This morning I had a dentist appointment. I go once a year, have the usual, a clean, descale, tartar removed. Off I trotted afterwards feeling great, sunny day, dentist said I had great teeth that she could see that I took care of. Yah!
I drove back to Puke and decided that I would nip into town and get a haircut. Important to look neat and tidy to return to work next week. After my haircut, I stopped into Subway and got a sandwich of the day to take home. Then I wandered back along the street with sandwich in hand, window shopping, very calm and enjoying the sunshine.
Then it happened! "Excuse me mam." Who am I? The Queen? Young guy in his 20's is waving a book in my face. Oh geez, a bible basher! I ducked around him, sometimes its better to say nothing and keep walking. This guy wasn't going to be ignored. So he tried again. "Are you working or shopping?" Grrr, what business is it of yours buddy? I must be turning very intolerant in my old age (nearly 39), because I turned on him. "I'm not interested!" Probably an over-reaction, but he pissed me off.
The accosting doesn't end. There were two of them. It happened again as I was standing at a crossing waiting to cross the road. Another guy, waving a piece of paper. "Excuse me Miss". This guy didn't stand a chance. "Look! I'm not interested!"
I marched, not walked, marched back to my car, my sunny, calm mood shattered. I know people have to sell things, but stop accosting people in the damn street! Can't they open a shop or set up a table with things to sell? If it interests me, I'll stop and look. Pushy people immediately put me off, they could be selling something really good, but get in my face and try to push something, I switch off.
A lousy ending to a pleasant morning on a sunny day, I thundered back to my car with a storm cloud over my head.
Our Wedding Day
Thursday, July 15, 2010
Wednesday, July 14, 2010
MS and Me
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 ...
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.
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've had children and I appear to have lost my brain in the process!
I am always astounded at the lack of duty of care that some parents have when it comes to the safety of their children. The other day I was putting my groceries in the boot of the car at Pak n Save. As I was coming out of the supermarket I observed a women and her three children standing talking to some old duck. All good, maybe she's catching up with a family friend.
What shocked me was that while mum is chatting to the old girl, her children are milling around the shopping trolley. The shocker is that they aren't standing on the footpath, they are standing right in the middle of the carpark! Cars drive through a carpark and this silly woman is standing yapping to someone with no concern for the safety or welfare of her kids!
I continued to load my groceries into the car, thinking "she isn't that stupid, she will move" Er, no. I reversed out of the my parking space and stopped. I thought that woman is going to see me and move her family. Wrong! She continues talking and I tooted as I wouldn't be able to proceed until she moved herself and her children out of the way. The glare I received in return as she hastily moved herself, I could not believe. Excuse me for driving my car in a supermarket carpark! Beyond belief!
What shocked me was that while mum is chatting to the old girl, her children are milling around the shopping trolley. The shocker is that they aren't standing on the footpath, they are standing right in the middle of the carpark! Cars drive through a carpark and this silly woman is standing yapping to someone with no concern for the safety or welfare of her kids!
I continued to load my groceries into the car, thinking "she isn't that stupid, she will move" Er, no. I reversed out of the my parking space and stopped. I thought that woman is going to see me and move her family. Wrong! She continues talking and I tooted as I wouldn't be able to proceed until she moved herself and her children out of the way. The glare I received in return as she hastily moved herself, I could not believe. Excuse me for driving my car in a supermarket carpark! Beyond belief!
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