coping with multiple sclerosis

@ALouie (118)
United States
February 13, 2009 1:31pm CST
What helps you deal with MS? Multiple Sclerosis is a bizarre disease. It's sort of the clown of diseases. It is there but no one quite knows what to do with it. When it starts to show up, the medical establishment does everything it possibly can not to say "m...s". Like a clown, m...s...is not credible or worthy of a job or a diagnosis. It is too mysterious to earn a doctor another doctor's respect. How could a doctor be taken seriously when diagnosing a "probable" cause of disease, that you can't really prove. Slight brown spots on the brain are the only picture we have of some real damage happening, but the workings of this damage belong to a circus of an immunity system gone haywire. A clown in the body has lost its objective, and instead of tickling the insides to make someone giggle, the clown gone wrong, barbs at the insides instead to make someone cry. The new victim of m...s...is set off to join an unregistered circus. Without a tent or specific location the victim runs around desperately telling any doctor that will listen that something is very wrong. Every legitimate illness in the world must first be ruled out, and then when you are either unable to walk, write, or see, m...s... will be considered, and even then, as a "probable" cause, because there is still the possibility with m...s... that it could really be all in your head...you silly clown. As the clown in you emerges and you begin to act drunk all the time, you can begin to thank the research teams that have developed some medicine to stop that clown in you from hacking away at your myelin. Slowly you can begin to return to a more stable existence as a part-time real clown. Keeping the m...s... at bay, the victim may now cease to be controlled by the m...s... and rather begin to control it. The FDA approved medicine is the first line of defense, afterwards it is the will to fight by filling up the your bag with nifty tricks. This is what I put in my bag: determination, will, sense of humor, and imagination. Exercise and diet. Keep going forward and try not to look back. If I seem like a bit of a clown sometimes, I try not to blame the m...s.. and just try to smile, or pet a dog. A dog never lets a clown down and even though a dog's affection may not cure m...s... it can surely boost the treatment. What helps you deal with MS?
2 people like this
3 responses
@koalatbs (2230)
• United States
13 Feb 09
Hi ALouie - First off I'd like to say... "EXTREMELY well put"! I assume that you have m...s. As for me, after many many tests I've been told by a neurologist that he believes there is a 50% chance that I have MS. This was about a year and a half ago. I haven't been back to see a doctor for my condition (whatever it may... or may not be) in about 8 months or so. We moved from California to Virginia last summer thus I lost my health insurance. It has been very frustrating, to say the least. When my symptoms began I had only been at a new job for a few months. It didn't really affect my performance because I was a transcriptionist and sat at my desk most of the day typing away. I didn't have any trouble with that. I walked slow, of course, and weaved around a lot. I had several doctors appointment and barely missed any work, never a full day - maybe just left an hour earlier a couple days for an appointment full of tests. My boss knew what was going on and one Monday morning, after returning from the weekend, my symptoms had progressed quite a bit to the point that my husband drove me to work because I was too nervous to try to drive that day. I asked my boss about the possibility of short-term leave if necessary and I told her that I was going to talk to human resources on my lunch break to see what they had to say. Mind you, this was only so I would know what my options were IF and ONLY if the need arose. I was to get off work at 5:00 pm and at quarter til 5 my boss called me into the department manager's office and they fired me on the spot. I was still only probation, since I'd only been there for 5 months at the time, so they refused to tell me WHY they were letting me go... only that they didn't have to based on their probation period terms. I was in tears as they stood and watched me pack up my desk belongings and escort me to the elevator with the box of stuff in my arms. It was humiliating and I knew then & know to this day why they let me go. I'm sure you can guess. Ok, I've rambled on long enough. But, each time I tell someone my story I feel a little more able to deal with it. It still infuriates me at times when I think about it though, as you can well imagine. How long have you had MS & have you been officially diagnosed? I have been out of work since that horrible day a year & a half ago. I actually just began selling Avon last month in hopes that since I'll be able to set my own hours and rest when I feel I need to that it might work out for me. Hopefully be able to bring in a little money by myself here and there. I can't drive much because it really aggrevates my legs. May I ask what your symptoms are? Thanks for your post. It made me feel like I'm not alone.
@ALouie (118)
• United States
13 Feb 09
I am glad that my post was helpful. It sounds like you have a supportive husband and that is very important. It is my wife who always gives me the push I need when I get too wrapped up in thinking about the m...s... I am sorry to hear that you were let go from your previous job, especially since what you described is precisely why m...s... (or m...s... like symptoms) are so bizarre. The person with m...s... tends to be discriminated against from every angle...the employer fires you because you are concerned about taking a break... and the passersby roll their eyes at you if you need to sit down and there are older people in the vicinity (because you "don't look like anything is wrong with you"). Another thing that is so frustrating about m...s.. is that every person's case is so specific so it's hard to figure out what needs to be done. I have had m..s.. for fifteen years and I was officially diagnosed. I have been practically symptom free when the neurologist prescribed treatment (about 13 years ago). It took a couple of years of trial and error until the right medication was found. Initially symptoms of numbing and weakness persisted, until i fought them off with diet and exercise. The worst symptom had been a debilitating fatigue, which i also have gotten under control with proper diet and excessive exercise, as well as frequent naps. Ironically, I stayed home to raise our two lovely children, which is a physically daunting job (especially when the kids are infant - preschool), yet I don't think anyone would have hired me, due to my concern about getting frequent rest breaks. When you freelance or work at home, it is okay to "sit-a-spell", but out in the workforce if you are not savvy enough to hide the fact that you need to "sit" for five minutes every two hours, the other person without the disease will not only get the job, but they may end up sitting down all day ( and probably doing less than the handicapped person would do). I hope that your symptoms don't progress any further and that m...s.. stays away from you. Stay strong. Be well.
1 person likes this
• Philippines
14 Feb 09
Hello! I was about to post a message for you, guys, to call your attention and discuss our condition. I joined mylot a week ago and have just browsed the discussion about ms which was posted i think six month ago? Koolabs, i'm saddened by your plight. I pray it won't happen to me. I was officially diagnosed with ms in february 1993. I was 31 then, single and working as radio announcer/dj. My first symptom was i walked like a drunk and my speech was slurred. One night while i was having one of my request & dedication slots, my head ached. That was one pain that couldn't just ignore. After taking a pill which didn't work, i turned my program over to the technician who played on auto and i went home. The pain was gone in the morning but numbness began on my right cheek. When my speech got worse my boss told me to see a doc. (Just imagine an announcer who babbles while on air!). In the hospital my mother overheard an intern say it was just "psychological". I wanted to scream at that lady intern that i am a radio announcer and i usually talk fast and clear! But my ever calm mother pacified me. The numbness spread down and half of me, the right side of my body was paralyzed. Can't walk without holding on to somebody or something. It was my mother who bathed me and had to feed me because i dropped the spoon when i tried to eat by myself. (Thanks for mothers!) It was hard brushing my teeth, etc, etc! My first neurologist said it's ms and a second confirmed it through a lumbar tap. I was told that i won't recover a 100%. After a month of hearing the neighbors talking about me saying i'm dying, i slowly got better and back to work. Mother even commented that I sounded better on the radio because i talked slower and delivered my news better! I thought i have fully recovered but in April 2002 another doc said the tingling sensation on my belly is just another one of the symptoms of ms. I met my husband when i was 36 and before we married i told her what i'm going through and that my case may worsen and i may be paralyzed again, or worse become a vegetable. He married me anyway in October 2002. I am barren, another case of policystic ovaries. I'm employed in the postal service for 16 years now, doing the stressful duties as a postmaster. Still performing normally without aids, enjoying the company of my God-given adorable, loving, caring, supportive husband who massages my limbs when the attacks come until i fall asleep (till his own hands aches). God has a purpose for everything, even this...mylotting, sharing each other's pain so we can lift up each other, and give comfort to those who needs someone who understand what he/she is going through. People who emphatize, not just symphatize...
1 person likes this
@ALouie (118)
• United States
16 Feb 09
Your response shows lots of strength. It is very encouraging. Thank you.
1 person likes this
@mrsctb7 (120)
• United States
16 Jul 09
Hello! It is good to meet you! I have had Multiple Sclerosis for over 22 years. Your positive attitude will serve you well! All "MS'ers" that I have known are determined, mostly positive, and "never-say-die" attitude people! For me, hear turns me into a rag doll ...... almost no muscle strength. So, I drink lots of water, make sure I have a way to keep cool, and think before making plans. Make sure you contact Multiple Sclerosis Assoc. of America. They are such a helpful organization, and they gave me a Cool Vest for as long as I need it! You can call them at 1-800-learn-ms ...... Yes, there is the MS Society, but they have never really helped me. Also, joining a MS Support Group should help. I exercise without heating up my body too much. You'll learn what is "too much" for you. I also have been on Avonex for about 9 years, and I have not had a single attack while I have taken the Avonex. Another very important things is to have a way to blow off your frustrations. Everyone needs to have some way to do that. I hope this helps!
@isawu2 (97)
• Canada
12 Mar 09
I have had MS for 15 years now and your right you never know from one day to the next whats going to happen my symptoms change constantly. One day I'll be raring to go the next I sleep all day because I'm so tired.