There are some symptoms that most of us with MS have.  Most of us have tingling, pins and needles or numbness over some part of our bodies.  These areas expand as the disease progresses.  We have unexplained pain or itching.  Our eyes bother us – double vision, blurred vision, feeling like someone has taken some gauze, very carefully wiped vaseline over it and placed it on our eye.  We have headaches, muscle spasms and our feet are cold.  Many of us suffer bad reflux.  We have little or no control over our bladder and bowel.  Our balance makes a two year old look like a tightrope walker.  By far the worst and most overwhelming symptom for many people is the fatigue.

I could devote chapters to fatigue.  I am not talking about a bit of tired, that will be alleviated with some rest.  I am talking about fatigue so heavy, so all consuming that the effort to chew takes too much concentration for us to manage it without a rest in between each bout of three or four chews.  Thinking requires effort, rational discussion is mammoth and debate totally out of the question.  Many MS sufferers get up, eat breakfast and then settle down for a nice four hour nap.  Fatigue is so debilitating that it robs us of our lives.

So there is a quick run down on the basics of MS. That other thing in the title is something that has actually been around for quite a while but Dr Paolo Zamboni is the person credited with connecting it with MS and perhaps making a treatment that alleviates the worst of the symptoms for many MS patients.

You know, I’d just like to know some people in Perth, Western Australia, with MS.

Fatigue is many things.

Fatigue is…
starting out the day with an energy deficit.
being more tired in the morning than you were the night before.
wanting to cry thinking about a task to be done next week.
not remembering where you put the refrigerator, the car or the kids.
operating at half-speed.
When your limbs feel like concrete
and your brain like cotton candy.
when you cannot go
one more millisecond and have to stop NOW.
when it becomes a major chore
to walk to the mailbox.
knowing no one can really understand
unless they stand in your shoes.
oft times painful.
walking through glue.
Fatigue = Gravity X 2

Fatigue is many things.

Fatigue is a great teacher…
when we must learn to share our burden.
when we must learn to
freely let go
of some of the
control
we prize so dearly.
when we must learn to stop and smell the roses.
when we must learn to love the quiet times.
when we must learn
to let our souls and our bodies lie fallow
waiting for change that will bring new life.
when we can laugh at ourselves.
Fatigue is a great teacher if we can learn it’s lessons.

Fatigue is many things.

j a purcell 10/99

Having Multiple Sclerosis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand Multiple Sclerosis and its effects. Of the people who think they know, many are misinformed. In the spirit of informing those who wish to understand… these are the things I would like you to understand about me before you judge me…

Please understand that just because I have Multiple Sclerosis doesn’t mean I am not still a human being. Some days I spend in extreme exhaustion. At times, sleeping for fourteen hours is all that will alleviate my symptoms. I get so tired. These emotions are all very strong and powerful. If you talk to me, and I might not seem like much fun to be with, remember I am still me. I am just stuck inside this body. I still worry about work, home life, my family and friends.

Please understand that Multiple Sclerosis is unpredictable. One day I may be able to do anything, while the next I may have trouble getting out of bed. Please don’t attack me when I’m having a bad day by saying, “But you did it before!!” Please understand that sometimes being able to stand for ten minutes doesn’t necessarily mean I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday, doesn’t mean I will be able to do the same today. This disease gets more confusing.

Multiple Sclerosis isn’t all in my head, and it isn’t contagious. Nobody ever died from Multiple Sclerosis though they might have wished they could on really bad days. I can’t control how often I feel good or how often I feel terrible. Multiple Sclerosis is a condition with lots of different kinds of symptoms. There is no cure for Multiple Sclerosis, and it won’t go away. If I am functioning normally, I am having a good day. I can have good days, weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flare ups and suddenly become more sensitive mentally and physically. Other times there may be no warning. I may just suddenly feel awful. I can’t warn you when this is going to happen because there isn’t any way for me to know. Sometimes this is a real downer, and I’m sorry. If I seem touchy at times, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you understand. I have been and am still going through a lot. Multiple Sclerosis is hard for you to understand unless you have had it. It wreaks havoc on the body and mind. It is exhausting and I am doing my best to cope with this, and I live my life to the best of my ability. I ask you to bear with me and accept me as I am. I know you cannot understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding.

Please understand the difference between “happy” and “healthy.” When you have the flu, you probably feel miserable with it, but I have a condition that doesn’t leave. I can’t be miserable all the time. In fact, I work hard at not being miserable. Just because I sound good, doesn’t mean I feel good. I make myself be happy. That’s all. It doesn’t mean that I’m not in pain or extremely tired. It doesn’t mean I am getting better or any of those things. Please don’t say, “Oh, you’re sounding good!” or “Oh, you look good!” I am not sounding good, I am sounding happy. Because I feel bad at times, I am always pushing myself, and sometimes I push myself too hard. When I do this, I normally pay the price. Emotionally and physically I pay a big price for overdoing it, but sometimes I have to. I have no choice. My limitations, like my pain and my other symptoms are invisible, but they are there.

With Multiple Sclerosis, myelin, which is the covering that protects your nerves, deteriorates. Look at it as your nerves being an electrical wire, and wires have protective covering. If the covering is removed, the wire gets a short in it. This is the case with Multiple Sclerosis patients. Your nerves are a wire. The myelin can replace itself, but during the time it has deteriorated and the nerve is exposed, damage is done to the nerves in my body and this damage is not reversible. Thus, causing numbness, pain, tingling and other feelings.

If you want to suggest a cure to me, please don’t. I appreciate the thought. It’s not because I don’t want to get well. If there were a cure, all people with Multiple Sclerosis would know about it. Telling me I need to exercise more or that I just need to lose weight may frustrate me to tears and it is not correct. I work with a doctor and he tells me what to do for my condition.

In so many ways I may depend on you…people who are not sick. I may need you to call and check on me. I might need you to help me do things every now and then. You are my link to “normalcy” of life since I will never be normal again until a cure is found. As much as it’s possible, I need you to understand me.

People with Multiple Sclerosis have different kinds of pains and feelings that are hard to treat. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is jabbing and excruciating. Sometimes it is prickly or numb. At times it feels as though electrical shocks are going through the extremities of my body.

Another symptom I have is problems with memory and concentration. This one is very scary. I may tell you something, and thirty minutes later tell you the same thing. Please don’t say, “You already told me that.” I also might be trying to tell you something and use a wrong word instead of the word I should have used. This is very embarrassing and aggravating, but normal for people with Multiple Sclerosis. It is a very frightening symptom.

All these symptoms and the chemicals in my brain can get me depressed as you would imagine. I get angry, frustrated and I have mood swings. Sometimes it may seem I am being unreasonable, but I can’t admit it. I know this is a very hard thing about being with me. Every time you put up with me when I am in one of my moods, I am secretly grateful. I can’t always admit it at the time, but I am admitting it now.

I know I asked a lot from you, and I do thank you for listening. It really does mean a lot.

There are a lot of new theories abounding at the moment.   Some people are concentrating on the jugular veins blocked theory and others are working with Oligodendrocytes, some cells in the central nervous system.

Hey, says the guy, Ben, who is helping me, did you know that 3G and Vodaphone now have really good coverage where you are?

I was intrigued. When we moved up to the hills some years ago, Telstra was the only possible choice, as they were the only carrier that covered non or outer metropolitan areas. So I work out which carrier is best and decide to get a couple of new phones and new contracts for both me and Brad. All papers were signed, sealed and delivered 28th May.

I bring our new phones home, same numbers, and eagerly await the 24-48hrs for the switch from Telstra to 3G. When it hadn’t happened by Saturday, I called to find out what is the problem. Apparently our account numbers were incorrect. Calling Telstra a second time to get the numbers, I am given two totally different ones from the ones I was given the first time. Great. Just like Telstra.

I give these numbers to our new network and after five or six calls between us straightening things out I wait. Monday rolls around, still waiting. Tuesday arrives and I get a call from the guy who sold me the phones. Oh dear, he says, on finding out I can’t use my new phone except to play backgammon, and goes off to find Stuff out. He calls back and tells me that I need to get the phones put on three separate accounts (the home phone also) as Telstra are not allowing 3G to pick up our numbers. oh…kay.

So I call Telstra and set up the separate accounts. And settle down to … wait. Thursday happens and some poor misguided fool from Telstra calls me to inform me that my contract with them is nearly over and do I want to renew? I said no. She asked why. I told her it was because, among other things, they were incompetent and cited my current circumstances. Strangely, she didn’t say much but ended the call as soon as she politely could.

On Thursday, a week after I bought the new contracts, I am again in contact with the new carrier. They decide this isn’t going to get resolved easily and set up a conference call between me, them and Telstra. This goes well. Not.

The Telstra people make a noise about the carrier involving me. Then they tell me I do have the correct numbers. When pushed they reveal they are not releasing our phone numbers to the new carrier because I am not the account holder. Bollocks, I tell her and cite that my husband gave me complete autonomy on the account and that they can see that both the numbers are to continue being held by the same people. And not only that they allowed me to set up new numbers and phones two years ago – without Brad having to so much as lift a finger even to sign anything. *I* signed the original contracts.

The lady from our new carrier closed the call as the Telstra person was getting defensive and annoyed with me pushing her. She said that the legal implications that the Telstra girl had cited were obviously incorrect but as things stood we obviously weren’t going to get anywhere. So she bumped it upstairs to the managers.

I am getting really good at Backgammon.

I generally lived in men’s worlds – I was in the Air Force, worked on mine sites, worked as a Security Officer – and I held my own in those worlds. I had my place, I knew who I was and I could fend for myself and be helpful to others. Life was good.

Today, I have a dentist appointment. Now I live in a town outside of the main metropolitan area of Perth. It is an hour drive to Perth and then another hour back again. I have owned my own car since I was 22. Driving is something I have always enjoyed – I have driven across Australia several times, up north and down south. Today, I can’t face the drive to the dentist and back again – because I know by the time I am driving those last twenty to thirty kilometers, I am no longer a safe driver. Today, I face the fact that I just can’t do that anymore.

Instead of being capable and competent behind the wheel, I now am subject to extreme fatigue – my awareness of my situation on the road and the cars around me has been eroded. I am fine for short trips, 5km into the village, or even a 20 min drive to the closest town. To go into Perth, go through an appointment with the waiting room and the general sociability to receptionists and doctors, is just too much. Today I am facing the fact that I am no longer capable and competent.

That pisses me off a lot.