Slow Burn: One Smoker’s Battle with MS and Addiction
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I have MS and I am a smoker. There, I said it.

But this simple admission does not absolve me. For my doctors, militant non-smokers, sin tax perps, and clinical researchers who insist that smoking is a factor in developing MS and in hastening its progression, fessing up is just not enough. I must quit the devil leaf or else face a hellish demise.

Last week, my seventh attempt to quit smoking since 2010 resulted thusly: It failed. Thanks for playing, we’re sending you home with a nice parting gift–your sanity.

Now, I’m stronger than this. I am! But it is beastly hard to quit and then to stay quit, even though I know that I risk COPD, lung cancer, esophageal and mouth cancers, stroke and heart disease. What’s more, my cholesterol is dramatically affected by smoking. After an eight-month interval of quitting smoking in 2011, my LDL plunged from 130 to 99 and my HDL rose by an impressive 19 points from 40 to 59. After I resumed smoking, those numbers quickly changed back again. And to make matters worse, I have a history of developing oral leukoplakia (white mouth lesions), none of which have been cancerous or pre-cancerous, thank goodness, and which decrease whenever I have quit smoking, then increase after I start up again.

I deeply wish I were the kind of timid soul that could easily feel terrorized by these facts and quit cold turkey, but I’m not. I’m fearless, and though this is a sterling quality when it comes to coping with a chronic disease such as Multiple Sclerosis, it also fuels denial and feeds my compulsion to chain smoke.

Across and within various studies conducted by questionnaire all the way back to the 1980s, researchers have documented an unmistakable–albeit tenuous–connection between having a history of smoking and the likelihood of developing active MS. Back in 2010, when I’d first caught wind of such a study, I dismissed it as poppycock and didn’t even bother to read it. After all, I thought, there are 47 million smokers in this country and only 400,000 MSers, a significant number of whom have never let a cigarette touch their lips. Here we go again, I grumbled, lighting up my fourteenth cigarette of the day, let’s blame smoking for every twinge, every ethnic cleansing, every death that isn’t from natural causes, inflation, unemployment, heck, let’s blame smoking for two world wars and the latest Wall Street abuses while we’re at it. Smokers are the catch-all scapegoats for everything that is wrong with the world. Why, I’ve gone so far as to feel solely accountable for the spiritual starvation of my neighbors when I realized that sightings of the images of Jesus and Mary burned onto a grill cheese sandwich or silhouetted on the side of a water tower have only occurred out west. I have read of no such sightings here in Tecumseh, Michigan, and I’m beginning to feel personally responsible for this embarrassing absence. Oh, it’s a heavy load I carry.

Clearly I cannot be objective. I’m a two-pack-a-day smoker and I love it, it’s my major coping tool. It’s the one thing I can do when I’m too weak to walk around, do the dishes, exercise, water the plants, or when my fingers are too numb and weak to do much typing. Smoking is easy, I don’t need fine motor skills to do it. It allays boredom and helps me to concentrate. It is a tactile, oral, chemical-laden orgy that is so richly satisfying on so many levels—and, you don’t need a buddy to do it. It’s my hobby, my lover, my most intimate friend.

It is also a toxic and life-threatening relationship.  I should pack my bags and leave forthwith. I’ve tried it so many times and then gone crawling back. If you were living with a loved one for decades, someone you loved more than your own life, and you were told that if you don’t end it, you’ll die—could you walk away? Stay away? I know, it sounds pretty twisted. It’s way up there on the list of dysfunctional, lethal relationships, coming in a close second to Hitler and Eva Braun. Or Bonnie and Clyde. Or, Cheech and Chong, they’ve been on-again-off-again for years now, we’ll have to see.

Believe it or not, though, I did holster my guns long enough to take a look at the data with a more objective eye.

In a 2010 study that explored smoking as a risk factor in developing MS, it was discovered that those patients who ever smoked and also had antibodies for the Epstein-Barr virus were significantly more at risk for developing MS. Actually, it is a little more specific than that: Only the presence of a high viral load of EB made those smoking histories a relevant risk factor.1

I can see why a researcher might regard this mysterious connection between EBV and smoking as a carrot worth chasing down the clinical study rabbit hole. I can even imagine how this pursuit might help identify the perfect storm necessary to trigger that first myelin-killing spree committed by our newly psychotic T-cells. But as a smoker already diagnosed with MS, I hardly found this to be personally useful. I wanted to see a study that offered some kind of hope for a smoker with MS who quits long after her diagnosis. And then I read this:

A study published in the July 11, 2013 issue of “Brain” concluded that smokers with MS had a significantly higher risk of reaching the Expanded Disability Status Scale Scores (EDSS) of 4 and 6 than did non-smokers. Note the distinction here: Non-smokers rather than never smokers. In this case, non-smokers included former smokers. It’s that one item in the study that jumped out at me, that there was no statistical difference in the risk of reaching those EDSS milestones between never smokers and smokers who quit either before or after the onset of their MS.2

I’ve chosen to interpret that last line thusly: Quitting smoking could slow the rate of disability progression no matter when a smoker quits.

So this sinner now harbors new hope for redemption. It won’t make quitting smoking any easier, but it does give a boost to my nicotine-addled spirit. I’ll never give up trying to quit. Even if it takes twenty more tries and a straitjacket in a padded cell, I’m going to leave that abusive lover behind once and for all, some day, somehow. Wish me luck. I’ll need it.

view references
1. Combined effects of smoking, anti-EBNA antibodies, and HLA-DRB1*1501 on multiple sclerosis risk.. Available at: http://www.ncbi.nlm.nih.gov/pubmed/20375311 2. Tobacco smoking and disability progression in multiple sclerosis: United Kingdom cohort study. Available at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3692034/
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30 comments on “Slow Burn: One Smoker’s Battle with MS and Addiction

  1. PJCherapan says:

    Kim
    I enjoyed reading your blog!
    I, too am a smoker who enjoys smoking. I smoke a pack a day.
    One day I will quit! But today isn’t that day 🙂
    Thanks

  2. Kim – first, I have to say smoking tobacco in any form is unhealthy. HOWEVER, it is true that studies that try to link tobacco use to any malady known to mankind get funded. Studies that find any potential benefit of nicotine use, such as Alzheimer’s memory improvement, rarely if ever do. Therefore, there are studies implying correlations, however weak, between tobacco and most diseases. I’m not a cigarette smoker, but I think that, though quitting smoking would yield health benefits, if it gives you pleasure as you cope with the nasty symptoms of MS, don’t beat yourself up. I occasionally smoke cigars and tobacco pipes. And it helps me cope. I can go months without a smoke, but if I want to, I’ll indulge. Good luck!

  3. kathym says:

    I was wondering if you have read anything on Chantix “quit Smoking” and MS. I read an article that stated that since Chantix messes with your brain, (which we have trouble with anyway)if you don’t already have diagnosis of MS, Chantix can further advance the MS. I truly feel that is what happened with me. Regardless I am a smoker to this day. Chantix didn’t make me a very nice person!!! I think back to when I was taking Chantix and my diagnosis six months later, and my only thought was…..MS is not going to take away my one bad vice….smoking. Went back to smoking and enjoy it haha. crazy huh???

  4. Sooz says:

    Kim,I sure can identify with you. I smoked my first cigarette in 1963. My first attempt at quitting was sometime in the mid-80’s. I’ve tried hypnosis, Nicotine Anonymous,nicotine gum,the patch,Chantix-four times (so far).The Chantix works. Trouble is, no one can provide anything to prevent relapsing. I do okay until I see an ad for a quit smoking product or someone in the car next to me at a stop light smoking. You know what I mean.I can no longer count how many times I’ve quit. I can say that I’ve found a cigarette that does not contain all that extra crap that most do. The’re American Spirit.100% additive-free premium natural tobacco-made in Santa Fe, Arizona. I seem to be able to go longer without “needing” one. Perhaps all that extra stuff has stronger addicting powers? It would be just like big tobacco to do something like that. I have filled another prescription for Chantix and it’s sitting in my closet.Like you I’ve been computer dating. No real luck so far. I feel that if I were to meet a non-smoker that wold give me a little more incentive to quit. It sure would get my mind off it. I have, over the last week, been emailing a new man that has possibilities-and he’s a non-smoker,so maybe? Like you, cigarettes have been my best friend, my lover and my junk food!

  5. Kim Dolce moderator author says:

    Sooz, Thanks for writing, I see we have some things in common. I have smoked American Spirit in the past and liked it–but I roll my own now so I can afford to keep smoking, and I have no idea what’s in the bagged stuff, it’s mostly pipe tobacco or “dual-purpose” tobacco. My dating life has produced no real prospects, mostly a few people who seem right and interested, but then drop the ball pretty quickly. Oh well. And most men I meet are non-smokers, I’m with you on hoping one of them will motivate me to quit. Best of luck with your new prospect–and the Chantix. I’m considering trying it a fourth time myself 🙂

  6. Mspbfh2 says:

    Oh Kim, I feel your pain!! I have tried everything to quit, and have always gone back. This time I’m up to 5 months without cigs, although not nicotine free, I vape. I have gotten to the low nicotine vapors…

  7. jencandler says:

    Hi Kim, I was diagnosed with ms this year April 26. I had been quit before finding out I had ms for six months.then I find out I have ms and picked upa.cigarette…it is hard no lie..but I quit again because im tired of smelling like an ashtray…my son has asthma…dont wanna pass second hand smoke.having that mentality made me want to have a better life. Gonna fight this disease and not add lung cancer to it.you got this…rooting for you in California!

  8. Mojosmom says:

    SO glad to know I’m not the only one who has MS and still smokes!! i’ve tried to quit many times, too, but not in a few years. the way i justify it is, MS has taken so much from me, i’ll be damned if i give up this one, last thing i still enjoy. i’ve had to stop smoking, out socially and when driving (can’t do both, any more) so leave me and mt 6-8 cigs a day alone! i have an e-cig right here. i puff it in the house, occasionally, then go outside (down stairs and back up, when i’m done) for a real cig, every 3 hours or so….

  9. Dalene says:

    As a “reformed” smoker I can tell you it takes will power!
    My husband and I quit together, because he was getting sick from the smoking. I had been diagnosed a year prior with my MS, at that time I was in the Optic Neuritis Treatment Trial. Interestingly, my study Dr. told me it was not the best time for me to quit! I explained the health situation of my husband and he agreed I should quit.Anyhow, my husband and I went “cold turkey” it wasn’t as much of a struggle as I thought it would be. The third day without a cigarette was the hardest, after that it got better day by day. It has been nearly years now, there are days when I think I really could use a smoke, but then I remember all the money we have saved (and spent on other stuff) and remember how awful my sister smells, the urge passes quickly! Good luck if you decide to quit, have faith in yourself that you can do it!! We live with MS, we can do it!!!

  10. purplecello says:

    OK so I smoke. I know it bad for me, for lots of reasons. But do they REALLY know that it makes MS worse? Researchers can make numbers do very convenient things. For a while they said mercury in dental filings caused MS. Then is was artificial sweeteners that was the villain. I think gluten is on the hit list currently, as well as food preservatives. Where is the balance?
    We need to live as healthy as possible but I believe moderation in all things is wise. Too much of anything is not a good thing. I have cut back significantly. I smoke 3-5 cigarettes on any given day and I smoke the “72” or shorter cigarettes. I enjoy a cigarette with my coffee in the morning or with a glass of wine on the porch in the evening with my cats. MS has taken a lot from my life and at this point there are some things that are just not negotiable.

  11. betennant says:

    Kim, I feel for you. I will tell you what I told myself. It sounds harsh but this is how I finally gave up smoking. I smoked hard during my 30’s. You could smoke at work then, I thought I was so addicted, that I would never be able to quit. Each time I tried, my chest ached with need. I kept breaking over and just having one Finally when my chest was hurting either I didn’t have any, or I just got mad at myself. I also have migraines which are never fun and some feel like you’re brain will blow up. I told myself, “when you have a migraine, you don’t die”. and if you don’t have smokes because you are sneaking around then you won’t die from some chest pain either. So I took two aspirins or Tylenol and I went on. I did reward myself. Let me tell you right now, that was a mistake. But the pain of not raising my hand to light a cigarette means you can quit. I also took up crocheting. I crocheted until my hand would go numb. I also had Mono which I caught from my school age son, and I had it so bad it took weeks to get over it. You don’t have to buy that pack of cigarettes, and you don’t have to get someone else to provide them and you can quit. Yep, you will suffer but the suffering you do later will not be what it will if you don’t quit. I watched my dad get throat cancer, treatment that made his throat damaged, and still he suffocated to death for weeks, grabbing our hands and begging us to pray for him. Please realize it won’t kill you to suffer a bit now to have a better outcome later. I was told I had COPD but I have helped myself with Chi Gong. They are breathing exercises. I was always active, but I was not longer a slave to carrying around that darn red cigarette pack holder with matches. So, buck up, face the truth and just don’t light up. If necessary, ask your doctor about electronic cigarettes, but I think that is just contributing to a habit and pushing back the pain of giving up nicotine. Really, nobody has a gun to your head but your lungs, and they are screaming don’t do it. You will be astonished at the places where you smoked and how bad they smell afterward and be sorry you put your non-smoking freinds through that. I found that mints as strong as I could find them helped and chocolate made the cravings worse, because there was nothing like that cigarette after a nice piece of chocolate cake. As for the other thing that makes you crave, have a mint so you can kiss them goodnight.

  12. purplecello says:

    I’ve been given the same lecture. Smoking makes MS worse. I’m sorry for sounding jaded but do they really know? They thought mercury in dental filings caused MS. I know smoking is not good for me and I have cut back significantly. I smoke 3-5 cigart

  13. Judy says:

    Kim,
    The problem here is you are reading the wrong studies! There are other studies that say smoking helps MS. All I can say is I have MS (16 years) and I continue to smoke and I have maintained much of my mobility. I am like you… I really, really like smoking. My theory is that I do not want to be old with MS, so I’m puffin’ away! haha

    Good luck with quitting. You can be a roll model for all us hard core smokers. We are a dying breed you know. 😛

  14. Kim Dolce moderator author says:

    Judy, LOL!

    We are indeed a dying breed. Literally. 😉

    Kim

  15. DawnH says:

    Thanks for the smiles and laughs. I too am a smoker and I am still waiting for my official DX. I have a LP on 10/24 and an Doctors appt on 11/11 and there is no way I am quitting before then. I have my ecigs in my purse but they just don’t do it for me right now. I have been off work since 10/01 due to arm weakness, buzzing in my feet and extreme fatigue . I am a Pediatric Intensive care RN who works 12 hr shifts and it is more than I can do right now.

  16. Kim Dolce moderator author says:

    DawnH,

    I hope you won’t be joining the ranks of MSers, but if you do, know that you’ll find plenty of support here and elsewhere. And I agree with you that this is not the time to quit smoking, lol. You’ll need that coping tool right now. One thing at a time, my friend 🙂 Do let us know the results of your testing.

    Kim

  17. Deb says:

    I have had the symptoms over 30 years and diagnosed 20 yrs ago and I smoke, still do and have no desire to quit! Everything under the sun causes MS don’t you know? I do not intend to give up one of the things in life I do enjoy. We are all going to die someday..fact of life so why not enjoy the life you have to the fullest doing what ever you want?

  18. Kim Dolce moderator author says:

    Deb,

    I need to quit smoking because I’ve developed chronic sinus infections this year and hack my lungs out every morning after rising. I’ve started using a bronchodilator recently because of shortness of breath caused by that stubborn sinus infection. I think quitting would make me feel more comfortable than I do, quite honestly. As much as I love it, it’s been causing some extra problems.

    Yeah, none of us gets out of this alive. But I’d like to croak doing something pleasant like having sex 🙂

    Kim

  19. JustsayN says:

    I liked smoking. It soothed my nerves. I smoked for approx. 35 years. During that time I had no intention of quitting, my MS dx only made it worse. Then came the increased and more intensified flares. I rose from my bed only to fall limply to the floor. After four days of steroids, I was able to use a walker to move limited distances. The fatigue was tremendous. Balance was impaired. I KNEW it was time to stop smoking although I really didn’t want to. I also KNEW I didn’t want to spend the rest of my life confined to a wheelchair. So I quietly decided to stop smoking. It was Lots wife parable from the Bible that helped me. God told Lots wife to leave and “not look back”. She did and turned to a pillar of salt. Somehow this parable touched me. I set a date certain.

    The day came and I was down to my last cigarette. I told everyone to get out so they would not interrupt. I still think of it. When the smoke cleared I went to church. I have not looked back and don’t have the urge. I AM so grateful.

    I think it happens to us in unique ways. The first step you have taken..the decision. It helps to when you are determined. Stay with it. Good Luck!

  20. Kim Dolce moderator author says:

    Thanks for the encouragement. You are so right, that personal epiphany is unique to each of us. I’m glad you had yours.

    Kim

  21. ScarlettOH says:

    Kim, you describe very eloquently your love affair with cigarettes, but you don’t tell us what you have done to try to quit.

    I know it’s really, really hard. Been there, done that, but many, many years ago, 35 to be exact. There were no quit-smoking aids then. I did it with 2 similarly motivated friends at work. We allowed ourselves a couple of months to work up to it, then the day came and we did it. We succeeded! The first couple of weeks we were unbearable to be around but at least we had each other to kvetch to.

    After that came (for me) 18 months of chewing the tops of plastic pens, yuck, so great was my oral fixation. But whatever works, right?

    Nowadays people can try Chantix, which has really helped several smokers I know to quit. I’d have used that had it been available, certainly.

    MS wasn’t even faintly on my radar screen in those days–I just got tired of the cost (next to nothing by today’s standards), the smell in my clothes, the awful gunk on my TV screen and furniture, which I knew was also in my lungs, all the fun aspects of smoking.

    Yes, I gained weight over the next 6 or 8 months, 10 lbs. But I figured that if I could quit smoking, the hardest thing I’d ever managed, that I could lose the weight, and I did. And if I could do those things, I could start exercising, and I did, and I went back to school at night to pursue another degree, etc., etc. So I credit my quitting smoking for much more than just that, and it’s one more source of guilt I don’t have to deal with.

    It’s so worth it!

  22. ScarlettOH says:

    I was typing while you were replying.

    Keep at it. You will succeed.

  23. Marie says:

    You really need to quit smoking ASAP. My brother died from lung cancer caused by smoking and he didn’t even have MS.Good luck, did you try the Patch or other methods?

  24. Kim Dolce moderator author says:

    Hi Marie,

    I’m so sorry for your loss. Yes, I’ve tried Chantix (three times), Zyban, patch, gum, lozenges, e-cigarette, chewing regular gum,gradually reducing the number cigs each day.

    The only thing I haven’t tried is hypnosis. That might be next.

    Kim

  25. caseyrd says:

    Kim, I was also a pack a day smoker for years, I have switched to the electronic cigarette, still get nicotine, but over 2000 less chemicals than regular cigarettes, I haven’t smoked a regular cigarette in over 2 months, plus I save so much money switching. Anybody that needs to quit I would definitely recommend this.

  26. Kim Dolce moderator author says:

    Hi Casey,

    I did try e-cigs and they weren’t effective for me. You can’t draw on it the same way you can with a tobacco cig. I got so frustrated whenever the battery would shut down from over-drawing on the stupid thing, lol.

    Kim

  27. Tim says:

    Kim,

    Loved your article. I’ve smoked for 30 years. For 22 of those 30, I’ve had MS. But, aside from my time running restaurants or the occasional all-nighter, I’ve never been a pack or 2-pack a day smoker. On the other hand, I’ve made only a handful of attempts to quit. Those were largely half-hearted since I thought, “Hey, I don’t smoke that much…” You know, justifying my inability to stop with the moronic rationalization that I don’t smoke that much!

    I attended a presentation recently with a neurologist who said that the single best thing you can do to manage MS is to stop smoking. Not diet. Not exercise. Just stop smoking. And since I pay little attention to my diet and don’t really exercise, why not just do the one best thing and stop my 4-or-5-cigarette-at-the-end-of-the-day-on-the-deck-with-some-wine-after-the-kids-go-to-bed habit?

    Talk about abusive (and intrusive) lovers. I’ve thrown her out (or she’s been thrown out) of nearly every facet of my life: in the car, indoors, at bars, at restaurants, on a plane, in a hotel room. Yet, there she is, waiting for me right after the kids go to bed. I stopped loving her a long, long time ago, but am still searching for a way to get her out for good.

  28. Kim Dolce moderator author says:

    Thanks Tim,

    I wish you well with your quitting–and I envy you for only smoking four or five cigarettes a day!

    Kim

  29. Kim, It’s good to finally know who to blame for global warming – all that heat you produce with each flick of your Bic can’t be good. DJ, my very dear friend who has MS and also a 20+ year old tracheotomy from an MS episode, still smokes. It’s her one vice and she stopped trying to quit years ago. I know you won’t join her in that category and you will succeed one of these tries. But honestly, you make me want to reach for one and light up with you, as I laugh my way through your trial by fire with smoking.

  30. Kim Dolce moderator author says:

    LOL on the global warming–I’m thinking I should ask Al Gore to revise his thesis on what causes it. He could call it “The Kim Effect” 🙂

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