It does not matter how slow you go so long as you do not stop. –Confucius
MS is like a thief in the night, stealing the fortitude of its victims. It especially takes advantage of those who have given up or can’t muster the strength to fight anymore.
For me, everyday is a battle with MS. My struggle is not only a movement in opposition to a debilitating disease but also a fight for a fulfilling quality of life. I use every available tool and possible weapon in my personal war against MS. Medicine, food, exercise, and spiritual guidance all play an important role. Most of the time this arsenal is very effective and shields my body from the impinging effects of the disease. But every now and then I am sucker punched with a new symptom that knocks me for a loop. When that happens I try to gather my thoughts and seek counsel from my life advisors, which include family, friends, doctors and my spouse. When my decision-making skills are weakened by sudden medicinal changes these people are able to recognize that I am at my most vulnerable and provide much needed support.
New symptoms steer me towards worse case scenarios and distract me from solutions. I become despondent, believing that my latest flare-up will take over my life. Whenever I am in this situation, MS becomes my personal devil. It spits fire at my soul, burning away pieces of my spirit. First, my confidence and ambitions are damaged. Then my faith and hope are tested until my essence is destroyed to the point that my former self is no longer living. I become a different person who struggles to establish a new purpose. Flashbacks to the individual I used to be haunts my contemporary identity and grow to be the foundation of depression. Malevolent thoughts rage an internal battle that deliberately attempts to control my existence. Suddenly my inward struggles become just as stark as the outward ones.
Every outing is a circus where I am the sideshow freak on display for everyone’s amusement. My life reflects a car wreck that is highlighted by twisted metal and broken parts. As people pass they look and discretely stare, hoping to get a glimpse of my damaged remains. My mind goes a thousand miles an hour, with only the most awful circumstances passing through every few minutes. My entire being is pushed to the edge where I start to conceive alternatives to continuing in my living hell.
At this point I am usually at the end of my rope. Without intervention I am apt to make horrible and regrettable decisions. I have been known to change medicines, begin fad diets and try to isolate myself from the outside world. My support group has been my savior in this situation by not allowing me to become out of touch. I am blessed to have such a compassionate collection of people in my life. They don’t pity me they help me. They stand strong for me when I cannot. They fight for me when my will is weak.
Originally appeared on MultipleSclerosis.net
Hello, my name is Cherese and I must tell you that reading this blog has uplifted me. I have lived in my own personal hell for the past year after being diagnoised with MS. Ive went from being a flight attendant and personal trainer to being a person barely able to get out of bed. My life has changed and Im still in denial. I dont know what to do anymore..I know I will probably never be a flight attendant or a personal trainer again..so now what?? I was going to school to be an RN but now even that seems impossible to accomplish. The question I ask myself is how am I going to live, work, be a mother and a wife. How am I going to function..Everyday I feel depressed, oppressed, and supressed
cherese, My life looks nothing like it used to. I am 38 with no children but have limits I would never imagined before multiple sclerosis. I live a full life with MS. yes it is drastically different. sometimes I resent everyone. even my loving husband. I can’t walk. Drive or work outside the home. Staying positive is a verb for me. it’s hard work. I still do things just differently. my family keeps me going. surround yourself with people that will help you live a good life. this becomes a family affair. please visit the site on Tuesdays when I release new posts! thank you
Amazing…everything I needed to articulate you have hit a he run with this blog post!!
Hi Nicole, I think my MS is secondary progressive because when I had it the first time it was there for a couple of months and went away. Now I have residual symptoms and I feel it is secondary progressive because of that! Anyway, I am eating Xocai Healthy Chocolate and I love the energy I have, plus the regularity my bod needs to function, also the people who know me used to tell me that I looked like I was doing better with my MS, and now people tell me that my MS isn’t MS anymore. I must be healed! However, which ever way I know that I feel better and am working part time again. We have a charity, Actforms.org. The only problem is we are living in Palm Springs, where it’s summer year round. God bless you Nicole, may His peace surround you and give you strength and quicken you out of your chair like Jesus did for me. Christ is not a respecter of persons. You should look for a hands on healing ministry near you! When two or more people agree it shall be done here as it is in Heaven. We have perfect health in Heaven, why not on Earth? Sing praises to His mighty name, He alone is worthy! Lord, I ask you with my heart and soul to go and quicken Nicole. Give her a double portion of what You gave me! Do It Jesus for my Sister Nicole! Amen and amen!
Hi Norma, having residual symptoms does not indicate secondary progressive MS. I have not had sensation my hands for years. I’ve lost control of my bladder 4/7 days a week, can no longer walk more than 1/10 of a mile without falling and not being able to get up (just like the commercials!). I can sleep for 12 hours without stirring except to go to the bathroom, and when I get up, I feel exhausted. When I restrict sleep I feel the same. I’ll get up and fall asleep 2 hours later. All of these are x’s 2 years. I am not secondary progressive. Nicole, the Lord’s arm is not too short to strengthen and heal us. To give us hope and faith. Blessings
Nicole, as the folks above have commented, you have grabbed my feelings and put them in to words. I hope you don’t mind that I stole some to share with my Bible Study group, because when they ask me what I feel like, what is the fatigue like, my own words fail me.
I am a Christian, and the words of “my own personal devil that spits fire at my soul” caught me where I live. I’ve been known to miss Sunday worship, and watch it on the computer instead. That’s not what God has for me, He wants me surrounded by people who have true love and understanding! My Pastor has PPMS.
Nicole – though I’m not in a wheelchair just yet, I can sympathize with you about the ongoing “new” symptoms that seem to pop up in people who have MS, as I experience new symptoms every one-and-a-half to two years; either I will have new places in my body that have “new” neuropathy (such as the latest new symptom of mine, extreme neuropathy on my left abdomen… just started a little over a month ago). I cannot remember the last time I ran – I realize that trying to do so would probably cause me to lose balance, to which I would probably also break my neck; however – this crude material that makes up my body will one day have to give up the fight – I know that; one of the best things that keeps me going is knowing without a doubt that I will get to see my loved ones that have already passed on… there will be no more pain, no more tears, no more suffering – this is the only thing that gets me through the day, often times. Kudos to you on voicing your fight – it is much appreciated… -Drew in Memphis
Nicole, you have a gift for putting into words what I cannot articulate. Thank you and God bless.
Dear Nicole
I think you have something very strong in yourself.
For me the big struggle was/is not to insulate myself from the world, even risking starring. Sometimes its works sometimes not.
Love
Mila
You really write how I can relate. I am still pretty healthy. Some days worse than others but you give me some hope in your writings and are a companion.. though unknowingly … To my trials.. thank you
Great post. I am just emerging from the black, lonely depths of despair, myself. Back to the gym and synagogue this week. Both will provide the social interaction I need to fully come back.
Nicole, once again, our blogging is synchronous. My blog’s poem tomorrow essentially asks, from whence does hope come when lying amid the shards of the broken vessel our life has become. I suppose it comes from different places, depending on the individual, the time, and circumstance. And, yet, hope remains. For what, I cannot say with certainty. Is it hope for a cure? Not predominantly. Perhaps, it is simply hope for forbearance in the midst of hardship. Perhaps, it’s hope for having a good support network which will mitigate depression. Perhaps, in the end, it is spiritual faith. Is that what gets me through? I don’t know. I just know that, though tempted, somehow I don’t descend endlessly into deep despair. Hope, whatever its source, somehow carries me through.
Blessings to you, my friend.
Your prose inspires me and uplifts me and I wonder why I can’t be more motivated. There are so many permutations of this disease I forget them all, until I am whacked by flare. I am stone deaf in my left ear from heaven knows what? MS? A stroke? Many guess, but I am left with the distortion no matter the cause. No music for ten years! Gah! What struck me was with no one to check in with, over the years, I have made terrible decisions and it never occurs to me that my brain is part of this, of course. I am grateful for your ability to put it out there, Nicole. Everything resonates in some way. If I can take away a little of your humanity and strength, then I am good to keep going. Thanks for “Tuesdays with Nicole”.
Nicole, I have never read anything quite so raw from someone else who is describing what I feel like during some of my most vulnerable times. One thing that comes to mind from a blog I read recently written by Pastor Tullian Tchividjian of Coral Ridge Presbyterian is that “God’s office is at the end of our rope”. I agree with that… No one in our life, including friends and family can restore our spirit except for God Himself. He offers peace that surpasses all understanding through His Son Jesus….Although I have a faithful husband, supportive kids and even many friends with MS, when I am in that state of mind, I need help from God. The bible says if you draw near to Him, He will draw near to you. I will be praying for you!
Michele, thanks for the comment and push.
Excellent posting Nicole!
I definitely relate to the range of emotions that you express. How wonderful that you have a great group of people in your life who are ready and willing to step in to support you when the more difficult aspects of this condition kick in. I am often reminded of something my late father used to say “You are never defeated until you accept defeat as a reality and stop trying.” This is one of the things that encourages me when the “thief in the night” shows up in disturbing ways. Wishing you peace and much energy as we move closer towards a cure….
Linda, Yes we need it.