Hey,

As some of you know I have been having a really bad RSD/ pain time recently - the pain is miles up, the spasticity is destroying me and I am just struggling with everything... it's become a battle to even get out of bed for an hour (and pressure sores, absesses and infections do NOT help). Anyway, I emailed a very close friend of mine (who knows about RSD) saying I just couldn't handle this any more and I hate what those 3 small letters have done to my life.... and this is her reply - which I thought was brilliant - it really made me think (I removed the things that would identifiy).

So, if I have any advice for you - and yeh, yeh, I know you're not asking for any, but you're getting it, OK! - it would be just forget about the rest of the world and get to know where you are. Which you know big time. It sucks where you are. The next step of the way is to know that actually you can't change the reality. Which you also probably already know. The only thing we can change is how we react or accept what is.

Our ability to accept things as they are whether they are how we'd like them to be or not is the key to whether we experience happiness or suffering. And with this in mind, all suffering is a choice. (Which is something alot of people have alot of resistance to hearing.)

Alot of it is to do with attatchment. If we are attatched to how we want something to be when it's not, we suffer. If we can recognise that we would prefer something to be different, but that it's not, then we experience more peace/happiness.

So simple in theory. So f***ing difficult to put into practice. And so sorry to go all preachy and Buddhist on you!. Thinking about deleting the whole thing. But I'm not gonna, cos I reckon this human path thing is tricky enough at the best of times and the more friendly reminders we get of how to get through it the better. And you have the option of ignoring me, so that's OK.

Every time I dance now I feel grateful for the fact that my body moves pretty much how I ask it to and awareness for how s*** it must be for those of you that have bodies that don't.

Having danced, I was thinking about what it means to be unable to move. It means there is a hellova lot [you] can't do. This in turns provides the ultimate opportunity for learning how to Be.

I was wondering about pain and realised that it provides the opportunity to be constantly aware of the present moment. It provides the perfect opportunity for practising non-attatchment and non-suffering. These are the biggest lessons we can learn in life, Sweetheart, and you've been handed them on a dirty plate.


There was more but this was the relevant part - it just really spoke to me and helped me re realise that dealing with this disease is so much more than meds/ PT/ ops/ HBOT/wheelchairs/ carers/. In many ways this disease is about learning to live with it, not as the doctors say, but as in learning to live with everything the RSD means, every treatment and physio regime you need, and yet, remaining a person, and not 3 letters. It also reminded me that we only have so much fight within ourselves..... only so much energy, so many battles we can rise too... so surely it's better to use these for things that we need, rather than using them against ourselves because of frustration, and desperation for things to get back to normal.

So my plan for this week --> get out of this stupid feeling sorry for myself hole I got myself into and instead try and move on to a place where I can simply be....... content with who I am - and accepting of what the RSD is. But never giving in - just accepting that this is my life at the moment and this is how it is - I hope in the future I will improve (and, in fact that all of us improve).... but at the moment I am going to put my energy in to being me and moving on - with the RSD, instead of fighting the RSD.

Just wanted to share this with you.

Love

Rxxxxxxxxxxxxxxxx

That friend summed it up quite well I think- I'm glad they wrote the right words for you.
Thank you for sharing it.

Thanks Frogga - I needed that at this moment

Dear Rosie -

That was wonderful. Along those lines, may I suggest Full Catastrophe Living by Jon Kabat-Zinn? He's the guy who went back to school with a Ph.D. in Chem.E to get another one in Clinical Psychology, from which point he set up the Mindfulness Based Street Reduction Program in the late Seventies at the University of Massachusetts. Here's a link to the book an Amazon: http://www.amazon.com/Full-Catastrop...e=UTF8&s=books

He's written a bunch of other things, but this is his most widely known work. The MBSR program has trained in excess of 6,000 teachers who are no scattered all over the world. It was in fact through the referral of a pain psychologist 5 years ago that I got to one, and have never looked backed. In the words of your friend, not to get all Buddhist on you . . . but, okay to get all Buddhist on you, I am reminded over the words of Ram Das, fka Richard Alpert, PhD., a one-time professor at Harvard and then on the run LSD figure with Timothy Leary, years later after a stroke at left him in a wheelchair, totally dependant on the care of others, he said that each arising is a new life, you aren't what you were then, but "you take the curriculum."

Also check out a little book and CD that my teacher, Shinzen Young, has got out there, entitled BREAK THROUGH PAIN: A Step-by-Step Mindfulness Meditation Program for Transforming Chronic and Acute Pain (2005). Here's a link to the book in the Sounds True catalogue: http://store.soundstrue.com/bk00849d.html I know that Shinzen actively believes that equanimity with chronic pain is on of the most direct paths to enlightenment going.

It's funny, I've been giving some thought to seeing if between here and the CP forum we might have enough of a critical mass for a chronic pain sangha (community). I would be curious as to your thoughts on the matter. (No rush.)

And oh, by the way, Happy Valentine's Day!

love,
Mike

p.s. Here's Shinzen's website, in case you're curious: http://shinzen.org/

Yes it was nice.
In simple terms is it saying that RSD builds character? If it is? I don't agree.

It a shame that we look for little sayings like this and the rest of the world gets to play baseball with their kids. What choice do we have? When my C.R.P.S. gets going real bad, I try to think of all the starving kids in Africa. Would I trade this pain now for starvation? Sometimes... Yes I would. But I have never starved before. I'm just trying to image someone in worse shape then me. Is the glass half empty or half full?

Before I was diagnosed, I thought of taking the chainsaw and taking off my foot with it. Before I was diagnosed, I thought of killing myself.
After I was diagnosed, I thought of taking the chainsaw and taking off my foot with it. After I was diagnosed, I thought of killing myself.

Nice little sayings... This is what they really do: They keep us occupied in between our moments of asking "why me?" Occupied in the time spent wishing I could do something more then sitting here suffering. They keep us just waiting until the next little saying. What else are we supposed to do?
It's not like we all have a bunch of choices do we?

Ok, so I'm being a downer right now. But honestly, this syndrome sucks big time. My whole life is wrapped around this syndrome. A little saying is nice but, I don't feel all warm and cozy right now. It's 1:50 am and I've slept 1 hour so far since 9pm. I will be lucky if I get 3 hours sleep tonight, just like last night and the night before. Nice little saying here, a little writing there, and yea team go. Sorry all

So, Um, Frogga....can she like, be our DAILY mantra lady? Cuz she has some pretty cool wisdome goin' on there!

Dear Dennist

I am sorry that you are having a bad time at the moment.

I didn't think that this email I shared with all of you was "little sayings". This disease is a b**** - it has destroyed my life - I have lost so much to it, my freedom, my dignity and almost everything I loved. I used to be so many things, now I am a cranky person in a wheelchair, who watches her friends do what I used to do and get so frustrated and angry.

Some of us on this board believe that life has to continue, that we have to learn to get on with this pain in order to have any form of a life. I have had 3 hours sleep in the last week and I am still fighting to keep going, to go to lectures, to complete my work on time. I am in so much pain I can't eat, I can't sleep, I can't think straight - but this disease is something I have to be WITH and accept is part of me. The only way I survive it is being like a marathon runner and just taking one moment at a time, or one step at a time.

I know I have this disease, I also know that my doctors don't think I will ever recover. However, whatever this disease does to me I am GOING to try and accept it and move on. Have you never found it takes more energy and creates more pain to fight the RSD mentally? to go "of course I can do that, I used to?" and to suffer with the "but I used to". THis is something I have really had to learn to deal with - I'm 21, have had RSD since I was 16 and am disabled to the point of needing 24 hour live in carers. It's not a cure. But it does reduce the mental suffering associated with this to a degree.

I thought you might like to know more about the lady who wrote this. Her daughter has extremely severe RSD - she is totally unable to move anything apart from her eyes. Her mother has seen her go from a happy, normal girl to one that is unable to do anything, bed bound from pain and other RSD stuff. This girl has more courage than anyone I have ever met, as have her family. They still try to act as normal, and as time has gone on they have learnt to "be" with the RSD, to accept the pain for what it is and living a moment to moment existence. By living in today and not anticipating the pain her daughter and her family have they cope with every day as it comes.

I am sorry that you don't agree with me - you have a perfect right to, but I really didn't feel that that email was cutesy, or a set of little sayings....On this board we ALL (pretty much) have severe chronic pain, or know someone that does, we ALL have some degree of disability and in the end, we have a choice - whether to live life or to just exist.

I really hope you feel better soon - and sorry if this isn't very sensical - I have had almost no sleep for ages and it is getting to me

FRxxxxxx

Hey frogga,

Well, of course your friend's email wasn't "little sayings" and I'm sure no one else read it like that at all!

Shame on you, Dennist! But if you are looking for what you might call "real inspiration" you need look no farther than Frogga and how she is tackling her life. Read some back posts, maybe you'll see a different side to things, and I hope you gain some encouragement from the stories of the many very brave and resourceful people who contribute to this forum and are so valuable to us all.

And, having said that, sounds like you both - and yes, I know, most all of us - need to try to get a bit more sleep.....I shall take my own advice, it's past 2a.m. here...... zzzzzzzzz
all the best!