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?
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.
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.
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.
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.
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!!!