Maybe I'm Just Lazy: One Woman's Journey Through MS and Life: Not Sleepy Yet

Thursday, September 10, 2009

Not Sleepy Yet

And the post-Solumedrol rant continues...

It's almost midnight and I'm flipping channels and not sleepy. I must turn off the TV and at least go upstairs and read and TRY to fall asleep. My fear is that I will finish Julie and Julia and still not feel sleepy. And, because I am so wired and racy, I won't even truly digest what I'm reading. Do people who take steroids for muscles get like this? My steroids are supposed to stop MS-related inflammations and fatigue so it's probably a different type and I get it via an IV (rather than in a Major League Baseball locker room).

I know someone who takes steroids for muscles. I know he regrets telling me, too, but neither one of us can undo the conversation. If I could fly around the world backwards and turn back time, there are many, many things that would come before that revelation on my "Do Over" list but still...

I'm not sure if he suffers from 'roid rage but I suspect it makes him a little squirrely. He has conversations like the ones I'm having in my head, via facebook and twitter, and in my blog today. I got a lot of work done today, which was nice. The steroid user does, too. And, he has some pretty ripped muscles, too. I do not have that but, then again, I do not spend hours a day (or even a week) in the gym either.

I've been thinking about joining a gym again. I've joined many in the past with different levels of commitment and success and setting up a regular workout routine. I think I have to join WITH someone. The time I was most successful is when X and I went to the gym together in the mornings before work (pre-kids obviously) and a bunch of women friends belonged and worked out in the mornings, too. I loved it. It was social and physical and my workout was done by 8am everyday.

Anyone in the Boston area want to join a gym with me and make a commitment to work out together 3 times a week? In the meantime, I think I want to formalize my current walking and yoga routine. But then again, if I do not and blog about it here, I will feel like a piece of shit...again...if/when I don't stick to it.

Discipline and sticking to healthy habits is not one of my strong suits. Are their any former rebellious bleaders (see previous post for explanation or read Julie on Julia for a definition of that word) out there who are now poster children for staying committed to positive and healthy habits in their lives? I think I need to find a payoff---besides the obvious. I mean, maybe I need to set a goal. That worked when I did the Boston to New York AIDS Ride and the Avon Breast Cancer 3 Day. Maybe I need to figure out what to do next. I hate running and I don't think it would be good for my 45-year old, myelin-challenged body to start. I've been thinking of Pilates but I don't think they have charity Pilates events or competitions. I could go back to bike riding but I am limited by daylight hours and bike paths because of the whole visual impairment thing. Or maybe I need to fall in love with an active person who wants to ride a tandem with me on the back. we could talk and ride and solve all the world's problems while we stay fit and active. In the meantime, the kids and I are definitely going on a bike ride to Pope John Paul park via the bike path with Ruby on her bike and Zane on the tandem-style bike buddy behind me.

I need to find a way to go dancing more, too. I love to dance and it's a very good way to stay fit and feel sexy. I say that in Cambridge there's a dance center with all kinds of cool classes for the fall. Maybe I can start with that commitment. You know, an every Saturday something. I will just have to make sure I have lots of babysitters on deck for the weeks that the kids are not scheduled to go with X and/or he bags because his work comes first. Grrrr.

I could fill the entire screen with a steroid-induced rant about him. Grrrr. But I won't. We have control over so very few things so I am not going to give up control over my focus and energy that easily. I am going to focus on positive people who bring positive things into my life. I need to focus on the solution and not the problem. I need to accept the things I cannot change and change the things I can: namely ME, my attitudes and behaviors.

But right now...I need to go to bed. And, in an effort to not delay that any further, I am not even going to read over and edit this. Spell check is sufficient.

3 comments:

WebsterSeptember 11, 2009 at 2:33 AM
Try to relax Julie, the steroid rush will abate soon enough, and hopefully the benefits will last a long time. What you're taking is NOT the same type of steroid that muscle builders use. Alas. It just puts on water weight, and relieves inflammation, of course.
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AnonymousSeptember 12, 2009 at 9:19 AM
Hi Julie,

Thanks for the doctor advice. She has put me on steroids as well. Last month was my first does and I got zero hour sleep. I just had my second does of steroids on Thursday (the same day as you!). This time, the pharmacy intern suggested taking the (generic version of) Benadryl an hour before bedtime. It really helped. I got 6 hours of sleep this time.

-- Scott
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Julie M. BakerSeptember 12, 2009 at 1:56 PM
Scott,
I sort of forgot about the Benadryl and then I thought I could do it au natural. Not next month. I am going to be smart and take the pill. Thanks for the reminder.
Julie
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MS is Lazy!

I just read this on an MS support group site and it made me feel better about feeling "lazy."

When the myelin covering on the nerves is lost/disappears/whatever it does, the nerves don't conduct brain messages nearly as effectively. It's kind of like the nerves have to find new pathways for the messages from the brain. So the messages are much slower in reaching their destination and it takes more energy, trying to find the right paths. This made a lot of sense to me and helped my not feel so 'lazy'.

The Spoon Story

I would love to give the proper attribution for this story but I have no idea where I found it! I think it may have been posted to an MS community site.

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have MS and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about MS. She came to doctors with me and she saw me walk with a cane. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of MS. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity.

I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have MS”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions.

So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case MS, being in control. She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with, which you wont know until you wake up. To answer your question we’ll start your day with twelve. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out the12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has MS. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon.

I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If my shoulders and back hurt I wont be able to put on a bra. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this. I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons.

I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a virus comes, or a treatment reaction, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so dizzy, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it.

I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared” It’s hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.

I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons."

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say that she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said, “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding MS, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

Maybe I'm Just Lazy: One Woman's Journey Through MS and Life

Thursday, September 10, 2009

Not Sleepy Yet

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Maybe I'm Just Lazy: One Woman's Journey Through MS and Life

Thursday, September 10, 2009

Not Sleepy Yet

3 comments:

Sharing is Nice

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Where are you?

MS Books and Related Titles

MS Blogs

The Facts of MS

Info About MS

Who Gets MS?

MS is Lazy!

Blog Archive

The Spoon Story