Finding Your New Normal

It's 9 am on a Friday morning as I sit patiently awaiting an IV so I can begin my infusion. I make small talk with the nurses after taking my routine pregnancy test to ensure my heavy-duty medicine doesn't harm my apparent unborn child. Unfazed, I ask Jenny how her daughter is and then look around the room to see if any of the other usual suspects are here. Within a few minutes, I have 115 mL of Tysabri being pumped into my veins that will slow down my overactive immune system for next 30 days. As I sit back to begin two hours of frivolous busy work to pass the time, I can't help but think to myself: This is my new normal
 
When I learned that I had multiple sclerosis, it felt as if my whole world came crashing down. I was full of emotions – terrified for what this could mean for my future and angry that I couldn't do anything about it. It took me a good year to shake out all of the ramifications of learning of my incurable illness, but eventually I came to terms with it. This is my new normal.
 
Through that process, I learned firsthand the true meaning of the statement "time heals all wounds." After the initial shock wore off, I had months to research what having MS entails and I empowered myself with the knowledge and tools I needed to tackle it. Time allowed me to talk to others with the disease and to consult with specialists that, too, gave me confidence I could be okay. Time gave me the ability to accept my illness and what it may mean for my life moving forward. This is my new normal. 
 
One of the scariest aspects of my first MRI was learning the truth behind my symptoms. But the actual process of getting the scan can be equally as terrifying to someone who's never experienced one before. You're placed in a large contained machine for hours at a time without the ability to move. You sit there with your own thoughts while it makes the loudest screeching sounds for minutes on end. That first MRI was so daunting to me but now, I know what to expect. Time and experience gave me that gift. I now ask each MRI attendant for a few things to make the process easier: headphones so I can play music, a towel to cover my eyes from the bright lights and insight into how long each scan will be. This is my new normal. 
 
While no two days are the same with MS, I have generally come to expect symptoms based on the location of my lesions. My vision will never be the same because of the one on my optic nerve. And other symptoms just seem to come with the diagnosis, like bouts of fatigue, numbness and tingles that shoot from my head to my toes. While I’m always susceptible to new symptoms, new lesions and relapses, I’m getting to know my body, my limits and my triggers. This is my new normal. 
 
So whatever you're going through – no matter how big or small – rest assured, the shock will wear off, you will adjust and time will be there to help you recover. Whether it's days, weeks, months or years, you too, will find your new normal. 
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Angie

Angie Randall

Angie is a new mom to Chloé Renee and Oscar the Shih Tzu, and wife to Bill, her husband of two years. She’s a health and wellness enthusiast, who loves cooking, home decorating, and traveling the world. She was diagnosed with relapsing-remitting MS in January of 2015. You can also follow her journey at WellandStrongwithMS.com and on FacebookTwitter and Instagram.

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    23 Comments

  • David Maskalick   Nov 23, 2016 7:19 PM
    Angie,
    You've got a great attitude that will continue to help you deal with the challenges you may face with MS.
    Best wishes,
    Dave
  • Spencer   Nov 23, 2016 7:27 PM
    It's interesting to read about your choice to pursue this kind of treatment -- it's nice to read such an open, candid report!
  • Angela   Nov 23, 2016 11:51 PM
    Thanks for such a great read and congratulations on your bundle of joy. So glad the meds didn't interfere with that part of your life. I agree about the MRI and find this really is scarier than the unknown diagnosis for so many people waiting to know what is actually wrong with them. Keep on writing, you are a great help.
  • Rene   Nov 25, 2016 11:19 AM
    I guess I'm blessed because I'm relatively symton free after being diagnosed in August. No vision problems. Little sensory nerve involvement. Steriods calmed the lesion was down on my cervical spinal cord. Am now on Copaxone.
  • peg kocevar   Nov 25, 2016 11:49 AM
    Don't let MS limit your life but do learn your limits and learn to pace yourself. be kind to yourself and learn to say no when you need to save that energy. Remember that asking for help is giving someone else a chance to be a hero and go out there creating heroes.
  • Rita Mandado   Nov 25, 2016 2:24 PM
    Stay strong. It's a difficult road but with positive thiughts, behavior, people you will do great. I've has MS for 31 years and every day us different . Just focus on knowing when enough is enough.
  • Jeanetta   Nov 25, 2016 3:52 PM
    The one thing that is consistent with MS is it's unpredictable course. I have had MS 40 years. The body is amazing and it's ability to heal itself wonderful. Tysabri gives your body a chance to heal itself so don't count out your sight getting better.
  • Louise   Nov 25, 2016 5:39 PM
    This short article is exactly what I needed. Thanks Angie, also struggling with after effects of optic neuritis diagnosis in July ( also the start of my diagnosis). I'm two MRI's in and awaiting lumbar puncture, should have an official diagnosis at appointment with my neurologist in a couple of weeks. He has also suggested Tysabri which I've heard is or of the newer meds currently available.

    I think I'm still in shock stage even though it's going on 6 months since the neuropathic pain and other symptoms initially began, perhaps this 'official' diagnosis coupled with my appt in Jan with an MS nurse may bring me more closure.

    I do, however, cherish the new zest for life this has brought me, even if I don't ever feel 100% again.

    All the best. 😊
  • Mike   Nov 26, 2016 12:17 AM
    My introduction to MS arrived in the mail, in the form of a radiology report several weeks after my first MRI. "You have indications consistent with a demyelating disease." A bit of research without a doctor or spouse to soften the blow. My world came crashing down, at the time. That was my normal 14 years ago. But normal is dynamic and changes. The importance of learning to live with the new normal, and enjoy what you have, cannot be overstated. In my case MS was a wake up call, a reason to adopt a healthy lifestyle and ride my bike to stay healthy. Fast forward. Tens of thousands of miles later, and weighting over a hundred pounds less, I continue riding hundreds of miles a month and can easily say that I am much healthier today, by regaining control over my health and well-being, than when first diagnosed with MS. My new normal.
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    MzKey  Dec 1, 2016 11:00 AM
    Hello Angie,

    I am newly diagnosed (NOV 16) PPMS. I am getting ready to start my first round of Tysabri on 12/02/16 and my question to you is, have you ever suffered any side effects of the drug? and also can you tell the difference once you had the fusion versus before?
  • Tracey   Dec 2, 2016 8:06 PM
    Are the infusions you do to help with the progression?? I take rebif 3x a week the I fusion have done is because of the flare numbness down my right side... when I was first diagnosed I had the 3 day 1. Hr infusion and have been symptom free! I too was shocked and freaked out!! The support of family and friends has been awesome and my doctor is the bomb!! Love reading other people's stories!! We need to keep on keeping on!
  • Laurie   Dec 4, 2016 11:55 PM
    I was diagnosed 14 yrs ago. It primarily affects my eyes, ears, cloudy thoughts, and the horrific fatigue prevents me from having a life. My entire extended family think I don't try hard enough. That I am stuck and need to just try harder. Are they kidding me? No. when I ask for help (need to leave right after a dinner out and they say "no". So I don't go anymore. I've become so isolated. Any suggestions?
  • Alfred Miller,M.D.   Dec 6, 2016 7:41 PM
    I have encountered numerous victims of MS who when properly tested are positive for Lyme Disease.
    Lyme Disease may have the identical MRI of the brain as MS.
    Lyme Disease may produce all of the symptoms of MS.
    Every MS patient must be properly tested for Lyme Disease.
    Lyme Disease is an infection and can be treated with antibiotics.
    Alfred Miller,M.D.
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    cgaultney  Dec 6, 2016 11:13 PM
    Thank you Angie. I'm trying to adjust to my new emotional highs and lows after being diagnosed 3 weeks ago. Reading your blog helped. New normal has been in my vocabulary a lot the past week. Celeste
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    jennifer_m  Dec 13, 2016 4:51 PM
    Angie, you have no idea how I needed that sort of article right now in my life. I'm approaching my one year anniversary of my diagnosis, even though I've had symptoms for 10 years. My "new normal" involves not feeling my feet and having to get rid of my favorite wedge sandals, leaving alerts in my phone for my Copaxone shots, the world spinning clockwise at a moment's notice. Every day I'm learning more about my "new normal". It's a great comfort to know that learning about my "new normal" isn't a solo job.
  • Dianne O   Dec 15, 2016 12:22 PM
    Diagnosed 3 years ago and I've tried to stay positive and consider this "my new normal." Not easy but still trying. Getting used to all the doctor visits, physical therapy, prescriptions to take. Took a long time but finally getting to the point where I realize that I have to be proactive about this and advocate for myself, learn all that I can about new medications, mobility devices, work arounds that I never had to think about before. Stay positive!
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    knurkie  Dec 27, 2016 8:27 AM
    Thank you for posting this! I am on round 17 of my infusion process since finding out in Aug 2015 and I try to keep a brave face on for my family but for some reason that moment right before I get "sticked" I feel a bit... reflective? Contemplative? Scared??? Not sure exactly how to describe it. Perhaps it is a moment to let it sink in that you are actually battling something that is bigger than you...that invisible disease actually shows up and you choose to do something about it. Exactly! You are taking on your new normal!!! Fight on! You did an incredible job just putting together all the emotional pieces here and I just want to hug you! Thank you for describing exactly my same train of thought....or whatever clear thought I have left. LOL Happy Holidays to you and your family!!!!
  • Danny parry   Dec 27, 2016 1:17 PM
    Hi my name is Danny i just was told i have MS it has bin hard to find my new normal i was told in August about it . now i find my self getting made yet.but i want to thank you
  • Phyllis   Dec 28, 2016 11:08 AM
    I applaud you! Please do not let MS rule your life. 😃Happy to report I had my first symptom when my daughter was 8 months old, optic neuritis, and now she is 26 years old getting married in July. Funny to say this but I have had a "healthy life" with MS. Although I didn't start meds until about ten years ago, I have had my flare ups, double vision, tingling in my arms neck legs, but I always try to positive and keep going on......be well everyone!!
  • N Kincheloe   Jan 11, 2017 9:32 PM
    My wife of 33 years was diagnosed with MS in October 2016 after taking Tecfedra for about a month with many adverse side affects taking any medication scares the you know what out of her. You words are a comfort to me. I so wish that she could find her new normal
  • estrelita  Jan 17, 2017 3:51 PM
    Hi Angie, I was diagnosed 6 months ago and everything is different. I have no idea what is normal. I do know that I have had numerous changes in my inability to function as I once had. I don't know what I can do for me to accept the MS diagnosis, while at the same time try to help my family to acknowledge it. Nobody thinks I do enough to get around and function as I could before. I wish I could. I need to find a new normal and don't know where to begin.
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    ilhsa16  Jan 24, 2017 8:19 PM
    This made me actually feel like I'm not alone it hit my heart.....I'm working towards accepting my new normal.
    Thank you
  • Joshua   Feb 1, 2017 3:21 PM
    Angie,
    I remember fighting to not fidget during my first MRI, now I've got to the point that I use it as nap time, at least until they wake me to stick me with contrast.