sclerosis, Sadness, Walker, Walking, Wheelchair

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.

Tags: computer program, hands, loss of vision, MS, multiple sclerosis, scooter, typing, vision, walker, walking, wheelchair

Twists and Turns

Nicole Lemelle

– 1 April, 2013Posted in: Bladder Issues, health, Independence, MS, Multiple Sclerosis, Sadness, Walker, Walking, Wheelchair

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 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.

Tags: chronic disease, god, health, MS, multiple sclerosis, restroom, stroke, support, toilet, walker, walking, weak, weakness, wheelchair

Sad Not Crazy

Nicole Lemelle

– 5 March, 2013Posted in: Acceptance, chronic illness, Depression, health, Moving forward, MS, Multiple Sclerosis, Sadness, Walking

Can I be sad?

Whenever my friends are sad about something everyone around them seems to understand. People tell them, “A good cry will do you good”. Well, when I cry people say, “Maybe you should see somebody about your depression.”

Depression?

What depression?

I’m not depressed!

I’m just sad that my legs aren’t working today. I’m upset that I just slept 10 hours and I’m still too tired to get out of bed. I’m mad that I can’t enjoy a movie at the theater because I have to go to the restroom five times in an hour. That’s not depression that’s a legitimate reason to be disturbed.

Don’t get me wrong, I am all for incorporating psychological therapy into the treatment of a disease. I have in the past used a social worker and a psychotherapist to help me deal with my illness. But that doesn’t mean I’m not a stable person who can’t handle adversity on my own. On the contrary, I believe people who suffer with a chronic debilitating disease are stronger than most. Not because we are born stronger than everyone else but because we have to be stronger in order to live a somewhat “normal” life.

When I cry everyone seems to be worried that I am going to hurt myself. I understand the concern but please step into my shoes. Since being diagnosed I have lost and regained my vision, spent 3 weeks in rehab after an exacerbation and lost my ability to safely walk alone. Now ask yourself would any of these events make you cry?

I just want the same consideration.

So please my friends, just like everyone else, can I also have a “good” cry?

Tags: chronic illness, cry, Depression, loss of vision, MS, multiple sclerosis, progressive disease, Psychology, psychotherapist, rehab, sad, sleep, tired

Horse-N-Around

Nicole Lemelle

– 12 February, 2013Posted in: Acceptance, Authentic Happiness, Bladder Issues, chronic illness, health, Independence, MS, Multiple Sclerosis, Physical therapy, Walker, Walking

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.

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.

Tags: Ann Romney, horse, horseback riding, insurance, MS, multiple sclerosis, therapeutic horseback riding, walker

Letting Go

Nicole Lemelle

– 25 December, 2012Posted in: Acceptance, chronic illness, health, MS, Multiple Sclerosis, Walking

It’s challenging when situations arise and the best thing you can do is…do nothing at all.

We are in the middle of moving from our apartment to the condo we just bought. Things actually, went fairly smooth. My husband did most of the packing and we hired a moving company to transport our furniture and possessions. In the midst of all the hustle and bustle I felt overwhelmed by the amount of stuff we had. Then my husband reminded me that we basically have the same amount of stuff now as we had three years ago when we moved in our apartment. We live humbly.

Slowly, I realized what the real problem was. The last time we moved I could physically help out and now, riddled with multiple sclerosis, I cannot. Three years ago, I could actually pack boxes and lift a few things and function independently in general.

I begin feeling like a useless shell of my former self. My husband saw my impending mental collapse and gently pushed me toward the things he knew I could handle. I changed our mailing address online. I took care of the electricity and cable needs with a few phone calls. I coordinated with a contractor to help us modify a bathroom. I met with the condo manager to ensure the condo association was on board. These things made me feel relatively useful and temporarily fulfilled.

My feeling of accomplishment was temporary because by the time we were in the new place among piles of boxes and scattered furniture I became a prisoner in my own home. I couldn’t safely hobble about nor use the scooter. I was a walking, no pun intended, fall risk. This frustrated the hell out of me!

Again, I fell forward… right into my computer. Not literally, although that very well could have been the case. I mean I found something I could do. Talk to you guys! So I sat back chatted on Facebook and Twitter and let my husband take control of the moving process.

Later I began feeling silly for basically just feeling sorry for myself.

I realized that I have better things to do.

Tags: control, facebook, moving, MS, multiple sclerosis, scooter, twitter

Happy Land

Nicole Lemelle

– 10 December, 2012Posted in: Acceptance, Authentic Happiness, chronic illness, Cooking, Depression, health, Independence, MS, Sadness, Walking

After I got off the cruise ship from my recent vacation and stepped back into my real world, a certain familiar mundane mood came over me. In the past when I would feel slightly depressed, I’d picked up a self-help book and attempt to “fix” myself. I guess this time I got a case of cruise lag because I started reading “The Happiness Advantage” by Shawn Achor.

I still openly lament the fact that I can’t safely walk alone, cook on a stove and I miss I the independence I use to take for granted. Okay, that’s enough of that; I think you get my point.

To be honest, I believe that if all these things were somehow given back to me, I would automatically be happy. It’s similar to the way one may believe that happiness will come when they lose weight or get that big job or promotion. But the thing is when we do get it we are happy for awhile then the bar gets raised and suddenly there’s something else a little farther off into the distance we need to be happy again. It’s like a never-ending journey to “Happy Land”.

This book has presented to me an entirely new concept. I’m only on page 80 of 210 but this is what I got so far. It basically shows us how to leverage the power of positive thinking in our lives. It says that we must be happy first where we are and then you can be more motivated and productive. In other words, happiness precedes important outcomes and indicators of thriving. The most interesting thing to me is that our external circumstances predict only 10 percent of our happiness. It’s teaching me to constantly scan my life looking for positive possibilities dormant in every situation.

The book’s author goes on to explain different exercises and principles that are very realistic. No, I’m not talking about a bunch of positive fluffy mumbo jumbo. That’s not really my thing. The lady who recommended the book to me is also in a wheelchair with multiple sclerosis and she said it has helped her cope. I took her recommendation to heart because a few years ago I think I may have overestimated the negative effects that living in a wheelchair would leave on my life. And so far this book has opened my eyes to new possibilities. I have new ways of looking at the same things.

I’ve decided to adopt an optimistic explanatory style to interpret the world I live in. I’m seeking out the positive. Something I don’t usually revert to. My husband once said that if I won the lottery, I’d be worried about paying the taxes! The idea that things are never as bad as we originally think is not a new concept. I just usually blow things way out of proportion.

Achor says it’s about using that downhill momentum to push us in the opposite direction. Now that seems tricky to me but I’m willing to give it a try. The question remains, can a change in my mindset really change the objective world around me?

“The Happiness Advantage: The Seven Principles of Positive Psychology That Fuel Success and Performance at Work” by Shawn Achor.

Tags: MS, multiple sclerosis, positive thinking, Psychology, Shawn Achor, The Happiness Advantage

Immune Compromised

Nicole Lemelle

– 23 October, 2012Posted in: Acceptance, chronic illness, health, Moving forward, Walker, Walking, Wheelchair

Finally, I got a new non-multiple sclerosis endeavor to talk about! Well sort of…you’ll see.

My husband and I are trying to buy a new home! Yes and I naively thought banks and/or credit unions would have a separate grant program for people with disabilities. Especially, since our income is drastically less than it was pre-diagnosis. But no, they don’t. I guess the best answer is to earn as much as you can before joining the disability club. Also, make sure you get long-term healthcare insurance through your employer while you’re eligible.

I thought that in accordance with the Americans with Disabilities Act, financial institutions would make certain accommodations. Meaning lower interest rates for people living with disabilities, but I quickly figured out they don’t. Besides the financial issues, I’ve also found myself weighing options I haven’t considered in a long time. Surprisingly, it was quite welcoming. I’m pondering things like, what’s more important, having a bigger living area or larger bedroom? Let me tell ya, I’d much rather make those decisions than what disease modifying drug to pick. I must admit, having MS has taught me not to sweat the mundane issues. Past hardships don’t seem so problematic anymore because I’m becoming immune to worrying.

But I’m still not completely enlightened yet. As it turns out, the home I really want is out of our financial reach. When will I just be satisfied with what I have or in this case, can afford? But that’s the human condition. That’s the reason for the whole stock market crash, right? I always want more. Be it walking or scooting around. I never quit. I remember a time when all I wanted was a scooter. Now, I have it, but I keep busting my butt trying to use my walker. It’s so ironic that I’m drooling over square footage that I can’t even walk?

The next day, as we were leaving to meet with our realtor the phone rang. It was my doctor. Apparently Gilenya, the pill I take for MS, is doing a serious hacking on my white blood count and my doctor wants me to go to the emergency room if I get a fever, feel lightheaded or dizzy. A low white blood cell count means your immune system is suppressed. This leaves me open to getting sick really easy. The plan is to let my counts rise again and start on the other new MS pill. He said it has just been released and is safer than Gilenya, but it’s not as affective. Ultimately, it might also lower my white blood cell count! Great! (I’m being sarcastic)

Nevertheless, I pulled it together met with my realtor and put in a bid on a new condo.

See we just got to keep moving forward with or without an immune system.