Since My MS Diagnosis, I’ve Realized It’s OK to Be Different
Confusing people is my special skill. I’ll open my mouth, and no one will have a clue what I’m on about.
It all started with a diagnosis of multiple sclerosis eight years ago. Since then, I’ll often get, “MS? Oh my sister’s friend’s aunt’s nephew’s dog has that!” (Just kidding.) Yet so few actually understand what it’s like to live with an illness like MS.
Living with MS entails the unpredictability of my body doing strange things for no apparent reason, the uncertainty of disease progression, and the constant wonder about relapses and what they mean, why they happen, and whether meds are even working.
I love it when people ask me, “How are you doing?” I chuckle for a moment as I think of all the ways I could respond.
My favorite imaginary response would be to tell the truth: “Yeah, I’m not too bad today. I feel like water’s running down my back, ants are crawling over my skin, I’m tingling like crazy, my leg doesn’t seem to be working right now, and I can stroke my dog but weirdly can’t feel her fur. Other than that, I feel great, thanks!” I imagine their face would be worthy of a picture.
In reality, just to keep it easy, I respond with the classic, “I’m fine, thanks. How are you?” This means, “Let’s change the subject to something more understandable.”
Another thing that strangely seems to confuse people is my entrepreneurial household, which strongly believes in personal development, goal setting, and finding ways to help others. Many don’t understand that our goals and our need to help others in our business are so important they often come first over friends or family. We don’t have a TV in our house either even though TV is the “thing to do” around where I live. Deep meaningful conversation is often scarce. TV is the main focal point of conversations so if you’re not up to date, you get left behind. It’s another source of further confusion. Others may disagree with our way of living, but I’m OK with that.
A final point of confusion is a recent change I made to my diet. I’m following the OMS diet which is a plant-based diet encompassing whole grains, vegetables, fruit, and seafood. (However, I don’t like seafood!) For now, I’m using this diet rather than taking certain medications, particularly disease-modifying therapies, or DMTs. Therefore, eating out is difficult with anyone other than my husband due to the strict nature of the diet.
Yet recently, I was with family, and within 10 minutes I was offered a can of cola, a trip to a takeout restaurant, and a visit to an all-you-can-eat buffet. These suggestions were offered right after I had explained the healthy new diet I’m on!
Remember, I’m not saying that everyone should make diet a replacement for medication — that’s a personal choice. Taking DMTs alongside a healthy diet and listening to your doctor are positive things.
But where I’m at right now is that my neurologist recently told me that the medication I’d been taking for the last seven years wasn’t working. That means I suffered through seven years of horrible side effects that changed my life for no apparent reason. I feel like I’ve temporarily lost trust in medicine because of this, and I want to try more natural methods for a while.
Yes, my life is confusing for many others — I get it. However, I accept that I’m different and I take it in stride.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Carole Marsh
Hi. I was diagnosed with MS back in 1976 just 3 months after my wedding after which I lost control, co-ordination and sensation on my left side. I couldn't walk, use a fork and loads of other stuff...you know how it can be!
After 6 months on steroids, physio, et al, the ship steadied and my mobility returned (mostly). I was left with some sensory impairment but hey ho!
It helps to be crazy if you have MS, and the older I get, the more off-piste I tend to become. MS can be a wonderful reason for doing something differently, not an excuse for not doing something.
45 years on, I've had quite a crazy life, I had 2 kids, 2 hip replacements, I worked until redundancy in 2009, then did a BA Joint Hons in Media Writing and Media Production and several more academic achievements. I'm 67 and still working as a researcher.
Whatever your current challenges, keep ploughing on. Don't give in or give up. Do everything you can to raise the spirits of those around you, don't let them write you off!
I'm currently enjoying this blog, it's uplifting so thank you. Lets stay upbeat.
Debbie
I think this has to be one of the best articles I have ever read explaining MS! Thank you so much. You have told my story exactly ! Amazing!
Steve Bunting
Loved you piece today, so many points I can relate to and are just like my own. I have then just read about you the author. Again I was diagnosed at 23 back in 1983 and when I was told I had heard of MS but knew nothing and from memory I was not given any information either. Now I am 59 and getting on with life although the mobility is getting worse. Its always good to read posts and I must seek out your podcast.
Azmeh Dawood
The seafood is just required for the omega oils. These can be obtained from algae directly - which is where the fish get them from. And hemp has the perfect omega 3-6-9 balance for Homo sapiens. You are making the right choice re: pharmaceutical meds - health, strength and healing to you.
I have PPMS, am 10 years in, no pharma, vegan, fungitarian, intermittent faster and am loving it!
celine dunne
I’m an old timer with ms and found this article very funny
Especially water running tingling ants & strange leg so well put even the dog got a look in
Keep up the good work ??
Helen Bartman
Has anyone else had adverse effects from the covoid vaccine?After the second shot of the Phizer vaccine my walking has deteriorated..I use to be able to walk around one block but can't now.
Jessica Grant
Thanks Jesse
You have a way of putting into words exactly what I’m feeling
I love your truth
Marie Wilkinson
Hi Helen, I had the first Astro Zeneca shot and it left me paralyzed for three days. I couldn't even stand up or roll over in bed. My doctor is adamant that it had nothing to do with the jab, but was all to do with the MS. Even today, my balance and walking has deteriorated. I am due to have the second jab beginning August and I am hesitant. I hope you do improve with time.
Anita
I had the opposite effect. After my second Moderna vaccine, I seemed to get a burst of energy for 3 or so days. I actually felt great. Hope you feel better soon.
Jeff
Most people mean well, but don’t really have a interest in truly knowing how you are doing. It’s just a greeting with a question. My responses, don’t seem to matter, so your response, follows exactly how I handle it. Being outside with friends, for 4th of July, and trying to avoid the bug tingling sensation. Then I look down, and see 2 ticks crawling on my thigh, while seated under tree for shade. Then a person asks if that MS thing cleared up yet? I say, yes that restrictive diet thing, doesn’t mix with a plate of hot dogs, chips, or sodas does it? Frequently, somebody will chime in, that they know someone that has had MS for 30 years, and you would not even know it. You ask what type of MS? The guy replied, not sure, what one did you say (I hadn’t said)? I answer, and he says, yeah that sounds right! You’ll be fine, like them, 30 plus years ya know, any more hot dogs? Used to get frustrated, but have gotten thicker skin, and I make it clear, that that subject is finished, unless they are serious, and really want answers. I’m taking Ocrevus, and have no idea if it is helping or not. The every 6 month infusion, is always a good reality check for me. In the infusion center, I see cancer patients getting their chemo infusion, and some seriously ill ones too. Spoke with a old, frail, smiling gentleman. I said, it’s a beautiful day outside here isn’t it? He really looked worn, but that smile got bigger, and he said, yeah, and after my chemo, I’ll try to get my ice cream cone in, before it hits me. I shook his hand, with tears in my eyes, and said thank you sir, your a inspiration!. Yeah I’ll get through this!
celine dunne
I received the astra zen the first injection floored
Me for a few days no trouble with the second
Maybe u should get it checked out good luck
Emer
Your articles so up lifting .
My son just diagnosed and need to be positive for him and his young wife