[daisychainParticipant]

Hi all
If your anything like me this is what I'm like living with mm!

Extract from the article below – I'm trying hard to use the "mindfulness " technique when I'm at the bottom of the mm roller coaster!!

"mindfulness" is about living and thinking in the present

– this guy is a bit of a guru about it and I believe lots of counselling uses this technique with cbt

http://en.wikipedia.org/wiki/Jon_Kabat-Zinn

This article explains more
http://huff.to/lhKwyq

Extracts
"Meanwhile, our mind is like a drunken monkey doing its best to distract us by jumping from thought to fear to drama to anything that will keep us trapped in an endless round of worries and concerns… "What if this happens… what if I fail… if only it could be like it was in the past… what will the future be like… I have to to get to a psychic for

"Yesterday is history.? Tomorrow is a mystery.? Today is a gift.? That is why it is called the Present."
?–Anonymous

Hope this helps

Dawn x

[dan4ukParticipant]

This will help me, I feel like I'm still in fight or flight mode. Thank's.

[VickiParticipant]

Dawn

This is so helpful thanks , if Colin doesn't feel like a what if person, I am and spend my time worrying about all of the mm journey;now,past, present and future!!! 🙂

Vicki and Colin c

[sanParticipant]

So true Dawn and thank you for the info, living in the now is certainly the best way for sufferers and carers especially with an illness like this, it takes discipline to stop yourself over thinking and thinking of problems that might or might not occur, best not to think too much!! i too have agonised over this mm with Mum and have been surprised by the twists and turns it certainly taught me something, life is so unpredictable!! but loads of good things happen too and we have met many good people on this journey so far including on this forum, San xx

[mhnevillParticipant]

Hi Dawn

Thank you for this. I shall enjoy reading it. Instead this is how I try to live, but the reality is often miles away.

Love to you for your journey.

Mavis x

[dickbParticipant]

Had a chat with a chap yesterday and we discussed the illness and it's psychological effects.

The conclusion was as follows.

It is not your fault you have this illness, no one asks for it.
Don't waste time feeling guilty, you have nothing to be guilty about.
Although we have to take into account the illness at all times, it will always be there, it cannot totally rule our lives.
Manage expectations, accept you will not be able to do what you use to, accept that future ambitions and dreams are curtailed but that does not mean you can't do other things.
Set objectives, small steps with positive outlooks. If they don't happen, so be it. Move onto something else,
Stand back and reassess.

I know it sounds wonderful on paper and the reality is different, especially when the pain starts and the Chemo is not working and it's yet another hospital visit but concentrate on the good things and the good people. As our doctor said,"It's about quality of life now, not longevity". It would be such a waste to dwell on MM all the time rather than getting on with things that make you happy and give you some pleasure. Positive Mental Attitude so they say.

[daisychainParticipant]

Hi as a natural worrier it has taken me a very long time since MM diagnosis and to leanr the art of "mindfullness" – living and thinking in the present and stopping myself thinking what if?…

When I reflect back over the years – my treatment / life has not been how I thought it would pan out as a result of being diagnosed with MM – its been fat better…

The what if thought? still raises its naughty head with me, especially if I have a blip with my treatment, my FLC don't go down etc but I don't want this to ruin my day, so I find ways of distracting myself.

One thing I've noticed (and my family) that when I have a blip I engulf myself with MM research – reasearch that I have read the hour, day, week, month and even the year before which adds to my worries of what if… and really does stop me living for the day.

Learning the art of mindfulness does help me to emotionally live with MM and live and think in the present – I don't contact my consultant Professor Gareth Morgan (and PA!) at the Marsden Sutton as regularly as I did (I think they may disagree though lol)so something must be working…

Good luck to all of you with your emotional journey

Dawn x

[daisychainParticipant]

totally agree
Dawn x

[daisychainParticipant]

I totally understand…

the reality is that no-one really knows what's going to happen next in their lives regardless of whether they have MM or not –

for me its also finding ways to manage the treatment on a daily basis and going to the hospital so that it doesn't bring me down emtionally. It's not easy

I always thought I did know what was going to happen next, was a bit of a control freak – a real planner / organiser.

Dawn x

[daisychainParticipant]

try this… when someone says

What if this is going to happen?

and its a negative comment – respond by saying

but what if it doesn't?

Simply to do but effective for changing mindset (ps mindset won't change overnight!! again youll find councellors use this.

I use this with my kids when they are having a negative moment.
Dawn x

[daisychainParticipant]

I whole heartily agree – so very true.

best wishes

Dawn xxx

[dickbParticipant]

Hi Dawn,

There are a lot of people who need to plan the future to the last detail. Unfortunately, we can't really do that anymore. What we can do is plan the next day or week or until the next hospital visit. We can also plan for the long term on the understanding it may not happen. But that's what governments and Defence ministries do, they put in place contingency plans, the majority they know won't happen but you never know.

The emotional trip of going to hospital I well understand, I took a bag with me for the first few trips incase they told me I was staying in. Now I negotiate. They wanted to put me in the week before my 50th. After a brief discussion in which they admitted there wasn't really much they could do in the short term, they let me stay at home. It might seem like I'm acting like a petulent child but it's our lives and bodies. We can't help what we have but at least let us have some normality.

It's time to take pleasure from the little things. For me after I came out of hospital the first time, my wife took me for a walk through the forest surrounding us. First day was 3 km, 2nd day was 6km, 3rd day was 10km. despite being 15kg below my healthy weight, still suffering from Pneumonia and a recent bout of Diorrhea I did it.

Stuff being the top dog in the company or having a new BMW on the drive, I settle for friends and family, after all the other things are transient.

Richard

[PerkymiteParticipant]

Nicely put Richard, well done.

Kindest regards – vasbyte

David

[rebeccaRParticipant]

Thanks Dawn,

I find mindfulness still quite hard to do though I am trying.
Someone on here, I think Eve, once posted the saying

"Worrying does not empty tomorrow of its troubles.It empties today of its strength"

It is so true that is has almost become a mantra to me on a daily basis and I passed it on to a friend (who is very troubled) and she too finds it very helpful to remember this – almost as a prompt to bring you back into the present.

[Author]

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