Acceptance Archive

The Other Side

– 13 May, 2013Posted in: Acceptance, chronic illness, Depression, health, Moving forward, MS, Multiple Sclerosis

“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.

Tags: catherine zeta jones, cogntion, Depression, fatigue, help, MS, multiple sclerosis, sadness, strength, support, vision

MS and Relationships

Nicole Lemelle

– 6 May, 2013Posted in: Acceptance, Authentic Happiness, chronic illness, health, MS, Multiple Sclerosis

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!

Tags: chronic illness, MS, multiple sclerosis, sisiter

MS Milestones

Nicole Lemelle

– 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

All Is Well

Nicole Lemelle

– 21 March, 2013Posted in: Acceptance, Authentic Happiness, chronic illness, health, New Orleans

I can remember years ago when the focus of my life wasn’t multiple sclerosis. There was a time when I wrote emails that didn’t pertain to MS and the subject didn’t dominate my every conversation. But unfortunately those days are over.

It bothers me that my “new” life is all about MS. Sometimes I forget that there’s more to me than multiple sclerosis.

I use to think it regrettable that you guys didn’t know me before MS. I was so active. But now that I think about it, I’m still very active. It’s just a different type of active. I participate in riding horses on a local farm. I’m even presently seeking out more MSers to join me through the National MS Society. I do modified physical workouts, I study the Spanish language, I blog and write and I read incessantly. Lastly I watch as much TV as I can fit into my schedule. I’m not sure if that’s good or bad.

So, what do you do in your free time?

I wanted you to know that life is not all bad. We may have to plan a little more than others, but life is not all bad. The horrible stuff just makes for better reading.

Thanks to you guys, I now know that the woman I am beneath the MS continues to shine through and most importantly that there’s more to us than multiple sclerosis!

Tags: ALS, chronic illness, Morrie Schwartz, MS, MSers, multiple sclerosis, National MS Society, therapeutic horseback riding, workout

Another New Drug

Nicole Lemelle

– 16 March, 2013Posted in: Acceptance, Authentic Happiness, chronic illness, Moving forward, MS, Multiple Sclerosis

What do you think about the new oral pill BG-12 for MS?

It’s still going through rigorous trials and the last I heard it would not be out until March of this year. Moreover, it’s intended for patients with the more common form relapsing-remitting MS. I on the other hand have an advanced case of secondary progressive MS. I have tried many different medical therapies and I’m starting to feel like a pig grubbing on table scraps thrown his way.

“The two new studies, published online in The New England Journal of Medicine, found that the drug BG-12, developed by Biogen Idec, reduced relapse rates in patients with relapsing MS by about 50 percent. The drug also significantly reduced the frequency of new brain lesions often associated with these attacks, and slowed the progression of disease compared with a placebo.”

Will you switch therapies? Or better yet, how emotionally invested are you in what you’re taking now? Personally, I’m not attached to Copaxone at all. I’ve seen a continual decline since I’ve been on it.

I get confused though; because all these drug treatments are simply supposed to slow the progression down, not necessarily halt it. So am I asking for too much from a pharmaceutical treatment? Or are they helping on levels I’m not acknowledging?

I do realize that if I wasn’t actually taking anything, I could be much worse. I just learned of another blogger whose ill health lead him to end his life! Despite all my complaining, I’m nowhere near his physical state and I thank God everyday for that gift. I do respect his choice, as I wasn’t living his plight. I feel deeply heartbroken for him and his family. I somehow think the best homage I can pay is to continue doing what I can. BG-12, Baclofen, Pumo or not. (By the way I decided not to pursue the pump I mentioned in an earlier post.)

This time around I won’t get my hopes up on this BG-12 therapy. I’m going to continue my relatively full schedule of modified workouts, horseback riding, writing and spending time with family and friends.

After all, it can’t get much better than that, right?

Tags: baclofen pump, BG 12, biogen, chronic disease, Copaxone, disability, horseback riding, MS, MS pill, multiple sclerosis, relapsing remitting multiple sclerosis, Secondary Progressive Multiple Sclerosis, switching therapy, therapeutic horseback riding, treating multiple sclerosis

Searching For Positive

Nicole Lemelle

– 11 March, 2013Posted in: Acceptance, Authentic Happiness, chronic illness, health, MS

I hate multiple sclerosis. I hate myself for getting it even more.

I really don’t hate myself I just get so mad sometimes. I just don’t know who to be mad at.

So who’s to blame?

I guess no one.

Since I really have no one to point my anger towards, sometimes I just internalize the resentment. I try to stay positive but it doesn’t always work. Everyday at some point, doubt creeps into my mind about my ability to maintain this battle against the catastrophic effects of MS. It causes everything to be put on hold and defers episodes of my life. MS is constantly evolving; sometimes everything is okay and the next day a crisis occurs. It’s like a dark cloud continuously hanging over my head causing me to repeatedly look for a break in the storm.

Everyday I dream of a silver lining that will nudge me forward when it seems that all hope is gone. Those rays of sunshine that help me make it through the day. And just when I am about to give up, it reveals itself. Sometimes it isn’t obvious and I may miss it at first, but once I open myself up to receive it and pay attention…BAM! There it is!

It might be a call from a friend or a message from a stranger on the Internet. Sometimes it’s the FedEx guy delivering a package and asking me how’s my week going. The other day I was feeling tired and weak then I remembered it was my mother’s birthday and I temporarily felt better.

I have never won the lottery but these rays of sunshine that I receive everyday are at least a small blissful equivalent. I believe something positive always appears after something negative has happened. So whenever I’m down because of a symptom I try to look for the positive that I know is coming.

Tags: chronic illness, Depression, happiness, MS, ms sucks, multiple sclerosis, postive

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?