health Archive

15

Attack Of The Clonus

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“When we meet real tragedy in life, we can react in two ways – either by losing hope and falling into self-destructive habits, or by using the challenge to find our inner strength.” – Dalai Lama

With my MS, I not only battle the sickness of the disease but also it’s side effects. My latest side effect is sore legs.

Why is that, you might ask? Well, its because I have clonus.

Clonus is a series of involuntary, rhythmic muscular contractions and relaxations. Unlike small, spontaneous twitches, clonus causes large motions that are usually initiated by a reflex. It is a sign of certain neurological conditions, particularly associated with upper motor neuron lesions involving descending motor pathways, and in many cases, accompanied by spasticity.

So when you look up clonus in the dictionary you see a picture of me.

It’s weird because, despite not walking, the clonus causes my legs to continuously move. When my foot is placed in a certain position, my leg jumps around like a jackhammer. I hate the vibrations. They jerk me all over the place until I find the right position that will not set it off.

When it’s happening, it’s like there is something in my body that’s alive and moving around. My legs uncontrollably bounce up and down and by the end of the day they are usually sore and tender.

Having it isn’t the end of the world; it just bothers the heck out of me.

Do you suffer from clonus or have at least heard of it?

If so, how do you deal with it?

9

The Power Of The Chair

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“Never worry about numbers. Help one person at a time, and always start with the person nearest you.” ~Mother Teresa

I own two power chairs. One is portable and the other is heavy-duty. Due to limited space in my home, the heavy-duty chair has been stored at my parent’s house. I never use it and it just sits in their dining room taking up space. My parents didn’t mind it staying there, but it bothered me. So last week I decided it has been at my parent’s house long enough and it was time to sell it.

So, what did I do? I took some pictures of it and tried to sale it on Facebook. I thought it was a good idea, but apparently…no one else did. Not one call.

Plan B was to give it away. I wish I had done that from the start.

I connected with my local MS Society and they gave me some leads of people who were in need. After a few days, I was able to connect with a fellow MSer who needed a power chair.

I recruited my dad to handle the specifics and the actual transfer of the chair. He’s good with that kind of stuff.

The man resides roughly two hours from my parent’s home, but was happy to make the trip. He was so appreciative.

Who knew how rewarding helping someone would be.

16

Living Cliché

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“We have to dare to be ourselves, however frightening or strange that
self may prove to be.”
– Mary Sarton

I wish I had a boring life.
I would be a mom with two kids and a stay at home wife.

I’d watch TV half the day.
Then shop the other time away.

I’d have lunch with friends.
Then, the next day, meet them again.

Go dancing on weekends and stay up late.
Every night, dinner with my husband is a usual date.

No medicine to ingest. No shots to inject.
I can go all day, no need for rest.

No doctors to see. No nurses around.
I’m always happy, you never see me frown.

I wouldn’t have to explain why I’m in a wheelchair, because there would be none there.

I would go to the movies and watch it from beginning to end.
I would run at the park with all my old and new friends.

I would sleep all day by choice.
And when I spoke, everyone would respect my voice.

No more smiling out of fear.
I’m the best at everything, the envy of all my peers.

My husband would be my husband, not my caretaker or nurse.
I would love that the most, because that part hurts the worst.

Am I wrong for wanting to be like everyone else?
I’m sad that I feel this way, but I really wish my life were a cliché.

19

Pure Magic

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“Hope is a good thing, maybe the best thing, and no good thing ever dies.” – Stephen King – The Shawshank Redemption

I am trying to live beyond MS. It has produced so many obstacles in my life that I can’t see anything but the negativity that arises from its poisonous grasp. The disease comes with countless constraints that induce me into becoming a prisoner to its daily whims.

It stunts desires, kills cravings and destroys aspirations. Sometimes it feels as if it’s choking the life right out of me. Even thinking of it now leaves me breathless.

MS hurts. If you let it, the pain of the disease can pull you down further than hell. Lower than you can ever imagine. The whole magnificent emptiness that is MS, wants to control your life and destroy any semblance of happiness.

In my fight to remain in control my main refuge has been hope. Hope is the only thing that keeps me sane. Hope brings me clarity. It sometimes takes me away from MS. It allows me to focus on a particular instant of MS free happiness. And those moments, when I forget I have MS, are nothing short of magic.

Pure magic.

22

It Was A Success

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“Persistence and resilience only come from having been given the chance to work though difficult problems.” – Gever Tulley

I recently received a suprapubic catheter. The surgery was completed with no problems or complications. The main reason I had surgery was I no longer held complete control over my bladder function and the catheter will help me regain that control.

It was an outpatient procedure that lasted an hour and a half. My urologist and his team made me feel so comfortable during the preoperative instructions and evaluation that I urged my mother to stay home. My husband was there and that was enough support.

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Despite my comfort level with my doctors and the surgery, I still had the normal pre-surgical jitters.

So to ease my doubts, I persistently played in my head the reasons why I was getting the procedure done. I remembered the sleepless nights. We were waking up every three hours to use the restroom. I vividly recalled the times I returned home from a night out wearing wet soggy Depends. I called to mind dozens of ruined outings due to a weak bladder and the endless anxiety about the “restroom situation” every place I went.

I used all of these memories as my motivation to continue with the surgery.

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Now the big question is…

So, was it worth it?

The answer is…

An overwhelming YES! I would do it again tomorrow.

It’s been less than a week but so far so good. And as we all know, there is a learning curve with everything. So as I learn, I will let you know. But for now it seems to have worked out.

It was a success.

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13

Therapeutic Horseback Riding

I am back at the farm for another season of therapeutic horseback riding.

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I ride until August, then we take a couple of months off because of the heat.

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It cost $25 and I go once a week.

I really love it and recommend it to everyone.

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Meeting my new horse. (Video)

23

Wish Me Luck

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“Life is a crisis – so what!” — Malcolm Bradbury

Over the last few years, I have had bladder problems. Before now, it was simply an inconvenience. But lately it has gotten out of control.

Everything I have tried has failed. I’ve been on various medications. I wear Depends religiously. I’ve even tried self catheterization, with little success.

I am still aware of when I need to pee; I just cannot get to the toilet in a timely fashion anymore. And when trying to use the restroom, timely is the name of the game.

I’m just simply tired of “accidents”. So this week, in an outpatient procedure, I will receive a surgically implanted suprapubic catheter. My urologist tells me it’s common for patients with multiple sclerosis.

What do you think?

I’m not really clear how visible it will be or how often it will have to be changed. Basically, I have a lot of questions. I’ll be sure and write them down so I can get the answers during my consultation.

I just can’t wait to be happy and dry. Wish me luck.