Multiple sclerosis awareness
We hope that PatientTalk.Org will give an opportunity for people in the MS community to learn from their peers and gain support in the battle with multiple sclerosis. As well we hope to help introduce the challenges of life with multiple sclerosis to people who are unaware of its effects on life and health.
This blog seeks to do both. It is part of our Vox Pop series where we provide a voice to people with MS and give a podium for multiple sclerosis awareness.
In this case we use one of our Facebook Pages MultipleSclerosisTalk to ask our readers and contributors a very simple but very important question:
“What have you learnt since being being diagnosed with multiple sclerosis?”
A very open yet key question for PwMS.
I have to say we were overwhelmed by the responses to the question for which I am very grateful. We thought it would be of great value to the Multiple Sclerosis community to share just a few of the comments made!
“I’ve learnt to appreciate really simple things in life”
“Everybody’s ms is different. Thankful for what you’ve got there people worse off than yourself x”
“That people don’t give a Crap because most of us don’t look sick. Nobody says oh, do you need anything, can I come and help. On the good side, if there is one, how to fight and claw your way through life, not to be a quitter. You can only depend on yourself”
“That people don’t give a Crap because most of us don’t look sick. Nobody says oh, do you need anything, can I come and help. On the good side, if there is one, how to fight and claw your way through life, not to be a quitter. You can only depend on yourself”
“That im stronger then i thought”
“Everyone’s MS is different, you find out who your real friends are ,do what you can do when you can do it and don’t over do it.”
“How much it can take from you and destroy, your marriage of 34yrs, job, family and friends. That everyday you need to get up and fight for what you want.”
“Don’t plan your life out! Just enjoy each day as it comes. If its bad, then tomorrow is another day. Always listen to what your body is saying xxx”
” If you need help – ASK! From someone who used to do it all I have become humble and asked for help when I need it!”
“To have more patience, nobody gets MS, but an MSer!”
“That I had been misdiagnosed for over 30 years. Seems I had symptoms as young as 16. When I would be on my feet and legs for extended lengths of time. I would get horrible muscle spasms and even lose use of my legs for periods of time. When I had my first child, my legs went into spasms and pulled to my sides as soon as the Dr put me to sleep after 22 hrs of horrific labor. He came in several times afterwards and checked my legs and walking ability. He told my husband that he’d never had that happen before. If I had anymore trouble see a neurologist. That was 33 years ago. I experienced relapses from time to time. But, was told I have Fybromalgia, osteoarthritis and degenerative joint disease. Which.and all of those I do have. But, the MS was overlooked by these other complications. My MRI showed multiple lesions my new Neurologist said. How long have you had these symptoms. I replied since I was 16 and worked a 16 hour double shift as a nurse’s aid. When I finally sat down. My legs went into spasms and I could walk for days! My Dr back then said it was sciatica nerve pressure from being on m feet so long. I suffered all these years thinking it was something else. Only to find out last July I have Ms and the others as well as Chari Malformations. Uh! Life isn’t always fair.”
“That non MSers haven’t the first idea & that being strong & having a positive attitude are the only options available. I’ve learned to appreciate the little things in life, things which pass you by when you’re healthy …. Oh & to be more patient “
“Be thankful for every day that you feel good…… live life to the fullest, and never give up or give in to the demon of MS!!! Most important. …I’m not alone on this journey. .so many are just like me.”
“Who my real friends are! And get a second opinion if the first doc you see doesn’t believe your symptoms. I actually had a doc tell me last relapse if I cant walk talk or see I dont need treatment what the?”
“That neurologists are nefarious creatures.”
So as you see it varies from the very positive to people who are in the “slough of despond”.
What now interests me is what readers of this blog think is the main lesson they are learnt from multiple sclerosis? Also which of the above comments do you find yourself in agreement.
It would be great if you could share more in the comments box below.
many thanks in advance!