Search Discussions

Main Content

  • MSconnection
    People living with MS are often familiar with, and at times masters of, resiliency. Resiliency is the ability to adjust to misfortune or change; with the many day-to-day unknowns of MS, share with us a time that you needed to embrace resiliency. What helped you get through the difficult time? 
  • maria1
    Gee, I wish I could say I had that. But no, I remember no time in all these years that I was functioning and able to use my wits to move on. I remember the second big hit from ms, when i was going blind could not hold myself up, nor walk, nor think, nor do anything. The doc put me on Betaseron and between the ms and the drug i was levitating at night a foot off the bed, sleeping in sweats under five covers freezing. The days sitting in front of the tv, not seeing what was on. I was in a stupor, semi sedated? out of it. There was nothing going through my head, in the twilight zone, on another planet. Un able to eat without throwing up. Days, weeks, months of the same stupor, frozen in a place that was like being locked in a glass cage, unaware that life was moving on. It was a though i was paralyzed in mind and body, suspended animation. For more than four years until being forced to leave the home i loved in NJ, moving to MO where i spent momths outside sitting in the sunshine, still in a stupor. And through that stupor i felt the warmth of the autumn sun. Fortunately, the move was when MO was experiencing record warm weather thru Feb and my body soaked up the sunshine and i began to wake from the 'no woman's land'.

    ​So maybe it was brain resiliency that knocked me out and kept me frozen in time, but there was no conscious effort on my part, just my brain shutting down all the systems so i could not hurt myself.
  • maria1
    So, after writing all that and rereading the discussion I feel a certain anger, like my reaction to the 'people with ms are masters of resiliency' is a patronizing statement.

    ​I think we all adjust to misfortune and change, eventually, but only after we find that resistance is futile and a waste of energy.
  • ssanderson15
    I appreciate your honesty about this statement. Personally, I feel that humans in general are masters of resiliency, but when faced with uncontrollable adversity, like MS, some step up to the plate and others may not. We all have our own experiences and I am a firm believer that resiliency is 100% individual. From where I am sitting, your resiliency shines through your continued fight to live with MS. You may not feel resilient, but your presence suggests otherwise.
  • gabrielle519
    I have a lot of resilience. I was a health happy mid twenty year old when I was diagnosed with apparently agressive form of MS. Everyday I got worse and worse. The depression was terrible. Then I went to the Mellon Center at Cleveland Clinic. That day my life changed. I was wheeled to that appointment in a wheel chair. I did weeks of physical therapy and started tysabri. I couldn't work before but now I work full time. I live alone with two dogs. I walk a lot everyday. I had resilience and a drive or fight. I fought hard and now I continue to fight everyday because somedays it's hard to get up and go to work. It's hard to live with a disease that you can feel every moment of every day but others can't see it.
  • nerij
    You are so so so brave! Keep fighting :)
  • nerij
    I was diagnosed with RRMS in 2015 at the age of 20, experiencing my first symptoms at the age of 19. I am a very resilient person, I did not let MS get in the way of playing collegiate field hockey or pursuing my dream of becoming a physical therapist( I am in my 5th year-1 more to go and you can call me doctor!) However, I have a hard time still with the acceptance of the diagnosis. It brings me to tears most nights just thinking about it honestly. I am so so scared for my future, I want to be able to work as a physical therapist and help people regain mobility and function- but how will I be able to do that if I will someday end up lacking mobility and function? I have so many worries I think about daily. So, yes I have not let the disease get in the way of my dreams, but that doesn't mean I am not afraid of it or that I dont have nightmares about it. It's not easy and it's not going to be. Sadly this is the fight we all did not sign up for. What works for me is writing poems when I am down. I just let my creative juices flow- it is a good way to get the negativity out of the system in a way that is creative. When I get stuck in a dark place I know that all I have to do is start typing what im feeling and it helps me to clear my head.
  • ciyara
    its really wonderful to see how you were fighting against the disease and acheived your dream. if you can do this much , we are sure that you will  be able to go ahead and fullfill your goal of helping others with physiotherapy. its true that the disease is not easy. but as we all know worrying abiut it will never help us. so keep yourselves happy and busy. we are waiting to see the poeems you scribbled down...
  • oldhippie
    I don’t know if you remember me or not you are on my contact list from back when this all started for your it is to see you have not given in. Can I send you a note sometime?
    oldhippie
  • cantstopwontstop
    i love your story, follow your dreams Miss PT!
  • msjuleso
    This is what I needed. I was just given the official diagnosis yesterday. I’m just in complete disbelief but seeing posts like yours gives me hope! This is not the end our story just a new chapter.
  • bubbadog66
    Read this discussion when it was first posted...didn't feel inspired to add my two cents at that time.

    For me resiliency comes in the form of those unpredictable moments where i redirect my thinking so when my anxiousdepression REALLY kicks in to the point and dark place of "thinking" it a good idea, good solution, to hurt myself or others i don't make the already "bad" & challenging situation worse than it already is. Getting through those less than graceful dark moments and realizing the catastrophy isn't as bad as i think...so i move on and do my best to hold my head up high until that next challenging moment like that arrives.

    Really wishing i had a copy of MY edition of "MS for Dummies...", need the step by step instructions for this new life i tell ya!!! 
  • bernicestockstill
    you are really strong person, that live with this and continue your lifestyle with this problem) 
  • Chug
    I have to use resiliency every day. I was diagnosis in 2007. I had a neurologist that didn't believe my leg symptoms. I was unable to walk. It would take me about fifteen minutes to walk to the bathroom that was three or four feet away from my bed.  I had problems with my legs and spasms. Oral pills didn't work. I was in pain for over two years. I had to deal with was the MS or diabetes causing my leg issues.  This went back and forth between the doctors. It was finally determined, my MS was causing my leg drama. A drug call PriAlt was introduced to me. I had a five day trial. It worked. I thought everything was okay and set to go. How about my insurance didn't cover anything but two thousand dollars of the hospital bill. I had to wait. My waiting was getting disability. I applied in 2007. This meant 2008 to disability officials. So, the wait was on. I didn't get it in 2011. In all that time, I was in pain. Once approved, I had my pump implant. My cocktail was PriAlt and Baclofen.

    Fast forward 2017, the pump needed the battery replaced due to time. No big deal, I thought. The pump was replaced and seven days later, it was removed. I had an infection. This is the month of August 2017. I spent one week in the hospital and one week at home, on antibiotics. Fun!!! Actually, I thought of removing the pump all together. Wrong. While waiting for my current implant, my leg symptoms are returning, My legs are hyper sensitive to touch. I can't cross my legs at the ankles. The spasms are returning. The stabbing, prickly, burning, and nerve ending pain are back. I'm scheduled to have the pump and medicine surgery in March 2018.  So, this should be the end of my story.

    Here's my resiliency. While all this is going on. I've had surgery done to both my thumbs, both carpal tunnels, two partial knee surgeries ( which has turned into a full knee replacement), and needing surgery on my right foot, with the possiblity of having back surgery from a previous back surgery. My icing on the cake. For the last four years, I've been my parent's caregiver. My mother passed away in 2015. Having MS and taking care of my father calls on every ounce of resiliency I can find. Sometimes, It's in the form of a pray. "Lord, give me the strength to carry on."
  • maria1
    Chug, you are remarkable, and so is you smile. thank you. maria
  • cantstopwontstop
    Being diagnosed less than a month after my 25th birthday I really had to embrace the resiliency. Working in healthcare we see so many cases, good and bad, disabled... I won’t lie. The words MS made me think I was headed for a wheelchair really soon.

    I embraced resiliency because I knew if I gave up the fight I would lose myself. I had went though my whole life healthy until I had a seizure for the first time. I didn’t want to take medications. Everything was so completely unknown for many months June til December. Two neurons later and many labs and imaging led us to our answers.

    I found the joy in the little things. The comfort and warmth of my family and friends. The ones I could turn to when I was just feeling down and out. I continued to work out and  lift my weights and do cardio. I told myself I wanted to continue on like I never knew (without being unsafe and not monitoring my condition) and that’s what I continued doing. I put my faith in God, and said he was going to carry me through whatever. I love music, and I love burning candles... Yankee to be specific. If I felt down and out, I would take a hot shower or just lay down and relax. 

    Researching, educating myself, and talking to others also helped me embrace the change. It helped me feel not so alone. The first person I spoke to with the same RRMS as me was a patient where I work. I have slowly latched on to these support sites. Reading others stories makes me feel thankful and fortunate, not only for the way my cards were dealt, but that I can help others feel better, just by chatting about having the same “inconvience” 

    with all the ways I embraced my diagnoses I got some great news last week from my neuro about how mild my case is. I am very thankful. I will continue to live my life to the fullest, and that is what truly keeps me going. 

    Oh, and those power naps.. can’t forget those. Xoxoxoxo 
  • justdiagnosed
    Suppose I’ve got that all ahead of me tbh if I end up bad what gets me through thinking about that is the option of a Swiss clinic because compared to how life was 9 weeks ago I can’t see a point being bedbound or having a electric wheelchair and being half brain dead I can’t see a quality of life there that would make it worth clinging too I know that’s worse case scenario stuff but as I’m learning bit by bit it’s a very reall possibility now future is down to a roll of the dice 
  • amaback

    i love your story, follow your dreams Miss PT!

Related Content

You may find some of this other information useful