Part 1: Shaking the Devil
“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” ~ Khalil Gibran
It can be hard to stay positive when so many negative things are happening around you. My cursed search for a meaning to the madness that is multiple sclerosis (MS) consumes my life.
Living with MS is a rollercoaster. Some days are up and some days are down. Happiness is here and then it’s gone, leaving a cloud of smoke behind. And just when I think I’m getting some relief and can finally breathe clearly, it strikes again.
It’s like the devil has found a home inside my body. Nipping at my faith. Growling. Constantly showing his teeth. Scarring my spirit. Marking my soul.
The power MS has over me is so strong, I start to believe I’m chained to it and there’s no escape. It feels so bad; I would trade anything for a cure. That’s when I can’t see beyond the fog of the disease and I wonder if the pain will ever let me go. Like nothing good will ever come again.
I hate how it affects me. It is mind-numbing the paranormal way it constantly tingles in my fingers, manipulates my thoughts, and destroys my confidence. I’ve cried so much, I feel like I’m drowning.
I just don’t comprehend what’s happening. If I keep getting weaker, what am I going to do? My mind says, “You can handle it,” but my body refuses to follow its lead. The worst part is, I’m beginning to sense there is nothing I can do about the progression. I listen to my doctors, but sometimes I feel stupid for taking all these different types of medicine. The side effects are draining. It’s like I’m killing myself as I try to kill MS.
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Part 2: An Isolated Nightmare
It’s the stuff of nightmares.
But thanks to time and loved ones, I’ve been able to craft a new normal. Be it with a limp, cane, wheelchair, or scooter, I’ve managed to face and live through it all.
Still, I never imagined it would get this bad.
In the midst of losing my physical abilities, I’m also afraid of losing myself. I’m scared MS will take away me. But my competitive nature refuses to let that happen. It’s become my goal to continue being me, in spite of MS.
One of the most aggravating things about MS is the social isolation it begets. As if society has forgotten about me.
It’s just so hard to fit in when I can’t drive. I have major fatigue issues, and sometimes I get confused during basic conversations. My limitations cause me to feel cut off, especially when I’m surrounded by a group of able-bodied people.
It’s particularly hard at parties and gatherings. Normal interactions turn awkward or involve just a smile or a wave, but fail to develop into standard encounters. I’ll sit in the middle of a room and people will walk by me like I’m not even there. Since I just can’t do “normal” things, it’s as if I’ve just disappeared, gone missing without a trace.
I think the problem is related to a lack of understanding. When I tell people I have MS, they look at me like I’m a unicorn. It’s so misunderstood, most people shy away from spending time with me. They’re not sure how to treat me or what questions to ask.
To counteract the loneliness, I continually reach out to people who are on a similar path as me. When I do, I always seem to have a great time. I find myself talking for hours and usually making some new friends.
My family, friends, and other people with MS provide that much-needed support and companionship. I even use them when they are not present. When my feet go numb, I think of them. When my fingers don’t work, I think of them. When I try to walk and fall face first to the floor, I think of them.
Nothing else compares to the love of my family and friends. That love allows me to freely accept help and accommodations, ultimately giving me a better life.
Scared initially, I’ve now accepted my diagnosis and discovered how to incorporate MS into my life. I’ve learned to soldier ahead. Well, at least I try to. And as I look towards my future, I know there will be dark days, but I also can see the sunrise.
Despite the trials and tribulations, I choose to focus on the positives and leave the rest to faith. I can continue to harp on all the negatives or I can choose to be happy. I’d rather live my life no matter what obstacles come my way, have fun, and hope the universe hears my prayers while I try to stay positive about my life with MS.
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Original article appeared on Healthline.
As always, Nicole, I enjoyed reading your post. Your honesty touches my heart. You often find a way to put into words what I feel but can’t talk about. When I was first diagnosed, I went to a neuro who put me on a whole slew of meds. Daily Copaxone injections, steroid pills, anti-depressants, anti-seizure (I’d never had a seizure), Baclofen for spasms, the list goes on and on. I dutifully filled all the prescriptions an popped all the pills. Brain fog set in. Terrifying confusion. I slurred my words. Friends avoided me because I couldn’t hold a normal conversation. I had horrible insomnia, went for days on end without sleep. This is when depression set in, too. I talked to my neuro about all my symptoms – all new since I’d been under his care. He assured me over and over these were not side effects of all the drugs, but symptoms of MS. Every time I reported a new symptom, he added a new prescription to counter it. I had to stop working because I just couldn’t think, couldn’t follow simple instructions, couldn’t make decisions. My kids were very young (2 and 7) and I couldn’t care for them. After a few years I couldn’t take it any more. I got off ALL the drugs and put myself under the care of a naturopath who is also an MD. I can’t believe how my head cleared. I could think again! I started sleeping, I stopped getting lost, my speech no longer slurred. My depression left. It was like coming out of a waking coma. It’s been about 4 years that I’ve been drug free. I still can’t walk, but I feel like I’m alive and living on my own terms. I would not tell anyone they should flee their neuro and drop all the meds, but for me it was the best thing I ever did for my MS.
Nicole I know how you feel. Sometimes it feels like I live with a dragon who demands a pound of flesh every so often. DO NOT GIVE UP ON YOURSELF or give up on a Higher Power. Like another reader I gave up on the idea of meds because I had seen a lot of folks with MS develop serious brain infections and more. No one seemed to be doing better than me while they were on meds – often a slew of them. I am not saying don’t do what your doctor says, but do remember that you are in charge of your own healthcare.
And if you need any proof that you are still here and important, read the comments to your blog! So many people find inspiration and information here — all from you, lady!
Your honesty Nicole is what sets you apart from many, we believe and share in your triumphs because you have shared your greatest lows, this gives all of us the courage to hope. You have touched my life in a a very positive way and I feel a great deal of love & compassion for you, which in tern, helps me in feeling love & compassion for myself, because I see myself in you, and who wouldn’t admire you.
You give so many hope Nocole just for being who you are. Thank you.
Nicole,
Powerful words, thank you. Honest, too. When people affected by MS share their thoughts, I value honesty above all else. When the hardships are not denied but there is still an active search for meaning, hope remains as a motivating force. I believe you embody this.
My own therapist recently suggested I read some of Dr. Bruno Bettleheim’s books because he felt that this Nazi concentration camp survivor and famous psychologist had something to teach me about survival under extreme conditions, a definition he felt applied to living with MS. I have benefitted greatly from two of Bettleheim’s books, The Informed Heart and Surviving and Other Essays.
I appreciated about Dr. Bettleheim that, while he sought to examine what made one a survivor, he did not try to paint an artificially happy face. Indeed, while focusing more on how to survive, he also acknowledges that circumstances may make it hard and sometimes impossible. When he says “Great as one’s pain may be, it becomes more tolerable when one is certain one will survive the sickness that caused it and eventually be cured,” he indirectly addresses the special challenge we face as MSers, the for now unremitting descent into further paralysis.
Yet, in Dr. Bettleheim’s words, we still have the capacity to ” discover a life of harmony which permits one to make do, to get along with others, and to live in harmony also with oneself.” In finding meaning, regardless of circumstances now matter how sordid, we also find a reason to continue living.
That is precisely what you have done, Nicole, and because you choose to share your journey with others, you also serve as a torchlight to guide others on the path. I am grateful for your courage to face honestly your challenges. I am particularly grateful for your willingness to share your experiences while facing those challenges. It is a great contribution you make. Thank you.
Judy
I’ve shared all of your emotions at one time or another, and it can become frustrating. I try to get my mind into other things so I’m not constantly dwelling on the disease. Even though I’ve been robbed of so many abilities, I find that by trying to find adaptations, my mind isn’t as bogged down as it could be. As you mentioned, faith is sometimes the only resource, and I cling to it.
NICOLE, I’M GLAD TO HEAR YOU ARE FEELING BETTER & THAT IT SEEMS YOU’VE COME TO TERMS WITH YOUR ILLNESS. I FELT THE SAME WAY YOU DID ONCE, A LONG TIME AGO. I NO LONGER FOCUS ON THE NEGATIVES OF MS BUT ON THE THINGS I HAVE TO LIVE FOR: MY FAMILY. I HAVE 2 GRANDBABIES NOW & THEY ARE EVERYTHING TO ME. MS IS JUST AN INCONVENIENCE, THAT’S ALL. I AM ALSO ISOLATED, OUT IN THE BOONIES; SOMETIMES IT IS WEEKS SINCE I’VE BEEN OUT. AS LONG AS I HAVE MY COMPUTER & MY DOGS, I’M FINE, MS DOESN’T REALLY PHASE ME NOW. KEEP UP THE POSITIVE ENERGY!
Kim, I’ve been at this for a long time, too. 43 years. No ms meds. Still walking. I go through phases that include depression but I do my best to focus on the positive. The adaptive capacity of humans is miraculous. Faith is key in my world. I am never alone. I wish us all the best.
I wish I could be as optimistic as you. I just want to quit, more and more every day.
I wrote a book about my travels with MS. Ebook. Muddling Through MS – 40 years doing it my way. We each live it our own way and need to get the info out there.
as always, Nicole, thank you for sharing your most intimate thoughts with us and the world. I am really moved by your writing in this piece.
Nicole
You are amazing! I am RRMS since 1995. I am controlled by medication (neuro and psychiatric) my father says I am just lazy, my neuro says i am fine – just need to loose some weight, my Psychiatrist says I have no discipline. I am a chameleon – change shape acording to the season – in winter I slim down in summer I try not to eat incorrectly but my meds make me hungry. In summer the fatigue is so bad that I often don’t look after myself which is why i have 2 wordrobes – my fat clothes and my thin clothes. I am fortunate i can still work as a librarian (I now have an assistant) and have worked in the same company for 22 years. I love what I do but fear I will not be able to manage work for the next 10 years until i retire on full pay. Inside me and in the dark of the night i fear that I will want to committ suicide again – I failed at that once and am greatful my Mom found me in time and got me the correct medication. Mom died 4 years ago and now Dad does my meds weekly and when he dies my sister will take over. Dad has his own health issues – brain cancer so it is overwhelming at times but life goes on. Your husband must be an amazing man and i take my hat off to you both for not giving up on you! I include you in my prayers and often wonder what it would be like to meet you both in the flesh? Soldier on Nicole. Your written word gives me so much hope………thanks