This Is MS Multiple Sclerosis Community: Knowledge & Support

I am not quite sure how I feel about this title but after reading this story I did sit back and think about what I have gained by having this disease. I would be interested to hear what everyone else thinks about this including spouses.



Why I'm thankful for multiple sclerosis

I gave up smoking and drinking and lost 50 pounds. It's hard to imagine where I'd be without my disease


Lorrie Jorgensen

From Monday's Globe and Mail Monday, Sep. 28, 2009 12:00AM EDT

I wish someone would hurt me. Not kill-me kind of hurt, but enough to damage me visibly. They could run me down with their car or batter my legs with a baseball bat. That would work.

I don't normally think this way but on my tired days when I'm really wiped I tend to get dramatic and over the top with self-pity. I have multiple sclerosis and one of my biggest challenges is battling continuously to overcome the debilitating fatigue that accompanies the disease. Like a junkie, I have worked my way through the available medications, but nothing has worked for long.

The medical community does not know what causes MS but there are theories. There is an increased prevalence of the disease in northern European countries, leading to discussions about environment, lack of sunshine and vitamin D. There is also talk about predispositions, viruses and genetics. Being female almost tripled my odds of getting the disease. There is no cure.

The tiredness is hard to describe. It's not like the fatigue you feel when you have completed your first 10-kilometre race or triathlon. I wouldn't know what that feels like, but I've seen the joy and elation that accompanies the exhaustion runners bring to the finish line and this isn't the same kind of tired. Runners are rewarded with endorphin buzzes and recovery time. In the grip of MS fatigue I am not.



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It's also not the kind of tired you get when you've stayed up all night to study for an exam and then aced it. You are still grinning with the accomplishment on the way to giving yourself permission to sleep all day – a worn-out, blissful utopia. I know what that feels like and it's not the same kind of exhaustion. There is no joy or elation, no rewards or accomplishments.

MS fatigue is lonely, depressing and full of guilt. It is being exhausted just thinking about doing dishes, vacuuming or knowing there is another day of work ahead. I have become proficient in the art of negotiating with myself.

When I miss work or a social activity, I obsess over the need to explain myself to people. Other times I play the silent martyr, hoping for compassion and understanding that I am unable to ask for because outwardly I look normal and I'm afraid people will think there's nothing wrong.

Multiple sclerosis is an autoimmune disease in which the body's immune system attacks the myelin coating that protects the central nervous system and the brain. I have lesions on the white matter in my brain and on the days I stumble over my words, saying door when I mean window or open instead of close, I fear I'm losing my mind and imagine a giant Pacman munching away my sanity, my health.

The inflammation and scarring of the myelin interrupts the usual communication between nerve cells and can result in a wide variety of symptoms depending upon the affected areas. These may include blurred or double vision, loss of balance, trouble with co-ordination, muscle stiffness, bladder problems and memory loss or other cognitive concerns. Not all people will experience the same symptoms as the disease's progression is unpredictable and personal.

At the height of my first major episode six years ago I went numb from the hips down. It started as a tingling sensation on the bottoms of my feet and within five days it had progressed to my pelvic area. When I closed my eyes, falling over was a concern because I couldn't sense where my lower body was. I learned to shower with one eye open. Driving was out of the question and walking was limited to an uneasy shuffle with my hand on the nearest wall, railing or companion. The grocery cart became my walker.


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I am in the initial stage of MS – relapsing-remitting. It's likely that I will some day move on to the more progressive stages of the disease. I live every day as it comes, and every second day I self-inject a disease-modifying drug. Its side effects are flu-like symptoms – aches, pain and fatigue.

Most days, when I am only ordinarily tired, I cannot complain about having MS. The possibilities when I was diagnosed in 2003 were either a virus, multiple sclerosis or Lou Gehrig's disease. I wished for an easy-to-cure virus, but considering I could have had ALS, with a life expectancy of two to five years, I feel fortunate my outcome was MS.

My life is full and, odd as it may seem, I am grateful for all the disease has brought me. Since my first acute episode I have managed to quit smoking and drinking, two activities I was really good at. I started eating right and hired a personal trainer, lost 50 pounds and am now healthier and fitter at 49 than I have ever been in the past 25 years.

Sometimes I wonder if I had not been diagnosed with an incurable chronic disease would I have made this kind of commitment to myself and to my health. In a way having MS saved my life because I've chosen to live and fight every day. I'm glad I will never know what not having the disease would have been like.

Good for her! Very positive outlook.
Jeff, not so much. His line is "I've got the gift of MS! Can I give it back?" He was already a fit, active, non-smoker, non-drinker. And he already appreciated his life. He really didn't need MS to wake him up. Me neither. But, that's life.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Yeah, I am gutted I got MS because I have always taken care of myself and been a bit of a health freak, no drugs drinking etc....what a waste of my time that was!!!


Edited after reading Robbie's post: I wish it would go away too...I know if I could get rid of it I would enjoy life to the max!

I think kowing that ms could change everythig in the future for my wife and i made me focus on work and getting the things that we have now.i was always a fly by the seat of my pants kind of guy and ms really helped me grow up even though i was 28 when i got it. Now that i have everything i want i wish it would go away.

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Had ms for over 19 years now.

I ditto Rob to a degree. I was also a very fit, healthy person, but I didn't know how to live day to day that's for sure; in the now if you will. The reason why I'll never buy into "I'm fortunate for this" is because the negatives to MS FAR, FAR, FAR, outweigh the good lessons it has taught me. Not that they are insignificant, but there's a chance I'd have learned them anyway, and I liked myself very much so before all of this shit.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Some days I try really hard to come up with a single reason that I am fortunate to have gotten a chronic, worsening disease that has attacked my one and only life in its prime. And then I think, "What the hell are you doing? There is nothing fortunate about this crap. What a waste of time."

Hmmm. Perhaps I have trouble seeing the bright side?

Lew I'm 100% with you on this.

I'm sorry if I offend but TIMS is a place where we can speak openly and for me, MS is a pile of shite, not to put too fine a point on it. It has robbed me of my youth, energy, changed the amount of children I could have or cope with, changed friendships for the worse and has decimated our finances, not to say anything of a career that's had to come to a fullstop. My husband has a wife who is often ratty, exhausted and has less than half the energy of his mother in her 70's.

Paradoxically, I am actually very happy in my life, and content with what I have I kid you not! I know it doesn't sound like this but I am. Just MS is the pits. It's just that I'd much preferred to have been this happy WITHOUT MS, not with it. I can see absolutely no positives to MS in any form.

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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.

Agreed. I had the positive outlook thing going for the first five year. Then MS showed up for real. I'm still a positive person who has absolutely not a single constructive use for MS. It can piss up a rope.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Lew
You're so right.
I wish there was a big hand-clap emoticon because I'd post it here

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~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.

Yes, I know what you mean. I HATE MS and what it has done to my life. I have talked to our Pastor about why me, though I am a believer I still don't understand. My wife and others don't understand when I talk about bone marrow xplants, chemo and now hopefully CCSVI - they talk about how dangerous everything is. My answer is that truthfully I don't care, the upside is I could feel good, the bad side is I won't have to put up with this any longer if something major does goes wrong.
I really don't consider myself depressed or suicidal, I consider myself a realist. You are talking to somebody who played a ton of basketball, racquetball and golf, who coached all his kids baseball, basketball and lacrosse teams and who know can't even walk far enough to go watch a game - I really just don't like living how I have to now.
I am sorry and I don't mean to flame anyone, but as opposed to me needing help due to my negativity I think anybody that is thankful for having MS is the one that really needs help, or never had a life beforehand! I only read this thread because I thought it would be a sarcastic thread with that title!
Please accept my apologies if I offended anyone, but this was my time to rant - now please pass me those magic mushrooms that would make me thankful for this miserable disease!

What's your address, I'll get some in the mail . Jay, I was actually playing in the midwest regional racquetball tournament in Chicago when my optic neuritis decided to show itself. Took a time out, it went away rather quickly, went back in and it flared back up within ten seconds. I know what you mean.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Well said Jay123, a realist is what you and I are, Loobie too.
I too do not want to offend but really, we can be glad for things in our lives despite MS, but certainly not glad for the MS or anything to do with it.

I was thinking about this earlier. Pollyanna I am not. http://en.wikipedia.org/wiki/Pollyanna

_________________
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.

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Loobie,
My first sign was playing basketball - I would randomly just fall over! Finally started skipping the bb and just doing the post game fluid replenishment.
I went to an orthopedic guy for like 3 appts until he started accusing me of my problem being in my head! Finally my chiropractor (who I went to often to straighten my back from the racquetball and golf) suggested I might want to get to a neuro.
yea, I am just so thankful for this!!!

My dad sent me a DVD of some movies he'd taken the few years preceding my MS diagnosis. I had to keep looking away. It took a while to figure it out but looking back MS was the equivalent of stomach stapling. So, while I look the best I have in 15 years having lost 45 pounds, I am only able to pick and nibble. I look at overweight women, like I was, and sometimes I am jealous. I guess there was some lemonade made from being dealt lemons but it is still sour.