SOS FOR MOM WITH MS Campaign

"Help me" are the hardest words to say. BUT I STAND HERE SAYING HELP ME PLEASE. I am not okay

I have had MS since 2011.

MS is mean and nasty, it blows out the candle of hope, it stares you down in the mirror stating "I will WIN just give up"

As I write this I can barely see my screen as my MS is again trying to steal my sight from me. AGAIN! The very steroids and medicines I HATE gave me back my eyes. It took 5 days. My eyes have been like this for a week now...Time is ticking. I cannot see like you do. I cannot see how I saw last month. I cannot lose my sight.

I sit typing with my coke bottle reading glasses set to about 100 magnification, and as I type my hands and fingers tremor involuntarily and I battle to hold my phone still, or even try and eat dinner. Tremors and food don't mix.

I cannot swallow due to a new side effect I have never had before. I cannot tell you how close I have come to choking, by myself at home. It is so dangerous and happens so randomly New side effect MS 1, me 0

My mobility has been bad since diagnosis but it has become so bad that I can NOT walk up and down even a single step, nevermind a flight of stairs. The saddest part is that people laughed at, belittled, minimised. But when Christina applegate and Selma Blair get MS and all of a sudden everything I was belittled about, scoffed at...is now a worldwide publicised fact that walking up and down stairs are horrific events for MS sufferers. But why when I was diagnosed in 2011 is it only now in 2023 and 2024 that their fame has put 2 very prominent faces as the ambassadors for MS sufferers all over the world and made it real. That is not acceptable. I have been saying this all along!! And I am scared that it may be too late to get control of my legs and stepping up or down or getting my eyes back. It is terrifying.

I have issues with spasticity, neuropathy, and with pins and needles that burn my feet and hands, or lose all feeling in one of my limbs. I fall all the time. I am covered in bruises all the time.

My memory and cognitive deficits have become far more noticeable and Treatment for that: MRI, LP, Steroids, Rebif, concerta. I even forget the names of people I've known for 20 years.

The pain and spasms I'm in all the time are excruciating and nothing helps except in-hospital schedule pain meds, which cannot be given at home. Trigeminal neuralgia is caused the suicide disease for a very real reason!

I am NOT okay. I'm tired of saying I'm okay to make other people feel okay. I am NOT okay because I'm just not okay, and I can't explain it or describe it because it is unimaginable and traumatic.

I'm losing my sight.

I'm losing my mobility.

I'm losing hope.

I'm losing me a little bit more every day.

We lost our medical aid due to finances...2018 job loss; medical aid gone, car gone, home gone. We just couldn't keep up....because of ME.

I know it is Janu-worry and that this economic climate is in a very dire situation but I am asking PLEASE, if anyone can assist no matter how small....please help me try to reach the R16000-00 costs for testing, Treatment, day clinic half day for Lumbar puncture to see how badly the protein level has risen in my spine csf possibly causing all of these new and aggressive symptoms and side effects.

I have been given a time frame of government hospitals that will take, from walking in to get passed all the admin and maladministration, to the time of actually having an MRI and access to biologicals Rebif Treatment will take seven months. In 7 months I will be blind.

Please help if you can.

THANK YOU. no matter what happens when reading this... I thank you, I appreciate you.