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PaulX

Interesting Point of View

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PaulX

Substitute Cancer for a Chronic condition of your choice in the article below and it still rings true.

I share the view point, it is something I have been saying for ages.

 

The comments are interesting, you can almost tell who has the nasty condition and who hasn't by their view point.

 

 

http://www.theguardian.com/society/2014/apr/25/having-cancer-not-fight-or-battle

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We're just two lost souls swimming in a fish bowl, year after year,

Running over the same old ground.

What have we found?

The same old fears.

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Nick

So true Paul! I think a lot of people with MS start of thinking about things as having to be 'overcome' and to 'do battle' with the condition.......I know I did!!

Then of course when you say this is not a good viewpoint it can look like 'giving in' which again is incorrect!! So come everyone , whats your way of thinking about it all?

 

Nick


Edited by Nick
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Just another Warrior...........

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Procrastinating
Stumbler

Wow! So emotive and though-provoking.

 

It's so true, it's not a battle. It's more a case of learning to live together, similar to a marriage (in sickness and in health....). We have to manage the situation.

 

:moonieman:

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John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Nick

Careful Stumbler! 'similar to marriage' ! You mean like a pain in the ...? (That's me not Kay!!!) But, Yep I know what you mean, just made me laugh!!

 

Nick


Edited by Nick
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Just another Warrior...........

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lala

I like that article a lot, wish it didn't have to be written, but sums it up perfectly for me. I have been seeing a neuro-psychologist recently, who tried to use this language to me. I had to call him on it, I can't see ms as a monster, far too abstract. I don't like being told to fight it, how can we - it is us (not in the sense of taking over our lives, but like it or not it is part of us) trying to fight ourselves is pointless. I see it as a road hump that I have to monouvere around to get to the same destination as everyone else. That means plenty of planning, accepting limitations when I have to and trying to stay positive. This is what I've been learning to do anyway, doesn't always work out 100% of the time but I'm only human!

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Nick

That's a good description Lala, I like your thought about the fact that fighting yourself is pointless. I also like the way you are talking about MS as being a part of us (like it or not) I never liked the 'fighting the monster' bit either. I do think about it as a more real entity, one which seems rather 'unreal' to others. At the end of the day of course it doesn't matter how we visualise the problem, so long as it is constructive for us. A life full of road humps slows you down, but of course road humps are there for that very purpose and perhaps it's not so bad when you find a different, slower way.

Nick

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Just another Warrior...........

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PaulX

I am not going to die from MS.

It is not going to shorten my life too much.

 

The above two generalisations are perhaps the things keeping me sane and stable at the moment.

If you rule out the two above possibilities, then the rest can be coped with.

Not battled, Coped with.

As part of that exclusive Progressive club, there are no DMD's available to me, just stuff to help with the symptoms, for which I am grateful.

I can't battle it, it is something intangible, it is happening in my brain and spinal cord.

But i can understand it, I can understand what options are available to me and do my utmost to ensure I am getting the best possible care.

 

Ok, sometimes I get a bit down and don't bother, but then i get inspiration and bother the support services until i get what i want.

I'm not going to jump out of an aeroplane or run the Brighton Marathon (much better then the London one), I'm never going to ride my fire breathing Suzuki again, MS has taken that, but I am still mobile, my brain sort of works, so I will try and ensure I function as an individual for as long as possible.

Am i battling? No, I'm just coping, which is all we can really do.

I don't feel like I have given in because I never went in for the whole battling ethos.

 

I am glad someone has put in to (very good) words what i and my good lady have been saying for ages.

Lets just get real. We are not going to "win", but we are going to do our best to get along fine with it.

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We're just two lost souls swimming in a fish bowl, year after year,

Running over the same old ground.

What have we found?

The same old fears.

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Nick

Paul as a biker, have you ever read Robert Pirsig's book ,'Zen and the art of motorcycle maintenace' ? If not, you should do, it is a very useful book dealing with a lot of issues that give a bit of light to better ways of thinking.....very useful for us unfortunate mortals who seem to have (at times) run into a brick wall. Google the name and read the quotes from the author! I read it years ago when I was a keen biker myself, not realising it has little to do with bikes, it is simply a brilliant bit of work that I have used time and time again over the years and it has helped me with my own MS. The reason I mention it is that I was interested in your Sun Tzu quotes (also very good)

 

A Pirsig quote from the book:

 

We want to make good time, but for us now this is measured with emphasis on "good" rather than "time" and when you make that shift in emphasis the whole approach changes.

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Just another Warrior...........

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PaulX

Tried it Nick, it didn't do anything for me.

Perhaps it was the lack of maintenance tips. :wink2: :wink2: :wink2: :wink2: :wink2:

 

I think I have realised that you just have to get on with it the best you can.

By all means, have a bit of a moan and a sulk but then just do what you have to.

 

And do yoga. That helps more then any of the drugs.

For me at least.

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We're just two lost souls swimming in a fish bowl, year after year,

Running over the same old ground.

What have we found?

The same old fears.

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The Dragonfly

Interesting article,

 

I liken my MS as just another windy road I am taking, I cope with it the best I can. I wouldn't have ever wanted my road (of life) to be straight and narrow, instead it has a lot of twists, turns, hills, and forks. My road is wide and accepting. When I was dx, I stood a long time at a fork in the road. I started to understand why I did things and said things the way I did and I found myself doing a lot of soul searching. I've come a long way with personal stuff and I'm doing better than I ever have done.

 

Yeah, yoga and mindfulness for me.

 

 

 

 

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Nick

It is all interesting, totally bizarre that I could say that I'm really interested in MS!!! Paul's point about Yoga being better than any drug I can understand. I've never done it but until recently did do a weekly exercise class that was in two parts, the actually exercise session followed by breathing and stretching designed to be more beneficial to the mindfulness side of things. This side of things is definitely very very important!! Sorry you could not get on with the book Paul, I did used to use it's principles in the engineering sense when I was working, as a kind of 'way to solve problems ' and not get too cheesed off when things were not going well!!

 

I'm not cheesed off these days! just sometimes frustrated that I can't do what I want sometimes, the worst aspect of they being the 'getting fatigued' bit when others simply don't understand that it's all to much for me. It is however very nice when you do achive something despite it all. The calm that comes from any of the processes we have been talking about here (Yoga, mindfulness) is somewhat difficult to get across in this cynical world as it fails to be a logically understood scientific/medical process but rather a mental process involving the brain, a process that while increasingly better understood, is still one of the great mysteries. That is somewhat ironical in my book! A neurological condition that has some aspects that can be improved by using our brains, and yet something that is often thought of as 'mumbo jumbo'

 

Anyway enough! I'm just off to see my neurologist for an EDSS scale assessment!!! I'm currently residing at 6 and hoping it stays that way!!

 

Nick


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Just another Warrior...........

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Crappy
Marina

As this is a very interesting topic, and about MS for us, I'm going to move it to the MS Discussion section and pin it :flowerface:


Marina

(belated DX in June '05, SPMS)

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Oops

Personally, I have blue eyes, mousey blonde hair and MS. Could do without the mousey hair, mind... :chickendance:

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Apologies in advance if I post then vanish for a bit - I work away from home and will be back at the weekend!!!

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Skylark

Yes, the language that we use is really important. I'm still in limboland carrying the FND flag, but it doesn't feel right (GP has sent off second neuro referral)

I remember having some Metaphysical Counselling for work stress and had such a strong image of battling myself. It is highly possible that whatever is going on with my CNS now was starting to happen back then.

I'm a holistic therapist and feel that the cause of many chronic dis-eases is inner conflict, so we need 'military language' even less when seeking to restore balance!

I am a fan of Louise Hay's books. Her way of mindfully choosing positive language has helped me greatly through some traumatic life experiences.

If you've ever seen or read 'The Secret' (a rather simplistic but useful door into the world of conscious living), you'll remember that 'Thoughts create things'. The words we use are frequencies of energy that have a huge and largely unrealised effect on our life experiences.

 

Personally, my intuition is telling me that I have MS. In reply, I am telling myself that I love myself anyway and am focussing on coping with my various symptoms and continuing to ask for help, with grateful expectation of receiving it.

"All is well. Everything is working out for my highest good.Out of this situation only good will come. I am safe."

This affirmation doesn't expect a 'cure', but does help you towards acceptance and happiness - despite your challenges. It is working for me and I hope it might be of use to you. ♡

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Nick

Skylark,

I see your point about the importance of language. I do however differ slightly in my views about chronic diseases. Science is still unravelling the secrets of MS and in the meantime we need to be mindful that the complexities and uncertainties of life cannot all be cured by that science,....... yet.

This is the first hurdle we encounter. Long understood by many cultures but sadly rather poorly understood by the western world. Principally that is, that Life is suffering. Sounds harsh but this is the first thing to get over. This inner conflict is often a major cause for concern when first diagnosed with MS. Why me? Why doesn't the doctor do anything? Conflicts that do indeed have an adverse affect on our MS. (I should know, Im the very worst at worrying!)

Handling such matters can often be by coming across better ways of thinking that help those conflicts. I have my personnel favourites in the form of authors and poets and there are many different ways of looking at it.

The 'acceptance' of a condition like MS is really the next stage. This is a place where you can start to work on all the positive things in life rather that being tangled in the thorny jungle of the first stages.

After all most of us with MS have no fool proof method of determining just how things will go MS wise. Its at this point that you may start to realise that despite everything there are a lot of things you can do for yourself that will help, Practical things like Exercise, socialising and last but not least, getting the best out of any treatments that you may have access to. Attitude is everything!

 

In the Buddhist culture they describe the ‘four noble truths’. These are, Truth of suffering, Accumulation of suffering, Elimination of suffering, Path that leads away from suffering. The last part sounds good, and understanding that is the really interesting bit.

1) The true of suffering says simply that ‘Life is suffering’: Now you need to take that first statement on board as a hard fact. In other words accept your MS ....accept life! Life is all pain with or without MS! Simple! The demon is real ..........Life’s a pain and then you die..in that modern cynical jargon we sometimes use.

2) The origin of suffering lies in all the cravings of life. As an example we crave for many things we can no longer do with our MS, hence we ‘suffer’..... part of that is in our minds.

3) The Elimination of that is to get away from those cravings... In other words have a better understanding of your own MS and work with it not against it. This is ‘it,' It just a’int going to go away, so live with it, and stop grumbling. This is the real monster. ...................Not some fluffy toy!

Which leads away from that suffering. The 4th truth, quoted as..................

Right view, right intention, right speech, right action, right livelihood, right effort, right mindfulness and right concentration.

A clear and precise way of thinking which many of us who are learning to cope with MS will recognize as true. It makes the most of our situation, that being my whole point. The monster has to be accepted as factual right from the start rather than as some modern day myth. Get this right and it becomes an excellent way to progress with regard to the difficult and complex issues we all face with our MS . Trying to convey these thoughts in a clear and simple fashion without confusing the issues is also extremely difficult and I hope you may find them useful. By the way when I am struggling my real mantra is simply to remember ‘life is suffering’ .....

 

Read here about Dukkha

 

http://en.wikipedia.org/wiki/Dukkha


Edited by Nick
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Just another Warrior...........

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Skylark

Very interesting, Nick. I wasn't judging the inner conflict that I view as being the beginning of many health issues as being 'bad'...it certainly qualifies as 'Suffering' though!

Life is certainly complex and neither science nor holistic methods have all the answers for 'cures', I agree.

 

To me, the point in life is the experience of it. Your attitude toward Life reflects your skill in living. We're all practicing, every day, whether we know it or not.The language we use about our experiences also reflects our 'Life Skills' and, I suppose, where we are in relation to the Buddhist Truths, or other Religious or Spiritual life-maps.

But now my brain is asking to come up for air from such a deep discussion! How's yours doing? ;)

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Nick

Not bad ! I don't worry about it too much, just interested, Like your 'skill of living' bit. Anyway the big problem at the moment is temperature! I live very close to the sea so am fortunate that the sea breeze kicks in and cools things down a little but even so it's proving difficult!! That's a living experience in itself! and to think I used to love a really hot day!!

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Just another Warrior...........

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