Hello OMS people,
You may have just started the program and are heavy with symptoms, or further along going two steps forward, one step back on the path to wellness, or you may be one of the growing number who has reached destination recovery, greetings to all.
The realisation that once you’re diagnosed with MS then you’ve got it for life can be the cause of such gut wrenching sadness can’t it. But on the flipside have you thought about using recovery as a motivator for change – your own firstly, and then giving something back to community secondly?
I think the period leading up to and including the actual formal diagnosis is one of the most profoundly sad times in a person’s life. Yes, there’s relief at finally being able to put a label on the basket of weirdo symptoms but then the grieving process starts for the old you. The ‘poor me, poor me’ mindset takes over for a period until it is cathartically released through our tears and then you start to look for the positives and opportunities in the situation. That was my experience of diagnosis, anyway.
I visited my old MS group for the first time in three years last week. Arriving slightly late, it was a very sorry sight indeed. There was one wheelchair but the number of wheelie walkers seemed to have multiplied. Unfortunately, the overall condition of the group definitely looked to have declined in my view. Of the people I conversed with all expressed how well they were doing but that seemed just a façade to the underlying ‘poor me, poor me’ attitude that lived just a fingernail beneath the surface.
One lady told me that she found herself dancing one night and then suddenly was overwhelmed by tears as she wondered how long until MS would rob her of that pleasure.
It was tragic to hear them say time and time again how well they were doing in one breath, even how lucky they were. But a moment later they’d reflect on some ghastly story, like the one about their last significant relapse that robbed them of all their abilities which meant they were going to have to rely on MS Society to help them retire early. It struck me that some people never get over the ‘poor me, poor me’ diagnosis stage.
So my friends, I think that there is a great difference between us - our strong will to do whatever it takes to overcome this disease - versus the majority who just want to sit back and accept their diagnosis, their terrible symptoms, and go deeper and deeper into being dependant and a burden on others for support.
How lucky we are!
Moving to the second motivator for change – giving back to community. After three years’ away from the group I thought I’d be able to give something back by sharing my recovery story to an MS community that had validated and supported me in the early days of the disease. I thought they’d see me as a living resource, a beacon of hope for their own recovery. Well, I guess I went there looking for a pat on the head but ended up feeling as though I’d walked through a pat – a cow pat that is!
Presenting to the group on the day, there just happened to be a young dietician but her knowledge about the changes to Australian dietary standards, saturated fats, and MS diets was so underwhelming that it made me want to scream through the entire hour long presentation. To illustrate this point, one MS patient was given the okay by the dietician to replace the fish oil tablets that caused her reflux with cheese as alternative source of omega3. I nearly fell off my chair. My contribution to the discussion was as follows:
• I tried to highlight the emphasis of the new dietary guidelines towards selecting foods that were rich in good fats and oils.
• I tried to explain about the importance of taking in non-animal saturated fats with a melting point below 37.5 degrees to build flexible cell walls that better respond to disease.
• I tried to point out the significant Vitamin D research that showed the correlation between higher levels and reduction in relapses and general infections but another MS patient challenged me and said it wasn’t conclusive and that they were still doing trials.
I felt extremely blessed to be able to skip away from the pall of the meeting and drive home in the glorious afternoon sunlight to be with wife and kids.
Now I finally understand why so many recovered people choose to not share their story publicly. Nobody will believes you! I have documented proof of lesions in my brain and spine separated by time and space, I have positive Oligoclonal banding in my spinal fluid, those around saw me overcome by fatigue, limping at least once a month, tremoring, forgetting words and yet now the comment I get most is ‘so you’re all better since your brain operation’.
Despite the overwhelming scientific evidence of the OMS program’s benefits, combined with the testimonies of recovered people, the only ones who get it are the good people here! So I say to you, regardless of where ever you are on the journey to wellness, I want you to know, in case you didn’t already, that you are validated! I salute you all for having the courage to push through the crappy symptoms, to challenge your diagnosis and choose a future so bright you might just have to go out and buy a pair of dark sunglasses!
You may have just started the program and are heavy with symptoms, or further along going two steps forward, one step back on the path to wellness, or you may be one of the growing number who has reached destination recovery, greetings to all.
The realisation that once you’re diagnosed with MS then you’ve got it for life can be the cause of such gut wrenching sadness can’t it. But on the flipside have you thought about using recovery as a motivator for change – your own firstly, and then giving something back to community secondly?
I think the period leading up to and including the actual formal diagnosis is one of the most profoundly sad times in a person’s life. Yes, there’s relief at finally being able to put a label on the basket of weirdo symptoms but then the grieving process starts for the old you. The ‘poor me, poor me’ mindset takes over for a period until it is cathartically released through our tears and then you start to look for the positives and opportunities in the situation. That was my experience of diagnosis, anyway.
I visited my old MS group for the first time in three years last week. Arriving slightly late, it was a very sorry sight indeed. There was one wheelchair but the number of wheelie walkers seemed to have multiplied. Unfortunately, the overall condition of the group definitely looked to have declined in my view. Of the people I conversed with all expressed how well they were doing but that seemed just a façade to the underlying ‘poor me, poor me’ attitude that lived just a fingernail beneath the surface.
One lady told me that she found herself dancing one night and then suddenly was overwhelmed by tears as she wondered how long until MS would rob her of that pleasure.
It was tragic to hear them say time and time again how well they were doing in one breath, even how lucky they were. But a moment later they’d reflect on some ghastly story, like the one about their last significant relapse that robbed them of all their abilities which meant they were going to have to rely on MS Society to help them retire early. It struck me that some people never get over the ‘poor me, poor me’ diagnosis stage.
So my friends, I think that there is a great difference between us - our strong will to do whatever it takes to overcome this disease - versus the majority who just want to sit back and accept their diagnosis, their terrible symptoms, and go deeper and deeper into being dependant and a burden on others for support.
How lucky we are!
Moving to the second motivator for change – giving back to community. After three years’ away from the group I thought I’d be able to give something back by sharing my recovery story to an MS community that had validated and supported me in the early days of the disease. I thought they’d see me as a living resource, a beacon of hope for their own recovery. Well, I guess I went there looking for a pat on the head but ended up feeling as though I’d walked through a pat – a cow pat that is!
Presenting to the group on the day, there just happened to be a young dietician but her knowledge about the changes to Australian dietary standards, saturated fats, and MS diets was so underwhelming that it made me want to scream through the entire hour long presentation. To illustrate this point, one MS patient was given the okay by the dietician to replace the fish oil tablets that caused her reflux with cheese as alternative source of omega3. I nearly fell off my chair. My contribution to the discussion was as follows:
• I tried to highlight the emphasis of the new dietary guidelines towards selecting foods that were rich in good fats and oils.
• I tried to explain about the importance of taking in non-animal saturated fats with a melting point below 37.5 degrees to build flexible cell walls that better respond to disease.
• I tried to point out the significant Vitamin D research that showed the correlation between higher levels and reduction in relapses and general infections but another MS patient challenged me and said it wasn’t conclusive and that they were still doing trials.
I felt extremely blessed to be able to skip away from the pall of the meeting and drive home in the glorious afternoon sunlight to be with wife and kids.
Now I finally understand why so many recovered people choose to not share their story publicly. Nobody will believes you! I have documented proof of lesions in my brain and spine separated by time and space, I have positive Oligoclonal banding in my spinal fluid, those around saw me overcome by fatigue, limping at least once a month, tremoring, forgetting words and yet now the comment I get most is ‘so you’re all better since your brain operation’.
Despite the overwhelming scientific evidence of the OMS program’s benefits, combined with the testimonies of recovered people, the only ones who get it are the good people here! So I say to you, regardless of where ever you are on the journey to wellness, I want you to know, in case you didn’t already, that you are validated! I salute you all for having the courage to push through the crappy symptoms, to challenge your diagnosis and choose a future so bright you might just have to go out and buy a pair of dark sunglasses!
