The Journey

I don’t know about some of you, but I suffer from bad nights. I sometimes get severe muscle cramps that keep my up all night until 4 or 5 in the morning and leave me so exhausted I cannot function very well the next day. Last night was like that. I was so tired today I slept till about 2 pm today. I got up and took a shower and felt more like myself. I hate days like this. I know it was because I did not eat any bananas all week – it has to be because when the body does not have enough potassium it causes muscle cramps. I am kicking myself in the butt because I was not watching out for myself this week. I have to constantly remind myself “I come first” – I have to take care of myself before I can take care of anything else. I did not tell my sister, she did not look like she wanted to talk today when she got home from work. I guess I will just talk to my blog and get it off my chest.

I am going to school full time and I have to stay healthy and well. If I don’t take care of myself, I cannot do school and school is very important to me. It pays to listen to your body. My body punished me last night and I paid for it dearly.

The weather is changing too. I can feel it in my body. My skin on the left side of my body hurts sometimes. I feel like I have ice water running in my veins 24 hours a day. Not a great feeling, but I am going to remain positive about this — I will not be so negative about the fall and winter seasons here.

I got the strangest comment today from someone wanting to know if my MS was under control? I did not get upset, which is very surprising because I normally get uptight when I have to explain my situation for the 1000th time. I just realized that not very many people understand what MS is. It is such a baffling disease to many and widely misunderstood.

I simply just said MS is an unpredictable disease. No one knows when the next MS attack can happen. Someone can be fine for 10 years before another attack occurs which is what happens to me. Some people can have one attack and can never have another symptom ever again. Some have attacks every hour, some have them once a year. Everyone is different and it depends on how the person copes with the illness. Do they let the MS defeat them? Do they will their minds to get better? How does someone cope with MS? I know with me, I think it is power of the mind. I know that I go through the different emotional stages, why now, why me, I’ve been fine all this time I hate being on a steroid type medicine, I hate this disease. I feel sorry for myself for about a few days and then I am anxious to get my life on track and to get better. I will myself to get better. It may take 3 weeks, but I know my body is healing slowly. I have to believe that – it is important.

I learned a new word today when I was reading my book “Women Living With Multiple Sclerosis” – by Judith Lynn Nichols — Lhermitte’s Sign – another word for electric shocks or tingling up and down the spine to the legs, arms neck area. WOW! Finally there is a word for this.  I looked it up on the internet — yep! these are some of the things I suffer from – check it out – the website is http://www.neurologychannel.com/multiplesclerosis/symptoms.shtml – interesting stuff.

Wouldn’t it be great if the tingling stopped? Maybe I could get a decent nights sleep for a change. I know that when I lay in bed the legs and butt tingle for hours – I have to lay there and will myself to sleep. My feet tingle – worse than my legs. It is very hard to concentrate so that I can try to go to sleep right away. Usually takes about 1 to 2 hours to finally ignore the tingling and go to sleep. This started about 2 years ago with my last attack and it hasn’t really gone away.

Myra called me today from our MS group, she was having a bad day. She suffers from tingling all over her body and has to rest. She was not feeling all that great so we talked for a while. I shared the new word I found – she said she would ask her doctor and see if that is what it is. Sometimes the tingling leaves you feeling zapped – no energy at all. Have to sit down and rest. I’m wondering if she and I have the same thing. I wonder when walking if that makes this Lhermitte’s sign worse – the tingling does not stop. Something to think about.

I think I’ve always had MS. I can remember certain times in my early childhood suffering from different symptoms that I suffer from now. I can’t help but wonder if you are born with MS and it is not something that develops later in life. I have asked my doctor’s that, but they tell me it is not possible.

I remember when I was really young around 8 or 9 years old, my family lived on a farm and there were bunk beds. I remember the hall light being left on because either my sister or my cousin was afraid of the dark or something like that. I was on the top bunk and I would turn over because the light would keep me up. Iwould get dizzy, the room started to spin. The feeling is almost like you are drunk and trying to sleep and the room starts to spin. Same idea. It would last for a little while, couple of days and then it went away. I remember this happening a lot when I had to sleep on the top bunk.

Other times I remember when I was 14 years old, I  belonged to the girl scout group and one year we all planned to ride our bikes to Mackinaw Island and back with the boy scouts group. The whole trip was going to take about 2 weeks and it was going to be in the beginning of July. I can remember doing the long bike rides and feeling so tired and not being able to continue. I could never keep up with anyone, always last and often felt like I was going to pass out. The girl scout leader had to pack my bike up on the truck and let me ride in the front seat with the air conditioning on I slept long periods of time. This happened several times through out the trip. I remember feeling hostility from some of my girl scout group comrades.  I couldn’t explain why I felt the way I was feeling.

Another time I remember very well, I was 22 years old I had joined an exercise group that had dancing and aerobics at the same time and it was upstairs in a hot room in Florida. The instructor made us run around the room about 50 times while having done aerobics for about 45 minutes straight. When we were done, a friend and I had to go downstairs to get out of the building and the hallway got really dark and big huge spots appeared around my eyes and I had to grab the railing to prevent myself from falling down the stairs. I was so dizzy I could not make the hallway stop spinning.  I was exhausted for days after that. My friend was so upset with me because I did not want to do this type of exercise anymore.

These are times in my life that I just did not feel good and people got mad at me because I felt those things. To this day I wonder if this was the beginning symptoms but because the disease was not talked about back then in the 70’s not very many people knew about it as much as today.

Today is not a good day. My body feels so tired and groggy. Fatigue is a part of MS. It can mean many things. I know I am tired because I did a lot yesterday and over the weekend. I did not rest like I should have and now I am paying for it. I know I ate foods over the weekend that were not healthy foods. Why do I do that? I know I cannot eat certain foods. It affects me in many ways.

I feel so groggy. My definition of groggy means my body feels like it is being weighed down with a bunch of weights and I have to push myself to get going. It will be interesting to try and motivate myself – that today is going to be a good day without feeling sarcastic about it. I just want to lay in bed for a few more hours and sleep, but I cannot, I have an appointment at 10:30 today. I already re-scheduled this appointment twice.

Ok – enough of the whining and get motivated – to get through the day. The best thing I can look foward to is when I am done with my appointment I can come home and take a  nap.

This is something that I just recently discovered – Gluten – What is Gluten? I really never understood the word  until I started doing research on it.

Gluten is a mixture of proteins that are found in wheat, rye, oats, triticale (a combination of wheat and rye together), and barley. Interesting since most foods on the market are made with wheat flour. Many foods I love have these grains in them. I love oatmeal and oatmeal raisin cookies. Guess I have to make another diet change. CRAP!

The therory is that MS attacks are caused by food allergies. Most people usually find a pattern after keeping a food and symptom journal for about six months. Some have said that eliminating milk fat, gluten, animal fats and sugar from the diet, they have noticed a slow but steady improvement in their health. This actually makes sense to me — diet and diseases are often related somehow.

We all know that sugar is bad – it is poison – it feeds the bad cells in the body and causes major medical problems for many.  Milk fats, animal fats cause the cholesterol to be high and gluten – well I am still researching and learning. I hope that I will have a better understanding as to why Gluten affects the body so strongly.  I do know this – when I eat a lot of breads and eat cereal or oatmeal everday, I do not feel right. Just as when I eat fatty meats such as beef. I become extremely tired. When I watch what I eat, eat a lot of vegetables, fish, organic meats like chicken, blueberries, cherries, drink green tea, eliminate crackers, breads, cheese, milk and sugar I feel soooo much better. Hello! I think this is a clue. I have more energy and my mind does not feel like it is in a fog.

I hope to learn more about this Gluten free diets – I am reading an article by Roger MacDougall – My Fight Against Multiple Sclerosis – he claims that he eliminated gluten, dairy and sugar from his diet and has been in remission for long time.

Interesting reading – check it out – www.direct-ms.org/rogermcdougall.html

As I sat down to write another post in my blog I realized after writing an essay paper for almost 6 hours for school, I was tired. I need to go to bed soon, I am exhausted. I know that we as people often tend to push ourselves to the limit. There are too many times I ignore what my body is trying to tell me – when I am tired I need to rest. My body does not function to it’s fullest capacity when I am exhausted. I have to remember that I have MS. There are certain things that I need to do to take care of myself. I must eat right, get a lot of rest and put me first before anything and anyone else. It’s all about me. If I don’t start taking care of myself, I will have a bad attack. My attacks get worse each time. I have different symptoms, they are never the same. Are these people going to take care of me, when I have an attack. I bet they don’t. There is only so much a person can do for someone.

I cannot worry about what others think of me. It doesn’t matter what they think. If they get mad, upset or cop an attitude – TOO BAD!!!!  This is about me. This is about what my body can handle. If I am tired, they need to understand that, I must rest. It is important to be healthy at all times. It takes a person with MS twice as long to recuperate from exhaustion that it would be for a person that does not have MS. I have to remember – it will be there tomorrow, whatever it needs, it will be there tomorrow. I must listen to my body. It is all about me!

My 4th attack happened two years ago, Thanksgiving time. Thanksgiving is a very big holiday for me. I normally have about 10 to 14 people at my house for dinner. I really go all out with the food and everyone always manages to enjoy themselves. When my attack happened, I totally freaked out because my hearing was affected. I am deaf in my left ear, no one is exactly sure why. I had to go to Puerto Rico for business trip to train people to use a specific accounting program, and when the plane landed, my left ear started buzzing really bad. Everyone sounded like an echo. It was awful, I could not adjust to using the phone there because I was so uncomfortable. When I returned home, my ear nose and throat specialist would not pinpoint as to why I lost my hearing. He said it was either from my MS, having deaf parents or the pressure in the airplane. So when my right ear started buzzing really bad when I woke up one week before Thanksgiving, I totally freaked out. I made an appointment to see my neurologist – Dr. Idiot that morning.

My sister came with me because I was so tired and my whole body was in pain. It was difficult to move normally without feeling like I had been attacked with pins and needles everywhere. When I got to the doctor’s he made me do the nose and finger touching, walking in a straight line, flexing my feet and legs etc. I never get that but he seems to scribble some notes into his chart every time we do these tests. He says to me “yep, you are having an attack”. I am like really? wow! that’s news to me! NOT! Of course I am having a bad attack. I said, ok what do we do now. He said well we don’t prescribe predisone anymore, you will have to go on inravenous steriods called medi-soluable. It is 1000 mg of steriods pumped into your body once a day. A nurse will come out to the house and set up the line for you. Oh great! I think to myself, how will I explain this to people at work, because they do not know I have MS.

I call in sick for 2 days, my work does not have a controller, I have been running the accounting department for 1 year. The nurse comes out and puts the IV line in and shows me how to use the steriods. The first treatment makes my blood sugars shoot up to 290 to almost not normal 300. I had to call the doctor to find out what to do. He told me to go to the ER.

The ER takes me right away because my sugars are high, and starts an saline IV and brings the sugars back down to almost 165 which is much better. What a stressful time. I decide to tell my bosses at work, and they seemed to be understanding about my situation. I told them that I was having an MS attack and I am in a lot of pain and can hardly move. Also, I would work at home so that things would not get behind. I manage to keep things under control.

I cancelled Thanksgiving dinner because I really could not do anything, bend over let alone try to cook. I was so disapointed. I felt like I let everyone down. My attack lasted aboout 2 weeks, after the IV steriods was done, I slowly began to feel normal again. The treatments really left me agitated and in a bad mood all the time. I felt like I wanted to crawl out of my skin. It was the worst feeling I have ever gone through.

Today, I thought about some of the obstacles I had to overcome with having MS. One of my biggest pet peeves is that people often tell me “you are using your MS as an excuse for everything”.

Sometimes I find these things out from other people because some are afraid to say it to my face. I think that those kinds of people that do these things are people that have no empathy for others, it is all about them. These types of people are not in my life anymore because they are negative forces of energy that drain all the positive energy out of me. I figured this out the hard way, after reading the book “Lean on Me” by Nancy Davis – she had to leave her husband because he just did not understand what MS is and his attitude was draining her to the point it was unhealthy. I realized that I had some people in my life that have upset me so much that have caused me to have bouts of depression, being so unhappy about the friendship and always having to constantly be on guard so that I wouldn’t offend someone about something I had done. It became to the point I almost was going crazy and I was so unhappy. My doctor told me I had to make some heavy decisions about what to do with my health, if I was going to continue on this path I would definitely become bed-ridden with MS flare-ups every day.

I chose positive energy and took control of my life and forced the negativity out of my life. These people are no longer a part of my life, I have blocked all their negativity and no longer allow them to control my feelings or me. How dare they make me explain and defend myself for something I have absolutely no control over. I cannot control the MS flareups. I should not have to explain anything to anyone. They should accept and understand how I am feeling and not throw that back in my face ever!

Now I surround myself with people that respect my MS and me. That is the most important thing you could ever to do yourself. I should never ever have to explain to anyone why I feel the way we do, this is something we have to life with everyday and our family and friends need to accept that. If my friends cared they would pick up a book about MS and read on it. Do some research on it. Be a friend. We have bad days, we have good days, we have poor-me days and we have I’m-on-top-of-the-world days. To demean or put down someone because of MS, this person needs to be flushed out of your life forever! I come first in my life, then everything else falls into place.