ADAPTING TO A NEW WAY OF LIFE
I learned that the brain is an amazing organ. I don’t think there is anyone who does, or can understand it completely. However, just as a child learns to do things, I too had to learn how to do things that I’d been doing since I was a child.
To this day, almost 16 years later, I still have to do most everything in a way that is not “normal”. ADAPTATION – KEY WORD. It has become a daily routine over the past 4 years now. The adaptation is something I’m very aware of having to do. Once I’ve adapted, it becomes unconscious for the most part. I have learned how to pay attention to the tension of my muscles in my arm, hand and/or fingers for example. By doing so, I know how much pressure is needed to pick up a glass as opposed to a cotton ball. My brain has learned how to do this so that I use the right amount of pressure so as not to crush and/or drop what I’m holding. Although, if I hold anything for any length of time, like the steering wheel, I am crushing it because my had clenches very tightly. Same with holding a pen, it is very difficult to hold for very long. I have learned to concentrate on holding something so that I don’t just let go of it without wanting to. I say a “mantra” in my head when I walk much as I did in those early days in the hospital when trying to reach for something. “Left foot, right foot, straight, walk, left foot, right foot, turn etc… I must always be looking at the ground in order to walk at all. There are times when walking that my left arm will want to curl into my body, my arms don’t sway naturally when I walk, they pretty much just hang because again, my brain still doesn’t know that they are there I guess.
The reason for the mantra and looking at the ground is due to Parietal Indifference. It is the inability of the brain to recognize that which it cannot see. As well as that which it is not currently using. Sounds strange huh? It is believe me. I don’t recognize that I’m standing-other than I know I’m upright. Because I (my brain) doesn’t know there is ground unless it sees it. This concept carries through to most tasks. Some require little effort, some require much more. Walking and stairs are the most difficult. Going down stairs being the hardest. I’m sure because it also requires more coordination. At times when I’ve picked something up, I may have to think about what to do with it. I know it all sounds strange. All of this happens, in a split second for the most part. As I said, the brain is an amazing organ!
I still am not always able to just reach for something unless I look at it first even if I know exactly where it is. I may have to think about what to do with it once I’ve gotten it. I have to be able to see stairs in order to go up or down them. Changing direction while walking or even turning my head will throw me off balance. If someone comes up to hug me, and I am not ready for it, this can throw me off balance.
Walking is not a natural thing anymore. It takes concentration. I have to be conscious of what I’m doing in order to walk straight, not fall over or stumble. Mostly it is unconscious. But there are times when it is not and it does require me to actively be doing that “mantra”. I cannot run at all or walk quickly anymore. It is too hard to keep the legs knowing what they are doing so that I don’t trip and fall.
If my eyes are closed, I have no idea where any part of my body is or what position it’s in. Again, I can’t see it, so the brain has no concept of it existing. If I move it, I’ll know where it is, otherwise not. There are times if I’m not using my arm, that it will hang limp or want to lay against my body – again – it’s not being used, the brain doesn’t know it’s there and ignores it. All it takes, once I notice, is to move it.
My left wrist still curls under to some extent and my hand becomes misshapen at times when I’m not using it. The fine motor movements in my hands and fingers will never be normal. Working with anything small is very difficult. I can no longer “write”. I print. I can only do so for a short period of time. Anything small that I try to hold for any length of time becomes a problem. My hand will still want to crush it, or I will drop it if I don’t concentrate. Sometimes this is true when holding larger things as well. My sense of balance is very bad. I cannot stand on one foot. I cannot walk toe-to-toe in a straight line without looking as though I’m drunk and almost falling over. With my eyes closed, it is even harder to maintain my balance.
I have very little feeling in any part of my body. This too is hard to explain. It is a light sensory touch thing more than no feeling at all. If you stick me with a sharp object, yeah, I’ll feel it. There are times when I may cut myself and don’t know it until I see the blood. It takes awhile for the sensation to be realized by the brain. Because of this I am able to touch very hot things before I realize they are hot. Sometimes good, sometimes not. That’s how I’ve gotten 3rd degree burns before! My hands are probably the least sensitive part of my body.
I tire very easily as do all MS patients due to a decreased amount of energy. Because the brain is working overtime to accomplish each task, fatigue is a big factor. The amount of energy that is spent to do anything is much more than the average person. Obviously, the more severe the damage is the more energy that is required to accomplish a task. There are times when simply getting up from a chair takes quite a bit of coaxing and thought to be able to do it.
My energy level is probably a little more than half of the average person when I’m feeling good. Although, because I’m very obstinate and bull-headed, you’d be amazed at what I can do with that amount of energy.
Many times people will say, “Rae, what did you do? Why are you limping?” Well, to MS patients, we know we are not limping. What we are doing is actually throwing our leg. Because the foot “drops”, you have to use a throwing motion to bring the leg forward in order to lift your foot enough to get it off the ground. This happens anytime that I get tired, sick, worn down or hot.
WHAT DOES THIS ALL MEAN?
This is all permanent damage to my CNS and spinal cord. There are times it gets worse. There are times when I must think about every little move. There are things I cannot do anymore, and never will be able to. If I get tired, get a cold, when it’s hot & humid, or during an attack, any or all of these symptoms can flare up and become problematic. Being around any kind of infection is a dangerous thing. Because as I said in the introductory page, the immune system is affected. A common cold will be much harder for me to get over and will also take a whole lot more out of me than it does others. Anything that compromises the immune system, can and will, make any old symptoms flare up.
My memory has gotten very bad. My attention span and concentration level are very short. I cannot do too many things at once or I get confused. I cannot think of what I want to say a lot of the time. I have trouble using the right word(s), and what I say comes out as garbage or the wrong meaning because I use the wrong word. Sometimes what I want to say and what I do say, are two entirely different things. I know this ahead of time which accounts for some of the hesitation and stumbling. I know I don’t know where the information is in my head. It’s like having a hard drive with a whole lot of bad sectors on it! You know the information is there, you just can’t get to it.
Many people say, “Oh, I forget all the time too. I stumble over words too.” This is a MOST infuriating thing to hear. Something else you learn with MS is that you begin to know what is the MS and what is not. Obviously I know everyone forgets, everyone stutters from time to time, this is natural. It is virtually impossible to explain what it is that is going on in my head during these times. To know what you are trying to say and for the life of you, you cannot begin to attempt to. So you don’t. You say something else. Or you say nothing at all. The information is there, it’s just a matter of when the old computer will retrieve that information. It may be in a few minutes, it may be in a few weeks! Or it may be never. No matter how I try to explain this to someone, I get, “Oh that happens to everyone.” and there is NOTHING more infuriating let me tell you. Because it isn’t that simple.
You may notice these things, look at me funny, and figure out what it is that I meant to say. Because we all do this from time to time. But were you to spend an entire day with me, you would notice the frequency in which it occurs. It is much more apparent when I have to talk about something that requires using the correct words and/or thoughts. Such as at work, or were I actually telling you all that I am here. This is when the hesitation and/or complete blank, or “nonsense” can come out of my mouth. I have learned to make a joke out of it, to laugh it off. Inside, I am not laughing. I imagine it is quite similar to what people with Alzheimers experience. It is frightening as I imagine I am only 43, what will happen as I get older?
Recent studies have shown that Cognitive Dysfunction is a very real part of MS. This is what I have been experiencing more and move over the last few years. It is also what causes much of the above. At least it’s got a name now. Makes me feel a little better. There was a time when I began thinking I was becoming a hypochondriac with all of the symptoms I was experiencing. I was tested again last year, and found to have the most trouble with Cognitive Dysfunction. I was also diagnosed with ADOCD (Attention Deficit Obsessive Compulsive Disorder) 11 years ago. The AD is the more predominant of the two. All of this adds up sometimes creating a little havoc.
HOW THIS ALL AFFECTS MY LIFE
The Cognitive Dysfunction and AD are perhaps the hardest to “live with”. To forget what you’re saying or doing while you are doing it is very frustrating. As I said, knowing something, but for the life of you, you simply cannot retrieve the information at will. It is the consistency of if that is so frustrating. It isn’t a once in a while thing. It is all the time. This is what people don’t understand. This is also what tells me that it isn’t the “normal” thing that people experience. There is nothing worse than being asked a question that you really should know, like the name of your doctor? And you draw a complete blank. Mundane kinds of questions like this that go unanswered make you feel rather stupid at times. Also very frustrating and maddening. If I go to see a new doctor, many times I have to bring notes just so that I can remember names, my insurance company name, medical history etc.. Again, things you would just normally know.
Driving? There are times that I forget “how to” drive or that I am driving. No, I’m not talking about the “gee, how did I get here? I don’t remember driving this far.” kind of thing. I mean literally forgetting how to drive, the skills that it takes. The Cognitive Dysfuntion, along with the other damage to the brain, causes me to see something, but not react to it immediately. It is then, that I have to literally tell myself to move my foot, brake, turn the wheel, whatever the case may be. Makes you want to drive with me huh? Fortunately, the time frame is very quick. I realize it within a second or two. There have been times when it has been close however. Something else at the back of my mind – how much longer will I be able to drive? The other fortunate thing is, it isn’t all the time at this point. Some days are worse than others, while some days I am fine. It all depends on how I’m feeling, if I’m having an attack it becomes more of a problem. If I have something on my mind, the AD then adds to it making it that much harder because my mind wanders way too much. In reality, what I have discovered is, I am almost constantly instructing my brain if you will, what to do, when to do it and how to do it, all day, everyday. I’m not really aware that I am doing this-again, these things become unconscious. The hard part is, this constant instructing, can at times, cause my brain to just shut down. It is too much information for it to take in at once – it goes on overload. This is what is usually happening in driving situations. Again, thankfully, this is not all the time while driving. I have learned to not allow myself to think about other things as much as possible.
This is not true for every MS patient either. These are things that are part of “me”. I use techniques to remember things like association. No it doesn’t always work, I forget what the association meant! Probably one of the most frustrating things for me at this point is my memory and concentration level – or lack thereof. I’m noticing it more and more, and yes, with age it will get worse. I hate the fact that someone can be talking to me and I’m not even listening. Not because I don’t care or don’t want to, I simply can’t. My mind is somewhere else. I am thinking about many different things all at the same time, but not with any cohesiveness. I don’t have control over it. To know that it is happening and having to fight to listen is more frustrating than I can tell you. I have to force myself to pay attention, and more often than not, I am not successful. Trying to force it, actually makes it more difficult at times.
This also affects my ability to learn new things. I think my interest in designing web sites, in computers and how they work, is a big help. These things force me to constantly learn new things, recall what I have learned thus keeping my mind in an exercised state.
BUT YOU LOOK FINE RAE.. I DON’T GET IT
Much of the lingering damage is NOT something that people can “see”. I’ve explained enough of it to you by now. This is another reason why for some, it is very hard to believe I have MS or have been through what I have. No one but me knows what is going on in my head. You can’t see me saying my mantras to myself. I have gotten very good at looking as though I’m listening when I’m not. You don’t know that what I’ve just said isn’t what I intended to say – unless it’s so obvious by a word I use. You don’t know that I’m struggling to remember something as simple as your name. You can’t see the confusion in my brain when I’m trying to do something with my hands, or trying to piece something together. For the most part, all of my symptoms are not outward ones. Of course I’m thankful for this. I have been able to “overcome” many of the physical difficulties or work around them. I’m not having a whole lot of success with the memory etc.. and it only seems to be getting worse.
The things that I have learned to compensate for, are, as I said, for the most part, unconscious. As I get older, and boy how I hate to admit that, it does become a little harder. It requires more effort more frequently. More things have to become conscious. Each attack I’ve had since the one in 87′ has taken me a little longer to get over. It leaves “a little more behind”. In the spring of 1998, I had a very similar attack to the one in 1987. My doctor said it was just as serious. As far as I was concerned it wasn’t. Nothing ever will be. But neurologically, it was. Yes, I was not in good shape for awhile. But no where near what I was back in 87. I was able to care for myself. So to me, it didn’t seem that extreme. However, it did take quite a few months to get through it. With each subsequent attack, it gets a little harder to get over and bounce back. It begins to take its toll.
The important things are I am able to walk. I am able to take care of myself. I’m able to work in the theatre. I’m able to ride a motorcycle – which I taught myself after having been though all of this. I’m able to go on long trips alone on my bike or by driving. I can use a computer to write (good thing since writing is another passion!). I am able to use power tools. I am a photographer. I hold down a full time job.
Yes, there are days when I have to cut back. There are days I cannot do what I want to do. Summer is a hard time for me to be very active because of the heat and humidity. There are days, weeks or months, that I know I cannot take the chance of riding my motorcycle. I cannot put in the hours or do everything I used to be able to in theatre. I cannot do anything that requires the use of my hands, quickly. Operating some of the controls on my camera is difficult because they are small. Most things require more time to do them than they did before. There are many days that each step I take is a struggle to lift the legs because they are so “heavy” or I am so exhausted. This exhaustion doesn’t necessarily come as a result of doing anything in particular either. It just is.