Page 3 of 5

Re: How to recover after job lost but having a family

PostPosted: Tue Mar 05, 2013 6:59 am
by eskimos
Interesting discussion about milk and so, which I do agree, I stopped pour a milk over my morning cereals as soon as I was dx and read all that stuff on this website. It did not help me (I am still with progressive relapsing MS, that really suck ;-), however I fill better inside I fill that my body is not so stressed so it might be something good. And after 6months I do not miss any of that product (even they taste bad now), I only miss one thing and I did not stop using milk earlier,a and one more good flat white coffee, but with almond milk taste so not bad as well.

But I would like avoid discussion about diet, medication and so. I would prefer to share experience with finding a meaning of life after dx and having family on the shoulder, how to feed them (with 1000AUD disability pension), how to provide them sometimes some excitement being a normal child not a child with father with MS. How to keep you smile stick to your face during a parent social night (for e.g.) where people just say sorry for you mate.

I am extremely proud of my kids because they cope wonderfully with having such a dad, but you know life is cruel and I simple have not enough internal strength to keep positive attitude and answer to my wife that everything will be alright, and I am dare enough to claim that I am not alone with that experience.

Re: How to recover after job lost but having a family

PostPosted: Tue Mar 05, 2013 8:35 am
by Kashu
Eskimos you have only just begun your journey; diagnosed early in 2012. Evidence suggests that it takes 3-5 years for it to stabilize so don't be down hearted :D

Re: How to recover after job lost but having a family

PostPosted: Tue Mar 05, 2013 10:49 am
by Susan Doumbos
Yes, Eskimos. Keep hope in your heart, persistence in your mind, love in your soul. Believe that you will be well. It takes time, but you will get there. We're all walking with you towards that goal. Find joy in many small things in every day; show your kids how to be happy. A good dad is one who has time for his children.

Re: How to recover after job lost but having a family

PostPosted: Wed Mar 06, 2013 7:40 am
by Lozza
Good question Eskimos. MS changes everything, but some people with little disability will go on as before, as if nothing has changed, or needs changing. Others will re-evaluate things and make radical changes themselves. Others will have radical changes forced on them. What happens when the disease rapidly disables a person and destroys their ability to earn an income? It's good to stay positive and hope for disease stabilisation in three to five years, but how to adjust in the meantime? How to keep making adjustments if the disease doesn't stabilise in the short term, and we have to deal with increasing levels of disability that can occur so unpredictably?

To complicate things, we live in a society that I think sometimes confuses self worth with net worth, and there can be a tendency to have our identities bound up in what we do. There are so many lifestyle shows celebrating the outer trappings of success, and I think there is a tendency to measure success based on conspicuous consumption. Lots of us seem to divert ourselves by engaging in consumption of various types, whether it be shopping, entertainment or eating out. What happens when we can't afford to enjoy this consumption, because money is suddenly tight, or we can't even go out of our homes without great preparation and logistical difficulty? I don't think society was always this way, but I think things started to change about 40 years ago (in Australia anyway), and this obsession with 'lifestyle' and acquisitiveness has accelerated in the last ten or twenty years.

Despite our best efforts with healthy lifestyle modifications, a diagnosis of MS can ultimately mean that we become profoundly disabled. There just isn't a manual that tells you how to adapt and make the best of it. If there is, I haven't found it, not in the bookstores, or on the web. So I think your question is a very important one, but I suspect the answers will be very individual. At the worst end of profound disability, I think the meaning of life would simply be to get your basic needs met, and to find ways to while away long hours of enforced inactivity. At that end of the disability spectrum, we may not be able to do anything 'useful' for our family or contribute to society directly. We are just consumers of healthcare, but even then (in a welfare state) we are receiving a disability income, purchasing goods and services, and providing employment to support staff. We are still helping the economy tick over if nothing else. But in that position, all illusion of control and 'efforting' to manipulate the environment, and all the worries about your family's needs would probably evaporate I would hope, because there is simply no way a profoundly disabled person should shoulder the mental burden of responsibility for trying to take care of the financial and physical needs of the able bodied. I hope so anyway, because that kind of worry when we can't reasonably affect the outcome is very distressing.

For anyone with MS who is less than profoundly disabled, but no longer very physically active or employed, then I suspect that defining a new meaning of life will depend on what physical abilities are left to them, how long they can engage in any meaningful activity without getting fatigued, what funds are available to them to engage in meaningful activities, what supports and activities are available in their community, and what activities they define as meaningful. For someone who is wrestling with the same questions as you are, I'm beginning to think that the broadest definition of what is meaningful will be the most useful to someone with MS, who is no longer employed productively in the workforce, and that might include finding activities that 'waste time' in a pleasing and enjoyable way, and to do so without guilt!

If you asked a bunch of quite disabled MSers how they pass the time and find meaning in their lives, I suspect you would get very different answers, and that probably wouldn't be helpful for you Eskimos! You have obviously given this a bit of thought - it would be really interesting to hear how you are adjusting, and some of the problems you are encountering as you adapt to changing circumstances, and find new meaning and direction in your life, post MS.

It might help others who are grappling with the same issues.

Best wishes,

Loz.

Re: How to recover after job lost but having a family

PostPosted: Sat Mar 09, 2013 1:44 am
by eskimos
Yes Yes Yes, I have finally find some really good post (Lozza ur awesome). That's what I wanted, warm up the discussion, and simply to share experience how somebody "did it". I can be the first one but maybe there is someone else dare to share ;-)). As was mentioned this is very personal experience but I do not like discover a gun powder again if you know what I mean. But if not I will be the first one and I can share my experience which might help future MSers, hope that it will be useless as the cure in the meantime will be discovered.

From the other hands I have may I ask you (all who read topic), how long did it take to start feel kind of improvement when on OMS. I know a blog ho has MS for 10 years and from the beginning he commenced OMS did 2 retreats and ... MS progress without any hand brake and he is know on wheelchair, one eye blind and lack of control in one hand. All in all this is slightly discouraging isn't it?

So do not be shy and share your journey, please.

Cheers and keep cool in that beautiful Melbourne autumn ( I think summer does not what to go away ;-)), 34C today.
Martin

Re: How to recover after job lost but having a family

PostPosted: Sat Mar 09, 2013 9:09 am
by Lozza
Hey Martin, I did read about one guy, John Blades, who modelled an amazing mindset on MS. You can read about his story here http://www.mssociety.org.au/documents/i ... t-only.pdf

It starts on page 52 of the document under "The man who put MS on the back-burner" and finishes on page 55. In the end, he used a chin operated wheelchair, but still didn't let MS hold him back. What a character. I hope his story gives you a boost.

Best wishes,

Loz.

Re: How to recover after job lost but having a family

PostPosted: Sat Mar 09, 2013 9:20 am
by korimako
Here's a short interview with John Blades, and also a link to his audio documentary The Too Hard Basket
http://www.bbc.co.uk/ouch/interviews/john_blades.shtml

Re: How to recover after job lost but having a family

PostPosted: Mon Mar 11, 2013 10:45 pm
by eskimos
Yes many people are thorough their desperation (or you can using more fancy word like .....) try to do the best possible life, I want to do the same my desperation is strong and powerful, which is OK. However why some people doing well on OMS but some not and I know they were very rigorous to the program and MS still progress very quickly, there is some other factors as well. Like Terry Welsh who overcome SPMS by eating well but different diet a bit, but probably not all people with SPMS who follow her path are ding the same miracle recovery. I have a doubt which is not bed because cause me to think more and do the best. I will survive because my family needs me, but I know that it will be desperate fight.


cheers
Martin

Re: How to recover after job lost but having a family

PostPosted: Mon Mar 11, 2013 11:24 pm
by Karen Law
Hi Martin,

You are right, not everyone manages to overcome MS, even with apparently rigorous lifestyle and diet changes. However, we know from the research that on average, people who do adopt these changes (as you have done) are 20% better after five years. THAT IS A WONDERFUL AND VERY REAL STATISTIC. This is an average, so some don't fare quite so well, but others get much, much better. And if you want to give yourself the best chance of recovery, be very rigorous in your application of the OMS recommendations - diet, vitamin D, exercise, meditation (and disease modifying drugs if you choose).
The mind/body connection is a very real part of healing from serious disease. I believe it really is important to focus on the positive, seeing yourself as first halting the progression of the disease, and ultimately recovering. By picturing yourself in this way you really are making it happen - your body will react positively to the thoughts you are having and assist your healing. Meditation will help with this too - calming the negative thoughts and giving you space just to be.
I noticed your use of language - rather like mine in those first 18 months after diagnosis. Everything was desperate (like you, I used that word a lot). Now, when I find myself using it again, I catch myself and think of a different one. But mostly, things don't feel 'desperate' any more. They feel balanced, connected, at ease.

Karen

Re: How to recover after job lost but having a family

PostPosted: Tue Mar 12, 2013 3:24 am
by Lozza
Well, life can be tough in any case. Add a debilitating, unpredictable disease like MS, and it certainly doesn't make life any easier. Hope is a powerful motivator, but in the case of an infantryman who is injured in battle, who is removed from the battlefield, treated gently, nurtured back to health, only to be returned to the hell of combat again, I imagine that the hope attendant upon healing is fairly slim. If healing from MS simply promises a return to intolerable life circumstances that probably precipitated the disease in the first place, then I imagine that would be a pretty strong barrier to healing.

A person with MS with advancing disability must recognise at some point that they transition from someone who cares physically and financially for others, to someone who is the recipient of that kind of care. At that stage they may care for others emotionally, but that may be the limit of their abilities. They need to do so without simply becoming a worrier, because surely that will do harm to their health without positively contributing to the needs of others?

Perhaps they also need to acknowledge that in order to heal, they may need to change fundamental things about their lives, such as a job that is toxic to their wellbeing, even if that may cause radical upheavals to the settled life of the family? When does the responsibility to find the best possible circumstances for one's own life and the best possible circumstances for healing outweigh the responsibility to put your nose to the grindstone, your shoulder to the wheel, and your back into the yoke?

I'm betting Martin that you will ultimately do better if you base your decisions on hope and positive creative visualisation of a happier future for yourself and your family, rather than out of fear and desperation. Are you able to picture a better future, even with MS in your life?

Surely there are OMSers out there who have had to face the realities of disability, and have made life-altering changes that were very scary and perhaps overturned a settled existence, but were based on what was best for them to produce the best possible circumstances to heal? It would be great to hear some of those stories of leaps of faith that have resulted in happier, healthier lives. Hey, I'm just asking for a friend...