I have lived with full body CRPS for 20yrs , and all the associate extreme pain and mental health issues that goes along with it.
I now tutor courses for people with chronic pain and mental health linked to it.
I have attended pain clinics numerous times, and while the people there are very knowledgeable academically speaking they don't have the life experiences , in my opinion this is why they don't hold much meaning.
My issue is that when some says I know how you feel , and clearly doesn't it becomes patronising , most of the time thats not their intention , however if you have the chronic condition it how it makes you feel. People with chronic pain will respond to someone who can show real empathy, and can general say I know how you feel and in most cases do actually know .
This is why when I volunteer people can relate to me and I to them.
So if i explain management strategies ,relaxation etc and put across how they work for me, or usually they witness me using some techniques at times when Im struggling through a 3 hour course, it is easier for them to understand . Myself and our other tutors deliver what I believe are great services, that do work if delivered correctly , by the correct people.
Hope this all makes sense to you all, Im sure most of you will be able to relate.
Be well everyone stay strong
Dave
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Davek723
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Hi there, I got put in touch with a group called EPP, I went on one of the courses they offered and found it really good, I then spoke to one of the tutors and kind of went from there.
I had to undertake 4 days training and then ended up tutoring. It's so rewarding so if you could get involved I would recommend.
It's double edged really because firstly it keep all the good techniques you can use to help yourself. Secondly it is seeing others use the courses to turn things around. Alot of the time helping others is a huge distraction from your own condition. I just find although sometimes both physically and mentally it's tough the rewards out way this.
I know work with new tutors and im working on becoming an assessor, once I do that I can become a lead trainer.
People saying 'I know how you feel' says a lot more about them than you! Those with good training would never say that. But there are a lot of people around who think they are doing the right thing but aren't. It isn't empathy that they need to give, because as you have put it so well, it is a false empathy, it is compassion.
Well done for getting through the training, and good luck with the assessors course!
You used the word compassion which is very important as well. I ended my last course talking about being inspired , and inspiration. Both from me and the inspiration I get from others who get immersed in the course and you can actually see the differences in people from week one to week six or seven. They inspiration I get from them keeps me going too.
I'd be the first to admit it doesn't work for everyone, there are many who come I can totally relate to as 10 years ago it probably wouldn't have worked for me, I guess it's whether your in a place where you have accepted nothing else you've tried is working, and you are at a stage where you are completely open to trying something different. I completely understand most situations people are in as i have been through over 20yrs of highs and lows physically mentally financially etc etc .
The best way to explain what I get from doing this is, I used to earn substantial salary , now I live getting by , I always though I was getting the best from life and thought I was happy and contented, but the joy or buzz I get from working for free totally out ways anything I felt .
Im am way less materialistic and find there are way more important things in life.
I would say everything over the last 20yrs has made me into a more grounded human being and to be honest I just think Im a better person .
Physically and mentally I have my struggles but the people I meet inspire me as much as i try to be an inspiration to them.
I read alot about people being inspirational, and think alot about it.
To be inspirational for me is someone who changes the course of someone's life, I think I've met more inspirational people being a volunteer than at any other time in life.
I find alot of people use the term loosely, and sometimes confuse it with motivation.
I look at life differently, I will be more inspired watching someone who is jogging and you can see the struggle, because they may be over weight than I will be by someone "fit" I see running a marathon. They may well motivate people more but it's the people struggling that inspire.
Thank you again for the kind words.
Dave
Very well said.Sitting across a doctor who only knows what he learned from a book irates me.We who struggle daily with chronic conditions n conditions with no cures need to rise up n help one another to feel accepted n educate each other.
I do agree that the best way to become better at self managing a chronic condition is by getting support and help from other people who are in the same place in life. As i said it is the fundamental behind our groups working.
While introducing our self as tutors you can see an immidiate change in people when you disclose you are firstly a volunteer There for not being paid, and secondly when you inform them that both yourself and co tutor both live with long term chronic pain and or associated mental health issues. They instantly relax more and become more open . In my opinion they listen more because we have a deep understanding of what most are going through.
I spoke about inspiration, it's easy for a person who wants to be a footballer to be inspired by a footballer, or a new doctor to be inspired by a top surgeon but i doubt the footballer would inspire the doctor etc. So i agree it's down to all us who live with chronic condition to inspire each other, help each other advice each other etc. So i support what you say .Sothank you again for your words.
I too have CRPS, diagnosed 2007. Had various infusions etc ..now on my 2nd SCS.. I have a nevro Senza .. had this one fitted in Leeds 2012... Be lost without it.. it doesn't get rid of all pain but certainly helps.. . I am also on various medications the main being oral ketamine... It is hard explaining to people the pain ,I try by saying it's there all the time just the severity changes .. it is a horrible thing and don't wish it on anybody . I am not awaiting an appt at the Walton centre in Liverpool... Andrea x
I was on lots of pain meds for 10yrs. I found little or no relief. My personal choice was that the meds didn't work so why take them,I was still having flair ups etc, and I appreciate what you say regards there all the time with more severe pain at times. I call this bad days , on a normal day up to worse days. Not good days bad days as docs describe, I can't honestly remember a day I coukd call a good day.
I find I can cope better mentally with no meds fuzzing my brain , and use every self management tool I can to keep going. Still in lots of pain but not giving up and always positive.
With regards Walton centre I've ask to be referred but keep getting refused.
Hi there, courses are area specific I would suggest looking on line for your area, try to look for expert patient . EPP.
AS for tools to help self management.
There are lots of things like distraction techniques, better breathing , relaxation, muscle relaxation and many more on you tube. Progressive muscle relaxation is one of my favourites.
Just be aware that not all techniques work for everyone, and they will take a bit of practice. It's important to remember your trying to sort of reprogram things that you may have been doing for years , so it's not an overnight fix, from my point it's really worth while . We do a thing called action plans where we set a task for each week, this is really good. It should be something for yourself, something nice it gives you a target so should be something you believe is achievable.
Other things to look at are positive thinking, sleep patterns, we try and break down some of these, most people focus on pain keeping them awake, this is rarely the case, it's more common to be stress fear anxiety etc. So focusing on removing these can help.
If you get stuck just message me again I will try to help.
Just take baby steps you should see some benefits.
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