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

Monday, June 08, 2009

Hating the MS Today

I am feeling physically awesome. I'm back on the Rebif and go in tomorrow for my monthly solumedrol infusion (which always does wonders for my energy level). Although there are a couple new lesions, my neuro has decided that none of them are active so we can continue my current course of treatment.

So why the ill will to my illness? It has just occurred to me that my relationship may have ended because of the MS.

He's a good guy and would, no doubt, deny it. He may not even KNOW that that is the reason. I can't help thinking, though, that, when we talked about the future before I was diagnosed, he wanted to move in with me...someday. But, when we spoke about it a year and a half later, he was still not ready, couldn't guarantee that he would ever be ready, and wasn't even sure that's what he wanted anymore. Because I KNEW that's what I wanted and couldn't lie to myself or him about it, the relationship ended.

But was MS the root cause? Whether or not that's true, the relationship ended for a reason, I know. And, if he did break up with me because he was too scared to commit to someone with a chronic and POTENTIALLY progressive illness, then he is not the right guy for me. I know that.

I also know that he loved me, to the best of his ability. So, what does that mean for the next guy? I could choose to keep my MS a secret until I am sure that he is someone that I want to stick around. We fall in love and then SHABAM! When he finds out about the MS, he could drop me like a hot potato.

Or, I could be honest from the very beginning and disclose the MS on our first date just to rule out anyone who can't handle it. But then, he could see me as a damsel in distress; a sickly, defective, needy individual. I could end up with someone who wants to rescue me, or take care of me, instead of someone who sees me as a capable equal who does not NEED him but instead, chooses to share my life with him.

MS sucks and it should only be given to really awful people who are in steady relationships with a commitment for years and years and years. MS should be a disease that only inflicts really old, mean, married people who do not believe in divorce.

Ok. The funny thing is that I am still not dating...consciously, purposely. I am not looking. I am not putting out to the Universe that I want to date...but no one is exactly ASKING me out either. I am working on myself right now with my sponsor and my higher power.

So, what's the problem? I'm lonely and sad. I am missing the relationship and wishing things were different. Breaking up is hard to do but being the break-up-ee really, really sucks. I feel sad and powerless but also pissed and confused....and still sad.

Better to be pissed at MS, don't you think?

7 comments:

MS. MEJune 8, 2009 at 8:32 PM
I am so glad that my last relationship had already ended when I got my diagnosis. I think my ex had a serious problem with any type of "weakness" and had already seen me through numerous trips to the docs/hospitals that I now know were MS related. I can't imagine what it would be like to be with her now, going through all the weakness that this lovely disease brings each day.

Course, I was very scared going on the first date with my partner and was determined not to tell her (or anyone else I was dating) until it had been going great for a while. Well, towards the middle of dinner on that first date she mentions her chronic stomach condition and that led right into my chronic nerve condition. There were a lot more things that connected us but that weight lifted off my shoulders made it easier for me to be myself. Good luck and get out there whenever YOU feel comfortable. It's always when you aren't looking that you get hit over the head anyways!!
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UnknownJune 8, 2009 at 9:24 PM
My boyfriend told me he had MS just over 1 month into our relationship, although I already knew because I had googled him and read a piece he had written about his diagnosis! Once I read this, I knew he would tell me when he was ready. I was not upset that he didn't tell me earlier - he told me when we both knew this was likely a long-term thing and once he felt comfortable enough.

To be honest, I have read your blog and wondered a long time ago how comfortable your boyfriend was with MS and why you had not touched on that when you wrote about your breakup. Only he can say for sure what effect it had on him, but you might want to go back and read some of your past posts with this new perspective.
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the queenJune 8, 2009 at 9:51 PM
I think I've read 50% of relationships fail after a diagnosis. I think this means you were one of the 50% and now you are due for a keeper. The next guy won't be deluded. Not deluded about you, but deluded that he'll never get ill. Everyone. gets. ill. I say find a guy with Type I diabetes or something else he knows how to cope with. And I feel sorry for your ex. He's missing out.
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AnonymousJune 8, 2009 at 10:02 PM
there is someone for you julie. read the book the breakdown lane by jacquline mitchard. it touches on ms and the breakup of her marriage and her new love. the queen is right everyone gets ill. your ex isn't right for you and better you to find ut now before you may have actually needed him.. but i am sure you have heard all this before or told yourself this. it will all work out! i am rooting for ya!
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ErinJune 9, 2009 at 8:56 AM
I know we've emailed back and forth about this stuff. I took a poll. Are you ready for this? Everyone said that they'd date someone with MS over someone with kids from a previous relationship (outside of one person who said they'd date someone with MS as long as the disease didn't "have" them---meaning wallowing in pity). I was shocked to hear that. I asked them why, and everyone said the same thing---MS isn't like it was 20 years ago. My poll was random and included men and women from all age groups---some with kids who are divorced.

"The Queen" is right in the whole 50% of relationships fail after a diagnosis---I read that, too, and it scared me.

And I agree that MS should only be given to horrible people. However, horrible people probably aren't going to leave an impression on society as us crazy type A people with MS.
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Julie M. BakerJune 11, 2009 at 11:18 AM
Thanks, everyone. I'm just going to keep doing all this self-care crap so when that other 50% guy comes along, I'll be ready. :-)
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Jeff PileJune 11, 2009 at 5:22 PM
Man, I am sorry to hear that. Luckily I have been with my girlfriend almost 3 years and she has been nothing but supportive since I was diagnosed in January. And get this, SHE was diagnosed with MS about 6 weeks ago! How crazy is that!
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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

Monday, June 08, 2009

Hating the MS Today

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

Monday, June 08, 2009

Hating the MS Today

7 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