I'm new here!
Hi, my name is SaylorPresley0809. I was diagnosed with a transverse myelitis and experiencing my fourth relapse; tightness around my waist and feeling of sleeping on a rock. Do I need to go back to hospital?
"It started one morning with severe pins and needles in both my feet that just wouldn't go away, and eventually travelled up my legs and body. Within the space of a week I was completely paralyzed from the neck down.
"I was admitted into intensive care and spent a total of four months in the hospital, undergoing various tests, lumber punctures, MRI's and undergoing rehabilitation to learn to walk again. I initially was diagnosed with Transverse Myelitis but I relapsed again within that year and my final diagnosis was 'Severe Rapidly Evolving MS.' Last year, in 2022, I suffered an unpleasant relapse and found out I had another large lesion, causing problems with my mobility. Now I'm using my wheelchair far more and many other mobility aids help me get through daily tasks.
"It's hard living with MS as it is such an unpredictable condition. Life planning becomes so challenging as I'm constantly thinking about fatigue levels and the pain/weakness. I could be out and about using my crutches then all of a sudden needing a wheelchair as my right leg has 'gone dead' and struggling to walk. I am proud to use all my mobility aids and help promote positive inclusion for everyone who suffers with MS and other disabilities. I will not let MS or disability take away my character & style! I strive to retain as much of myself as possible. I'm Hayley and not the illness!! I will use whatever mobility I need on the day or even by the hour!!!
"I am proud of myself and all I have been through and truly aim to live my best life with as many mobility aids I need to get through each day. I hope others will also learn to adapt to their own unique MS situation and try to not let MS get in the way of enjoying all this life has to offer. Keep on warriors, you are stronger than you give yourself credit for!!"
The most amazing thing I see in myself and others with chronic pain like CRPS is our courage to do all we do, knowing the firestorm of relentless pain and suffering that awaits us day in and day out.
Yet, we still get up every morning, tip our cap to the hellish pain and despair that awaits, and accomplish all we can; we put on a brave face and struggle with a smile everywhere we go. We still ask ourselves if going out tonight is worth the few days it will take to recover. But to feel normal, if only for one night, is worth the price of admission.
While most are scared to fail, crippled by it even, we march on, failing hundreds of times for every accomplishment we can muster. Yet, here we are, continually beating ourselves up for all the things we can't/ failed to do and not patting ourselves on the back for the courage it takes to do what we do.
Instead of seeing the beauty and scarcity that kind of courage requires, all we see is our inadequacy. So, we strive for perfection constantly in our lives, not because we want to be but because we feel like anything less is admitting we are flawed. Flawed by something we don't understand, flawed by something we didn't cause nor ask for, yet flawed non-less.
We're tired of feeling inadequate, judged, doubted, and misunderstood; I know I am. And want to be seen for who we are and aspire to be, not what we suffer from.
Although we can only acknowledge our true strength, endless courage, and untapped potential when we realize, accept, and move past the illusions we hold. There is a purpose in our pain; let's identify it and help one another realize its potential together.
It's been really difficult, keeping a positive mindset through all of this. But I'm glad to find a place to talk about my journey. With others going through the same
This is Booba, whose given name is Mera, but none of our babies, human or otherwise, ever get called by their actual names. She's the baby of our seven cats, and she's always right next to my wheels. She even likes to "help" me in the bathroom by licking my hair and pulling the washcloth off my face to make sure that I'm still there. She sleeps on my legs and, at times, on my head.
It's funny what we all find comforting, isn't it? 😊