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