Building Support Networks – Fellow Pain Sufferers

As I have said before, I have a fantastic support network from my family and friends. My loving wife is a strong woman whom I am very proud of, and honoured to have married. She reads all my medical literature as she retains the information better than me, looks out for signs of the side effects (I find if I read these I get phantom effects) of my meds, and helps me as my primary carer. Without further help and support from our parents, siblings and closest friends life would certainly be much harder.

Despite all this support I was finding that my moods and frustrations especially in periods of set backs like I am currently in were unaffected by the love and support I already get. There wasn’t so much a void in my life amongst my family and friends, that’s not what I’m describing more like I needed extra support in these periods. Thankfully as a result of attending the 10 week PM programme I have extended my support of specialists, faced up to some very hard decisions and been introduced to a local support group set up by past participants of the 10 week PM programme. This is unique in as much as you are all already armed with a number of the skills needed to manage your own Pain Jigsaw. Therefore by working together you can enhance your knowledge and in theory manage your pain and therefore your life better.

The group is entirely self funding and meets once a month to talk about a particular topic. It could be Mindfulness, it could be how do we fill our sleepless nights anything really. It has become such an important network in a relatively short amount of time. Most importantly of all is that we meet to share positive experiences and not just to moan and groan. We give each other support and a fresh way of looking at things that have become issues, we offer hope to each other and share new ways of trying things. We give tips to each other (I’ve got some great ones on how to use my slow cooker). We talk about meds and procedures that we’ve tried and how effective we found them, we talk about professionals, we share contacts and advice on helping to complete forms, and anything else we find helpful. We come from all walks of life, all ages ranging from early 20’s to I wouldn’t like to guess for a fear of getting it wrong. We are parents and grandparents, husbands and wives, and whilst it is true that we have all been brought together as a result of suffering from chronic pain and having a variety of medical conditions, illnesses and injuries we all offer something unique to the group. Not only have I made new friends I have also been given a fresh lease of life being able to put together some of the skills previously developed at work into the organisational side of the group and sharing our meeting notes (it’s a small thing but it gives me a purpose and that in turn lifts your mood). We have members who just read our posts as this helps them, those that share, and this works fine for us. Just being able to help in any sort of way is what is most important to the group as a whole

New members are welcome from each intake of people attending the 10 Week Pain Management Seminars and it is purely up to you as an individual how involved you become. We have our own private blog and facebook page where we write some of our innermost thoughts and feelings and where we sometimes like to have a bit of a moan, or talk about something silly such as the many trips and falls we all seem to have. By having this network of people we can freely rant without being judged, but most importantly knowing that the people reading it understand how frustrating life can be at times. There is not the need to think you must offer advice or hope of a new op or one drug cure all during these rants as so many non pain sufferers feel obliged to do. More an understanding of one another and the suffering you can experience. The group basically allows anything to go, we lift our spirits and we offer that little boost when it is needed.

As we develop and expand as a group we aim to build networks with more professionals who can come and speak to us. To develop our shared interests in to book clubs, garden clubs. film club and any other interests that we share in common. We understand how gardening or going to the cinema can affect pain so can help each other, or meet at more comfortable venues. We meet for social events outside of the formal meetings be it for coffee (and quite often cake) at someones house or at a cafe and I hope as we get more members these social events expand. Starting with some playdates over the summer holidays at local parks. I would like to think that as we develop as a shared entity and support network that we could be used as an example of positive action and visit other pain management services nationwide and encourage others to start up something similar if they haven’t done so already. This like so many goals are a long way off but if you don’t have long term as well as short term goals you never know where you are heading. Now this may be a bit of a pipe dream and certainly in my current condition so out of touch that it is totally unrealistic to even try this at the moment. This doesn’t however mean that without the support of other family members it can’t become a reality, more just that attending our own meeting is one of my realistic short term goals!

If any of my Pain Management support group are reading this, I hope you feel I have done the group and it’s importance justice and if you think I have missed anything out please do comment.

Finally it is very important at this point that I thank the person responsible for setting up the support group. Dan the man, he is a quiet unassuming chap who books our meetings, helps give them direction and who often sits back and listens instead of offloading his own issues. I have found I have so much in common with Dan, both on our journeys in life and how they’ve changed. Dan if you are reading this thank you, at a time when I needed support more than I realised you walked into our PMP group and helped to improve my life. I’ll never be able to thank you enough for bringing us all together and holding our hands when the 10 week intense course finished.

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