Independence Archive

23

Parade Days

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Last week I was in the hospital for two days after having an adverse reaction to my latest prescription. The symptoms were so bad that the doctors first thought I had a stroke. It wasn’t until all of my test came back negative that we linked my sudden change in health to the new medication.

Before this happened, I was excited because it is Carnival time. I have been going to Mardi Gras parades in New Orleans, Louisiana for over 30 years. But this year just wasn’t the same. I can’t put my finger on it but I didn’t have as much fun as usual. My guess is, since I really hate being in a wheelchair, being at a parade in a wheelchair just wasn’t enjoyable. I don’t like when people stand in front of me blocking my view. It’s funny because everyone is nice until the floats start throwing trinkets. Then it’s every man for himself. Also, bladder issues can cause a real headache especially since the portable restrooms provided by the city are not wheelchair accessible.

But my best guess at the source of my newfound melancholy feelings toward attending parades is the fact that I have been extremely tired lately. I am so weak these days that it’s hard to enjoy myself at events, especially ones that take so much energy. Parade days are all-day affairs that can last 5 hours or more. And there are usually multiple parades. The recent one I attended was actually three different parades. This is something I did all the time, but nowadays it’s just too much for me. And being only one day removed from the hospital didn’t help either.

After I made it home from the parades, I decided I would not attend anymore because they are just too taxing on me.

Moments later, following my declaration, I saw a picture posted by Steve Gleason* at a Mardi Gras parade. He helped me put my overreaction into perspective. So now I have decided that I won’t totally stop attending Mardi Gras parades. I’ll just adjust how long and how many I attend.

Happy Mardi Gras Everyone!

*(Steve Gleason is a former New Orleans Saints football player who is now battling ALS – Lou Gehrig’s disease)

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27

Mourn The Loss

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While grief is fresh, every attempt to divert only irritates. You must wait till it be digested, and then amusement will dissipate the remains of it. ~Samuel Johnson

It’s a good thing that my caregiver/husband and I get along, because I never would’ve imagined depending on him so much.

In the beginning of this newfound dependency on others, I was not a happy camper. I probably was defensive to the very people that were trying to help me. It’s just that we all have this picture of what life should look like and my reality just was not matching up.

Nowadays it seems I need help with just about everything. And to make matters worse or more complicated for all involved, I don’t need that help all the time. This confuses the person, normally my husband, as to when to help and when not to help.

Does that make sense?

I know he is only concerned about me. In the meantime, I’m so busy trying to hang on to my last bit of independence by continuing to do what I can on my own. I think this is a good thing.

I also have to accept there are things I can no longer do safely by myself. For instance, I need help getting on and off the toilet. It’s not every time I go, mostly just during the night or early in the morning. The other day, I had a nasty fall in the bathroom and it scared the life right out of me. Mind you my bathroom was newly made handicapped accessible. So, it seems no matter what, falls can happen.

I need help with transferring from one chair to another. That is, transfers from my scooter or wheelchair to the dining room table or to my favorite reading chair. Something I used to do with no problem.

I’ll be honest with you. It’s hard. To make it easier I quickly mourn the loss then I move on. The thing is, if I persist on focusing on what I’ve lost here, I will lose and MS will win once again. And it has taken away so much from me already.

I try to remember that our job as MS fighters is to make the most out of what we can do, no matter how small.

40

Square Peg

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“I’m just a square living in a round world.” – Philip Phillips

One of the things I hate most about being sick is that I feel as if society has forgotten about me. It’s just so hard to fit in when I can’t drive, I get tired so fast, and going to the restroom is an adventure. So since I just can’t do normal things, it’s as if I’ve just disappeared. The old Nicole is missing without a trace and the new Nicole is so misunderstood that most people shy away from spending time with her.

So instead of just sitting on the sidelines waiting to be accepted I have to remember that there are a group of people who I always have a great time interacting with. They are those who are on a similar path as me. My MS peers.

At a recent MS Blogger summit I attended, I felt a certain comradely with fellow attendees. At the heart of multiple sclerosis lies loneliness. Sometimes, no one is there to dry your tears. No one you tell understands your difficulties. No one in your life can comprehend the emotional and physical pain you can experience every minute of the day.

But this weekend, I had a group of people who did understand. So in consequence, I welcomed the chance to be surrounded by folks like me. It doesn’t happen too often. So during the event at every meeting and every bathroom break that forced interaction was welcomed. And when I talked, I felt heard. This made my insides smile. The event reminded me how important it is to get out and mingle with peers.

So for one weekend, I was happy the entire time. Maybe because for the first time in a long time for me, the square pegs out numbered the round holes.

37

Rainy Days

Rainy Day

As a child I was told that when it rained, it meant that God was crying. And his tears would wash away all of our pain and troubles. And still today, so many times when I pray, I pray for rain.

I also pray for a cure. I ask God to “fix” me. The sad part is I don’t pray for anyone else. Just myself. I know it sounds selfish but that’s what I do. I have become so consumed with getting better that the disease has made me selfish. Sometimes I neglect everyone around me, including the one’s I love the most, and that makes me sad.

My pursuit of normalcy also seems to have me waiting for someone to rescue me. Waiting patiently for Big Pharma to find a cure. Hanging on to broken promises of healing remedies and simple fixes. I hear them all the time. They’re all over the Internet and they come in my emails. These pills will repair your damaged myelin. You need to change your diet. Unblock your veins. Get more sun.

What’s a girl to do?

Who do I believe?

It all seems like a crapshoot and only the lucky survive.

Well, I want to be one of those lucky survivors. I love life no matter how hard it can be. I may complain and feel sad sometimes but that doesn’t mean I want to stop living.

But I must admit that I’m scared everyday. I wake up scared. I go to sleep scared. Everything just seems to be getting more difficult. Sometimes I wonder if this pain will ever let me go. I know I still have a life to live so I must carry on. And no matter how hard it gets on the surface, deep down I always know that I don’t want to give up. I just can’t give up. I can’t give up because I know I am being watched. I know I serve a special purpose.

And every time it rains, I look for that purpose.

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22

Wonder Woman

Wonder Women

This week I am completely energized to keep moving forward.

Last week after a personal ferocious crying storm, brought on by this journey with multiple sclerosis, I eventually made my way to my laptop and …wrote about it. It was my way of trying to move beyond the hurt, getting pass the suffocating isolation and unimaginable fatigue.

Tommy, my husband, on the other hand, uncharacteristically suggested an increase in my anti-depressant. After visiting both my psychiatrist and social worker they agreed upon adding another medication to the impressive list I already drag around. So I’m now supposedly transiently taking not only Lexapro but also Cymbalta. I know I have to give it a few days, but so far things are going fine. No scary side effects and no crying either!

It doesn’t stop there. I have to do my part too. I have to engage in life by participating in as much as I can. Exactly the kind of things you run from when depressed. When I was busy crying I was focused on the things I could no longer do. I just wanted to hide in bed and shut every one out. This is what I got instead.

Long time friends from both high school and college dropped by. We talked about old times and new ones too. Another friend even gave Tommy a break by bringing me to a doctor’s appointment. She was new to my scooter, but graciously learned how to assemble and break it down to fit in her car. She stayed the afternoon; we ran errands and ate dinner at a local restaurant. Tommy even called me thirty minutes into our excursion to make sure I was okay. How cute! In fact for once I was able to bring dinner home for him.

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The point is I opened the door and allowed friends to see me for who I am now, regardless of what I could do the last time they saw me.

Little did I know my latest friend is an actual photographer. She showed up and we had a real photo shoot for Halloween. She even brought over the lights and costume too!

86

Clinging To Sanity

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I’m not clear what happened differently this week. I don’t have any new symptoms. Everything I can’t do, I haven’t been able to do in years at this point. My husband is still doing a good job taking care of me. We have not even been arguing. I’ve been seeing my same psychiatrist and I’ve really been doing my part to cling to my sanity.

But yesterday, I completely lost it. I cried endlessly all day long! I hate crying. I especially hate doing it in front of my husband. Because, I know there’s really nothing he can do and men always want to “fix” the problem. The thing is I don’t think there is a way to fix me.

Since nothing has changed, I am fiddling with the idea of increasing my depression medication. You know depression is really a side effect of multiple sclerosis. But of course it would be.

It’s so bad that I actually left a recent MS self-help meeting feeling worse, because I was the most disable one there. Meaning, although they all had valid complaints, at least they could get up and walk out. I had the nerve to judge them and that made me feel horrible.

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It seems as if once again I’m assuming that if you can walk you must be happy. From down here in my wheelchair it seems that has to be true. Right?

So I’m going to see my psychiatrist next week. Hopefully, it will be as simple as him writing a new prescription.

Hopefully.

36

Small Victories

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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.

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