The journey of finding myself and living with M.S.

For many years I’ve been prone to respective motion injuries, I had always thought it was because of a high tolerance to pain, I didn’t think much about it at the time. Because I would go to physical therapy learning ways of preventing it from becoming a problem again, I asked questions so I could learn different ways of doing the same things by using different muscles groups, so I could fix problems before it got bad again. Preferring not to hurt myself I prevented needing to go to a Doctor unless absolutely necessary they always seemed to need to do more tests and I’ve always hated tests.   

I had been having problems with my right leg and my body for a few years I had been blowing it off as just getting older. But in July of 2001 I wasn’t bouncing back anymore it became unmanageable and my body wasn’t doing what I’d asked. This felt especially strange for me. My body was the one piece of my life of which I had always been in control of until now. Before I could always push past whatever aches and pains I had to get the job done. So I had decided it was time to see my doctor.

When I finally told my partner Jane, my right leg wasn’t working, as it should, she told me I needed to tell the doctor everything. So together we made a list. I was tripping over nothing or mis-stepping. My right leg was tired and heavy. I was seeing two of everything then Jane added, “That’s been true for as long as I’ve known you and that’s 7 years.” I was dropping things and losing my grip. After sitting down following a hard day of work, I found that when I tried to get up, my legs didn’t want to work. I had to lift myself up with my arms.

With the list in hand I told my doctor everything knowing it’s harder to diagnose a problem if I wasn’t honest about what I’m feeling. He ordered blood tests and an MRI of my head. I went back to get the test results, he told me the blood tests were fine but the MRI wasn’t. He told me I’ve scheduled you to see a neurologist who’ll be able to find out what wrong. This started me thinking what could it be? I could think of only two things either were good, this I kept to myself I didn’t want to worry about it until I got it from the doctor.

The neurologist ran more blood tests, did a spinal tap, and ordered steroid treatments. He told me, “Now don’t go home thinking you have M.S.” Now I’m sorry but I’m not stupid. I knew that Multiply Sclerosis is one of the only autoimmune diseases that even, without a full diagnosis steroids couldn’t hurt. But that’s exactly what I knew I had. 

September 12^th, I went to see the neurologist. He told me, “You have M.S.” I said, “I knew that, so what’s next?” He gave me a strange look and asked, “How did you know?” After the tests and the initiation of the steroid treatment, it was the only logical conclusion it could to be. I don’t think he liked my snide comments because after that I could only get appointments with his physician’s assistant.

After 3 months, I got a new neurologist, one with whom I had confidence in and didn’t treat me like a fool. The doctor and I went over all my medical records and he told me. My M.S. had been misdiagnosed for over 20 years. After more tests, I learned that the M.S. was now progressive. I was on Copaxsin because it helped with the cognitive loss and fatigue. The doctor didn’t change my record to reflect that I was progressive. If he had my heath insurance would not have covered the prescription cost. After I stopped working, the Copaxsin was stopped.

Now before I continue with the rest of this. I want you to understand that M.S. has forced me to change how I process information. Before M.S. if I wanted to do anything my body and brain worked as a team and it was easy. Now it’s more complicated. I have to plan out everything step by step. First, I ask my brain what muscles are you able to talk to, then I give them a test and most of the time, they don’t get it right the first time. So I talk to my body and my brain, until they do what I ask them to. “No, I’m not crazy”, let me explain.

It’s a necessity with M.S. because you get many scars in the brain and on the spinal cord. This makes it difficult to get messages from the brain to the muscles. This takes time and it’s a two-way street, so the muscles tell the brain “I’m done,” at times some of that message don’t make it, so one muscle will keep working when the rest of them have stopped. This becomes very painful, so in my head I’m screaming and yelling and swearing for everyone to get back on the same page, sooner or later the message will get through or the muscle will fatigue so it won’t work at all for some time. At the same time I need to process information about the list of tasks to be done, my physical limitations, pain and confusion, and knowing that fatigue is going to be a factor. I need to process all this into how I get what I want done within my limits. How many breaks will I need so I don’t hurt myself? I have to listen to what my body is telling me. I can’t let myself get distracted. If I don’t focus on these factors, I’ll end up not getting done before my body gives out. Like everyone else, I prefer to finish what I start. 

Since my diagnosis, I have learned so much about myself. It’s a journey that so far has taken me to the deep wells of self-pity and self-doubt and back to the realization that I’m willing to do the work. I know that I have M.S., but M.S. will never define who I am or what I’m capable of. In spite of how some people may believe M.S. has changed me, I will always be myself. I refuse to allow M.S. to get in the way of living my life it can’t take my joy, of living and loving with all the wonders living life has yet to show me. I will keep my faith in goodness and light. I don’t need pity, just understanding.

At times words are used that I detest, like “can’t,” “shouldn’t,” or “impossible.” These words bothered me a lot less before I found out I have M.S. Now when I hear these words in reference to me, it’s so painfully clear to me that whomever is speaking does not really know me at all. Do they think M.S. could change who I am? I say, “Hell No!” I’m still as tenacious as ever, with the ability to push past pain and almost anything or anyone that tries to get in the way of being myself. I know I have limitations because I test them all the time, just to see if they have changed. I have learned that with patience, persistence, and staying within my limitations, I can do almost anything I put my mind to. If given the time, I will get it done.

I have always tried to be a positive person. With a “Can Do Attitude.” I try not to judge others for what they are able or unable to do. So why do they judge me? I admit that I’m slow to ask for help when I need it because, it makes me feel weak I work on that part all the time. Help when it’s given out of pity is not help. Random acts of kindness, however, are always welcome. Others making judgments about what I’m capable of doing is never going to sit well with me. I want to be allowed to fail and sometimes I do, just like everyone else.

Please just trust me to know what my own abilities are. If I don’t feel safe or I’m unsure of myself, I will not try to do things that might hurt me or anyone else. If I exceed expectations, and I might, don’t tell me what I shouldn’t have done. Tell me how amazing it is that I did it. Praise helps me maintain my self-esteem. Making me feel good about what I’m able to do instead of pointing out what I am unable to do. That’s always the right thing to do, don’t you agree?

I work hard at keeping my body working by using my muscles, stretching to keep them loose and flexible. It’s true what is said, “If you don’t use them, you’ll lose them.” So I work my muscles because I have seen what happens if I don’t. The longer I can keep them working, the longer I can remain as mobile as possible. 

I’ve learned over time that I’ll lose a muscle here and there, but not whole muscle groups. If all the muscles that still work are flexible, I can adjust and the loss isn’t so bad. The muscles that work have to work harder and I fatigue faster. I continue to adjust to new limits. I’ve never cared too much for change, but with M.S. I’ve learned that now it’s a necessity. Change still doesn’t come easily for me. I prefer to call changes “adjustments”. That word works better for me.

My Mother and family love to use clichés. When I was young this was how all lessons were learned. They were easy to remember. Now I use them all the time. I’m a patient person with others but not always with myself. There are many clichés I use that help me slow down and think: Good things come to those who wait and work smarter, not harder. I stop and listen to my body. I work with it and do more with less to get the job done. I’ll break down complicated job into steps I’ll do one step at a time until it’s finished. I’ve learned that working this way makes it easier, because I tend to stay within my limits, I’ll finish the job faster, and I don’t get detracted as easily.

It’s hard for me to accept help. A big part of this is who is offering the help and why. Sometimes I feel people are only offering it because they think they should, not because they want to. It’s kind of like when someone says to you, “Hi, how are you feeling or doing?” people don’t really want you to tell them. It’s just an expression most people use as a greeting. Most of the time I answer with “I’m okay, how are you?” we’ll make small talk for a bit and at the end we say, “Have a nice day.” It’s just an expression we all use but you can tell if someone really means it or not.

It seems people who don’t know I have M.S. treat me better than people who do. It’s hard for me to understand, people who know me are the last people who I think would have reasons to doubt me. When someone I don’t know well asks me if I’ve hurt my leg, I tell them “No, I have M.S. and it doesn’t work well.” They say “Oh my” or something like that. I’ll say “It’s no big deal” and they accept that. Why can’t the people closest to me stop telling me what I can’t or shouldn’t do? I know most of them mean well, and do it out of love for me I do understand that. Now there are a few, who are doing it as a way of trying to control me. By thinking they know what’s best for me. Anyone who thinks they know me better than I do. About what’s best for me is just dumb as a bug on a rug! Life is too short to live it in a box, and certainly not one someone else has made for me. If you knew me at all, you’d know I would never stand for that. And if I do, please shoot me, because I must be brain dead! 

I have been very lucky to have people in my life who haven’t allowed me to settle for less than my best. Any job worth doing is worth doing right the first time. I’ve learned that by not allowing others to decide what I’m capable of doing. Allows me to accomplish more, by just trying and doing the best I can. By thinking it out, working within myself and taking the time to do it right. Being patient with myself is harder than being persistent. This I come by naturally. Ask my mother because I got it from her.

It has taken me 46 years to become the person I am today I have made many mistakes along the way. I take no pride in the fact that I have hurt others along the way. I’m very sorry I was young and dumb and at times thoughtless of how my actions would hurt people. Hopefully you will understand that I have changed and am still learning what it takes to be myself.

The people who have inspired me are all the people I have known or read about or heard stories about. To put it simply after years of paying attention to the world around me, after making so many bad choices of my own, and trying to be what other people wanted me to be. I realized that “if I don’t learn from history I’m doomed to repeat it”. So this is when I decided to start my journey of “being truly honest with myself”. My core beliefs did not change much.

My mother has given me an arsenal of tools to use to help me become the person I want and need to be. So I could be my own person. She would always tell me; “ Mary, you first need to love yourself, before you can truly love anyone else. If you don’t, you will never be the wonderful person I know you can be. To be yourself an independent unique individual, I didn’t raise you to be just like me or anyone for that matter, all I ever wanted was for you to be your own person.” These words from her took me a long time to understand what they meant, and how to use the arsenal of tools she has given me. Now I know the only one I can control is myself, I don’t need anyone to tell me right from wrong because I already know.

I have a lot of baggage, and I’m no great prize. Now before you say I’m wrong, understand that I know me better than anyone and I’m painfully honest with myself. I have no delusions, I truly am a realist, and my failings are many and plain to see, even if you are blind. You can’t kid a kidder. Like my mother always tells me,  “you just do the best you can with what you’ve got.” This truly is a valuable lesson one that I wish everyone could learn and understand.

CHAPTER TWO

My feelings about how I do what I do

 Everyone finds ways of dealing with life’s hardships and things that happen as part of living. Life changing events happen to everyone. Good or bad, how each person chooses to react. Is a choice that isn’t right or wrong it’s just how each person handles change or adversity.

I’m going to attempt to explain, what my feelings are about how I handle my life with M.S. I’m not accustom to sharing my feelings in respect to events that hurt me. I prefer to talk about events in my life, as history I can’t be hurt by history. However my feeling could be judged that’s why I tend to down play my feelings and keep it to the basic ones. Without elaborating on just how deeply it affected me, how it made me question my ability to handle how painful and scary it was. I tend not to talk about anything, until I’ve gotten a handle on my own emotions first. Some acts of self-preservation are automatic. That’s why this is hard for me. I’ll do my best to be as honest as I’m able. Without feeling the only thing you’ll feel for me is pity. That isn’t why I’m writing this.

Learning I have M.S. was a change in my life I didn’t see coming. How deeply devastating and demoralized I felt is something I’ve only shared with my Mother until now. Allowing anyone to become aware of how insecure and vulnerable I feel isn’t something I’m comfortable sharing.

I was ashamed that for one minute thinking of ending my life was an option. I decided it wasn’t an option and to confirm this I had a nightmare. I was in heaven standing next to the fire pit I had a rope tied to my ankle with me were all my mothers family they said how dare you even think of doing that to your mother and one by one each one pushed me into the fire and pulled me out and healed me, I tried to tell them I’m not selfish enough to do that. When I woke I was absolutely positive I’d made the right decision. 

Realizing how much my life had already changed, it definitely challenged my view of what I thought quality of life meant to me. Time became my first enemy, knowing how much I’ve already lost. At first I was able to push passed the pain. As time went by it got harder to do that, I needed to make adjustments on how I did everything and the way I did it as well. That was a bit annoying at first, over time I watched as more of my abilities diminished. I became so extremely irritated at myself. For my inability to get my body to do what I wanted it to, now I was on my last nerve and it was way too small for the pressure I put on it.

I didn’t want to lose any more of my abilities to M.S. I had to find a way to prevent it from taking anything else from me. That decision was a huge mistake on my part at the time. Because I wasn’t in control of what M.S. was going to try and then take from me next.

No wonder I was getting nowhere, I got so mad at myself for being a dope that I couldn’t see this fight needed tools not weapons. I’ve had the tools my mother has giving me and living had given me more. I needed to figure out how to use the right tools so I could live through the battles I would lose. Knowing the war could never really be lost unless I quit or gave up and I’m too tenacious to do either. So I’ll continue to work with what I’ve got and do the best I can, with what I have to work with and some days that isn’t much.

Like a good soldier it was time to review my mission plan, as a soldier the objective is to accomplish my mission. My mission is to continue being my self no matter what M.S. takes from me. Knowing I wasn’t in control of what it would take, I needed to get my head around this fact first. Regaining control of my reactions and emotions. Then learning that fighting wasn’t going to help accomplish my mission, because I wouldn’t be fighting M.S. but myself instead. I needed to organize the different battles I needed to handle all at the same time needing the ability to adapt to changes I have no control of. Then find a way to minimize the effects of the changes to my abilities that each battle would take and still complete my mission.

The first battle was my fear. Fear is the mind killer, because I defeat myself before I start, it sounds like a simple fix but not so much. Fear is an emotion and that makes it a bit tricky, because it comes from my own doubts about my ability to handle what I attempting to do. My heart is the only thing I know with the ability to calm my fears. 

The second battle was my inability to get my body to do what I asked. I needed to slow down and focus on why my body wasn’t listening. I realized I was asking the question the wrong way. This changed my approach on how I would do everything realizing I had to learn new ways of doing everything. It was upsetting at first however it was a necessity to adapt. So I started flexing the muscle between my ears. Now I must think though everything before I start. This was so frustrating having to do this each and every time, but in time it became automatic. I’m able to work though or around most of the losses some of the time. Learning to be patience with myself until my body is able to do what I’m asking is still irritating. Learning new ways of resting my body and exercising my mind was hard at first but now I really am able to do more with less it just takes longer. The benefits of doing it this way is I’m able to focus and it brings order to my thoughts cutting down on my frustration.

I must keep my mind and body healthy I have to work at keeping what I have working, by staying flexible though stretching, deep breathing and deep meditation exercises it’s how I start and end each day. Sometimes it’s depressing all the things I must do, to keep what I have knowing, that no matter what I do M.S. is still going to keep taking more of my abilities away. I pay better attention to my body now I wish I’d have started doing that sooner but if wishes were rainbows what’s all I’d ever see.

Understanding no matter what I did Multiple Sclerosis would be, an 800-pound gorilla in my head that I have zero control of. This meant I needed to be realistic in what my goals were. I needed to be painful honest with myself and face the truth. About that M.S. is capable of doing to me and admitting to myself I have no control over what it takes from me. I realized the only piece I have always been in control of is my reaction. This became my starting point I would build on.

I needed to continue to live without regret and letting everyone know how much I cared about them, holding nothing back, making sure anything I felt I needed to say was said. So I applied this same process to M.S. By not regretting what I’ve lost. Not worrying about what M.S. would take until it happens. Understanding that I’m not going to accomplish everything I want to do before I lose the ability to do so. Remembering to do the best I can with what I got. I needed to make adjustments.

Learning my self-esteem was based on my physical ability to do things, was the first of many adjustments I needed to make. Taking a hard look at what was important and dumping the rest. Letting the pain and hurt from my past fade, because nothing I could do now would change the past, I needed to let the past be about lessons learned. Dwelling on the past however may affect the present so letting go was my only acceptable option. 

Acknowledging that everything that’s happened in my life, has taught me, I’m only in control of my reactions. The events that have changed the direction and focus of my life didn’t matter if it was good or bad, what mattered was did I let them be stumbling blocks or did I turn them into stepping-stones. Understanding this and putting my past experiences into perspective, I stopped attempting to wish away the painful and hurtful events in my life, because without them I wouldn’t be who I am today.

In hindsight the only thing I would change, is the pain I caused I can’t change the past, I can only learn from it. This is still harder to let go of because I know I did it to hurt someone. It’s much harder to forgive myself than to forgive others. I had to let this go, if I hadn’t I would have gotten caught again in the lope of should’ve, could’ve or would’ve. I had to let go and let God be my judge.

Being aware of mistakes, serves as a reminder to think before I speak. Living in the present, knowing my future is about the choices I’ll make from this point on. Using all the knowledge I’ve gained by being totally honest with myself. I had already planned out the rest of my life for the most part, this was something new for me, and needless to say I needed to adjust all of my plans. Now I can’t really plan my future. Because I had no idea what my abilities would be, I had to keep my options open, I needed to be able to roll with the punches that M.S. would deliver. Not being in control is a scary place and one I’m not familiar with, it makes me extremely uncomfortable adapt or die (not an option). Another adjustment I needed to make so I have, I’m still uncomfortable with this but the alternative is unacceptable!

I saw how superficial I’ve been this needed to be adjusted so as I found out what I needed I realized, I didn’t want more than I needed, this was huge for me. No longer did I feel it was necessary for anyone to approve of how I choose to live my life, my choices are based on my needs. I stopped worrying what people thought because I have no control of that. The only person I have to live with is myself! Now I’ll make changes that I feel are necessary because change is about growth.

I know people think I’m doing fairly well handling my M.S. and that’s what I want everyone to think. To be honest it’s in my best interest when people see that I’m in pain, I can see that it hurts them but I can’t worry about that. I know it’s hard seeing anyone in pain but try to understand, I know the price it’s going to cost me to do the things I want to do. I’m willing to pay the price. I do care about people’s feelings I just can’t let it stop me from doing what I need and enjoy doing. 

I do all I can to minimize the trouble I’ll have doing the things I enjoy. My M.S. is progressing faster so I’ll plan ahead if I want to do something that will be hard on me, and I really want to do it. Resting for a few days before hand this way I’m ready and the impact will only take a day or so to recover from. I’ll put off what I need to do until after I’m done doing what I want. I do need help doing some of the things I want to do, because without help I’m not able to. I’m okay if I don’t get to do everything I want, because that happens to everyone.

At times I’m so angry at what M.S. is taking from me. I just want to vent my feelings without being judged or misunderstood. I need to give a voice to my anger and frustration. About my inability to control that M.S. is taking from me so I can hear if it has value, most of the time it doesn’t. It helps me to understand what M.S. takes from me isn’t within my control but how I handle it is and sometimes I forget that and I get a touch reactionary and that’s absolutely within my control.

M.S. isn’t something I want to define who I am. The way I feel it’s about my state of mind and the choices I make. I’ve lost the ability to do some of the things I loved doing. Now I’ve found other things to replace them adjusting to what my abilities are and adapting so I’m still putting as much love into living as I can. I can’t and won’t live my life regretting, that I may have missed out on because I didn’t do all I could when I was able. Instead I choose to focus on what I’m able to do in spite of what M.S. has taken from me. At times it seems like M.S. is trying to destroy my joy of living my life. I refuse to give into self-doubt and self-pity in my past I would have let myself do that. Not now living life no matter the hand I’m dealt is too great an opportunity for me to quit doing the best I can with what I’ve got. Love is a very powerful emotion many wonderful things have been accomplished because of unconditional love. Love comes from the heart and that encompasses the soul. True or not it’s how I feel. Knowing that for me without love I wouldn’t still be here.

Looking at M.S. as an obstacle put in my way, to tests my patience and tolerance! I try hard not to let it get me down but of course sometimes it does, so I get mad at it. Because anger can be a useful tool if it’s controlled properly and given a constructive direction. When it stops being useful I must let go of it. If I don’t it becomes a weapon I’ll use to hurt myself, I really don’t need that so I’ll find a way to let it go and move on (sometimes that’s easier said than done). 

At times I get so negative and feeling sorry for myself when I give into that, I don’t even like being around me. Since I can’t jump out of my skin even though some days I’d like to. Stopping then realizing this isn’t helping anything. Then I’ll pick myself up dust my pity party off. Finding one positive reason why I don’t need to feel this way, and I hold on to it and look around and find more, then I’ll see just how silly I was wasting my energy on self-pity life is too short to waste it.

I’ll admit I’m slow to ask for help I want to be allowed to try doing it for myself first then if I want help or need help I’ll ask for it. I am capable of making judgments about what my abilities are. I don’t do anything I’m not absolutely sure I’m capable of doing safely. I do over do it that’s true but that’s my choice. I know the consequences of doing that and I’m the one who pays the price for my actions! I want you to try seeing it from my point of view. I’m doing things that make me happy and that I enjoy, I’ll over do it that’s true. Please try being understanding instead of judgmental. I’m trying to continue doing the things that make me happy and feeling that I’m in control of my life even though it’s not always the truth.

I get tired of listening to people telling me, what I shouldn’t be doing and that it’s just to hard on me, the granddaddy of them all is “you can’t do that it’s impossible for you ”. Why I get so tired of hearing that crap is, when it’s said the first time. I’ll explain why I can and how I make it easier for me and that the impossible just takes longer! My problem is I have to explain it over and over again. Of course it gets on my very last nerve reserved just for assholes! It hurts me when I feel I’m not trusted enough to know what I’m capable of doing or incapable of doing. Being the same tenacious person I’ve always been. The only difference now is doing what I want just take longer.

There has only been one person who I would allow telling me what to do and that’s my Mother and even she stopped doing it many years ago. Now she’ll tells me: “If you think I’ll worry about anything your going to do, just tell me when you’re done.” I’m no quitter and I’m not about to change because of M.S. the only people who don’t seem to question what I’m capable of, are my family and their children. 

Pain has become a 24/7 kind of thing now but that doesn’t mean I’m willing to sit on my ass watching life happen without me. I do count on people to help me, because M.S. has taken my ability to do it for myself, I’m just admitting that something’s aren’t within my abilities any longer, I’m honest with myself about my limitations, of course I don’t like the fact that I have any but I do. The thing to remember is I’m going to continue making all necessary adjustments needed to remain being what I’ve always been. Self reliant, independent, in control of my choices as long as possible for as long as I’m able and to continuing to be tenacious. Not allowing anyone to attempt to decide what’s in my best interest, because I’m still better at deciding that then anyone trust me. Now if someone does decide to try they’ll learn exactly what the definition of tenacious is, and I will accomplish my mission of being myself!

This is dedicated to my mother Adele K. Mennenga

Without her love, support and encouragement I would have not written this at all. It was on her insistence that I write it down so she became my editor for the most important parts. After finishing it she thought it needed a chapter two about my feeling about having M.S. I had no intention of sharing my feeling with anyone but her. But she asked me to and so I did after I finished it and read it to her she said, “ Now that’s much better. For me it brings together what you do and how you feel about doing all you must do to deal with M.S. making it easier for me to understand. But I still don’t understand where you learned how to handle it all”. Telling her the truth was easy I told her, “ Mom you did the stories you’ve been teaching and telling me all my life, and to do the best I can given the hand I’ve been dealt and I’m trying to do what you’ve always done. The best I can with what I have to work with”.

Written By Mary K. Mennenga

Chief Editor and the only reason I wrote it

My Mom

Adele K. Mennenga