A thing I am pretty sure about is, that every MS is different to the other. Maybe not just “the big three” (PPMS, SPMS, RRMS) are existing, but dozens or even hundreds of forms exist. They seem to be as individual as the patient.
Its one Reason why Scientists can´t help us
Unfortunately I think they will never be able to and this makes me really sad. Sure, the effects of this disease are similar. The myelin around the nerves is sclerotizing and this has similar effects, but the reasons behind it and the healing(!) are completely individual.
Sure, there are many things that can help!
But the key to healing lies within everybody her- or himself. Yoga, Meditation and a careful diet are important and can help, but even though they might help a majority of patients, its not guaranteed it will help you or me.
We are as individual as our disease.
Take me as an example. From time to time I realize how sensitive I really am. I am definitely hyper-sensitive. I am sensitive on interactions with other people, I am sensitive on nutrition, I am mega-sensitive on any pharmaceutical product and on and on.
Was it the even the reason for my MS?
Or did I become so sensitive because of my condition? What was there first, the chicken or the egg?
I am not the only one
Basically every other MS-patient I got to know in the years since I got diagnosed 2012 (and over the years these were quite some) had a similar attitude.
Well, I am not. After the second night with few/bad sleep, I was cruising through the beautiful 3rd world-jungle of the island of Sumba on the backseat of a local Ojek-driver (please note, its NOT a Go-jek-driver, it seems to be the precursor) and while I slowly started to realize that I am really knee-deep in an amazingly beautiful environment, I had a hard time not falling off that bike.
If you ask a local person “Possible?” and the expected answer is as simple as “yes” or “no”, you might not get a true answer. The answer you might get is the answer that the person you asked thinks(!) you want to hear.
Probably its an act of politeness or even respect, but the answer is not necessarily true in a western meaning and I am a westerner.
Let me give you an example
If u ask how a third person is doing and the asked person thinks you are really interested in the wellbeing of the third person, you will probably get the answer “she/he is doing good” – even if the third person is quite sick.
Whats your problem with something minor like this?
My personal problem with such a minor adjustment like this is that I am really having a problem in building up trust and adjustment after adjustment is making it extra-hard for me to trust.
What does this have to do with Multiple Sclerosis?
The MS shook me in my foundations. The diagnosis literally took away the base that I was standing on and left me in a free fall. Loosing something quite essential like my ability to walk, slowing down my previously rather eloquent tongue and so much more.
So I long for trust – maybe more than ever before in my life.
MS isn´t expainable. Nobody knows where its coming from, nobody knows where it may lead to, nobody knows how hard he or she will suffer from it. Maybe the biggest and most important enlightenment I learned in that year in Bali now, is that its affected hugely by ones mindset.
So how do I change my mindset?
Hm. Easier said than done. But I think meditation and learning to love oneself are a good way to start.
Simply meditate and we get healthy again?
Unfortunately no, but it helps. Many other steps have to be done.