If you are reading this you probably are, know or work with a spoonie. This is a universal name that covers a wide variety of people who suffer chronic pain, some like me as a result of an accident, others with illnesses such as Lupus or Fibromyalgia, others the effects of MS or other similar progressive diseases, many of us do not even have a diagnoses to what causes our pain. For most of us we know it is never going to disappear, well never is a long time – so I would best rephrase that and say unless there is some significant medical breakthrough our pain is not going to disappear.If the spoonies who read my blog were anything like me they probably before getting on here felt that they were alone and isolated. That I know sounds a strange thing for a married man to say, and I do not mean it undermine the support I get from my wife who along with my parents are my primary carers. What I mean is that I felt alone and isolated in my pain, waking up several times during the night because of and in pain, and then every waking moment and the simplest of tasks like boiling a kettle, brushing teeth and dressing all increased the pain, used up spoons and slowly chipped away at the former me, I lied about the pain, I lied about how bad it was, how frequent it was and how it was getting worse and I did this because I didn’t want to hurt her, I didn’t want to not be that man who danced at our wedding, I didn’t not want to play with my son and duaghter and nieces, nephews and cousins growing up, I didn’t want her to worry about me when she was at work, I didn’t want her to leave me and I didn’t want to impose on those closest to me.
The last 18 months has been one hell of a journey, retiring from work having finally after 14years found a job I loved as much as my time in the Gym and being a children’s entertainer. My wife has worked harder than ever to keep a roof over our heads as well as me washed and dressed (no mean feet when she is half my weight), my folks and son have kept cooking to keep food in our stomachs. I also was lucky enough to have some fantastic support from my Pain Management Clinic and access to a 10 week programme where I made some great friends, that programme extended out to meeting the Norwich Against Chronic Pain support group, and my sessions with all the staff and especially Dr P and D hellise it was the first tentative steps towards moving on and accepting the new and improved me.
I say improved because that is how I feel. I had become miserable, grumpy, withdrawn and unhappy, I started trying to push family and friends away and it was all some sort of misplaced concept of doing the right thing! When I started to confront my issues (they were mine after all) head on, I started opening up in waves of emotions that I had compressed for 12 years. The guilt I felt at days cancelled, plans changed and celebrations postponed because of my pain, people rearranging their plans (including holidays and weddings) so that I was included and as relatively pain free as possible meant that I got things off my chest to neutral people who listened and understood and shared that same guilt. I realised to coin Mulder and Scully that I was not alone. I have made some really good friends from the support group, I have braved going out in my wheelchair (which in turn means going out) as I had become withdrawn in my own town hiding from people as I didn’t want them to see me, to fronting a campaign in the local press for accessibility in Wymondham to be addressed. I really have changed as a person. I am happier, I am not embarrassed by my pain (most of the time), I am confident going out (most of the time and not on my own), I know I have excellent famiends around me who see me regularly, or touch base via the many platforms we can nowadays and I am more at peace with my situation.
Now don’t for one second think I mastered dealing with my chronic pain, I haven’t and each time I discover something new that I could do but now cannot do the bereavement and acceptance process starts again, usually with a wobble and some self loathing and pity followed by some mindfulness, speaking to my famiends, being honest with my wife, some sulking, some bad days where I am grumpy and where the old thoughts of guilt and anguish surface again. The nature of chronic pain and in particular the progressive nature of my pain means I know this will keep happening and it will be a pause and repeat process.
What helps this process is being able to get on here on a sleepless day/night to tap away on the keys and to share how I am feeling with the online spoonie community. Back in February I thought I was alone fighting my pain, my inner demons relating to the pain were convincing me that shutting down and pushing people away was better for everyone else in the long run so they didn’t have to stay with me. I was then on a course of 10 people that meant there was 9 other people, Dan the Man introduced me to NACP expanding that support network to 28 people. The encouragement of Dr P and Dr B to explore an outlet for my emotional well being and the need for me to keep it up and not chuck in the towel at the first sign of a wobble meant I turned my hand at blogging. I wasn’t sure how it would pan out whether it would be a load of crap or whether I was going to be able to express myself. To my amazement I discovered (and although I am happy to have found you; I am sad that it is because we share this horrible pain in common) that the support network blogging is mahoosive and there is nearly always someone in the world online reading/writing my words or posting their own and offering support. Without the fear of trolling which has been virtually non existent.
As I start my battle against the Town Council for discriminating against me due to my disability I am sure that you will continue to offer your support and advice and give me the extra strength I will need to follow through and fight on