Personal message

HELP me please are the hardest words to say. They knock you down and make you feel utterly broken and embarrassed. But I'm asking from the bottom of my heart....please help me.I have had MS since 2011. And I am in a fight now for my body like I have never been before. My world is shattering around me.

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

 After a week of tests and the most horrendous steroids and meds my eyes have slowly come right to the point where I dont have to use 3x magnifying glasses to type! A small victory so appreciated, although the side effects of the meds has left me with incredible pain and other complications. The very steroids and medicines I HATE gave me back my eyes but opened the lock to Pandora's box.

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. The hope is that disease modifying biological treatment rebif will again bring the tremors to a stand still.

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 oesophagal spasm and detected hiatus hernia make swallowing so difficult and painful, and it lasts hours in tears and pain and a sheer devastation of your entire body. It feels like a heart attack and even crying hurts. This has to be sorted out because it is so dangerous, especially home alone. I choke on even water and its terrifying.

My mobility is still so bad that I can NOT walk up and down even a single step, nevermind a flight of stairs. The saddest most hurtful part is that people laugh at, belittle, minimise. But when Hollywood celebs get MS all of a sudden everything is now a worldwide publicised fact that walking up and down stairs are horrific events for MSers. But why when I was diagnosed in 2011 is it only now in 2023 and 2024 that their fame has put 2 faces as the ambassadors for MS sufferers all over the world and made it REAL. It is too late to get control of my legs and stepping up or down or getting my eyes back to 100 percent. Its an impossibility. It is terrifying. And I face the rest of my life like this.

I have severe oesophageal spasticity, neuropathy, with pins and needles that burn my feet and hands, or lose all feeling in one of my limbs that I fall all the time. I am covered in bruises all the time. I can never trust my own body.

My memory and cognitive deficits have become far more noticeable and treatments can only be more steroids, biologicals or even possibly concerta. I forget the names of people I've known for 20 years. I forget what I am doing while I am doing it and it gets so bad that I have massive panic attacks because I just feel completely lost and broken.

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 called the suicide disease for a very real reason! And it's hard to convince yourself not to listen to that label of "suicide disease". 

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

My sight is not 100 percent.

I'm losing my mobility.

I'm losing all hope now.

I'm losing me a little bit more every day, and every day that chunk that gets lost is bigger and bigger.

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 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 to reach the additional costs needed for me to try a year on private medical to get my body and mind back to as normal as it can be. Government hospital waiting list is too long, the MRI is booked up for months should I need another one and they do not prescribe biologicals which is the only long term treatment that previously helped delay the onset and severity of side effects and symptoms of my broken immune system.

In negotiations with a medical aid provider as MS is a PMB benefit, but as I don't work this is a huge expense I just can't manage on my own. They are also considering wavering the initial waiting period where pmb is only gov hospital if I pay a full year's premiums immediately. The plan is the entry level hospital and day to day medical aid and will cost R2778 per month for 12 months waiting period hopefully wavered if I can raise the funds to do that bulk payment. If I can pull off that miracle hopefully most of the other treatments will all be covered by medical aid instead of desperately trying to find cash monthly.

The biologicals treatment of 3 injections per week for 3 months is R24000.

I need optometric intervention in terms of bifocal spectacles due to my eyesight and this on special at the moment is R2300.

And that does not include the in hospital treatment for my oesophagus spasm and hernia, and colonoscopy exploratory investigations at R11000 and R7000 (excl dr and anesthetist) after more lesions found and found to be active, with increased protein levels in my cerebral spinal fluid indicating that my MS has indeed progressed and is bordering on secondary progressive MS SPMS, instead of relasing remmiting MS RRMS.

The side effects and symptoms are far more severe, they are taking longer to respond to medications and the duration of the relapses is entering far lengthier periods of suffering.

I am in pain. All the time.

I am terrified. All the time.

I have lost hope and faith because no matter what I do I seem to be hit by a huge concrete barrier I can't cross.

I don't want to be disabled.

I don't want to lose my sight again.

I don't want to die from complications, or become in such a state that I don't get to be mom to my precious kid as he forges a beautiful future and life for himself....all while worrying about what next catastrophe can befall his mom. I have let him down so many times since 2011, and now at nearly 21 years old he is my biggest worrier and warrior; and he needs a mom that isn't wonky, or embarrassing or incapable of even walking up a step.

PLEASE if you can help in any small way, please prayers are welcome, any donations no matter the size are so welcome and appreciated; and please share this backabuddy campaign to all your social media platforms that I might just reach a miracle? I thank you for your time and help in ANY way.

Thank you from a very desperate, scared mom.

THANK YOU. No matter what... I thank you, & I appreciate you greatly.

Please SHARE the campaign as far as you can! Thank you and Bless you all!

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