A good friend who I met through the Norfolk Against Chronic Pain support group posted this earlier
It is all so true, and so, so painful. I love to go out and about and have fun, unfortunately my body doesn’t always let me, and when it does it plays havoc for days on end afterwards. You eventually get really, really good at hiding what is going on inside to the outside world. Many people look and judge, some of those judge correctly others think well you can’t really be that bad you are having a meal out, or you are doing this or that, 99.9% of the time that person will never see the preparation, planning and downright fecking agony you go through afterwards.
Social isolation is just one of the many downsides of chronic pain and living with disability, I truly believe though that education and understanding of pain and people is key to changing the way people perceive you. I have lost many friends and family members (yeah you really cannot choose them) in the years following my car accident, some through choice, some sadly through their misunderstanding of what pain is like, some because the sport or activity that made us friends is now no longer possible, and others because I can no longer work and see them and some I just am not that close to anymore. What I have also come to terms with this last two years is that friends come and go naturally in life regardless of pain. More importantly though is in the same period of the losses old friends have really stepped up to the plate and been there for me, some friends have surprised me and encouraged me beyond my own thanks and comprehension and more so than they will ever realise, others have come into my life because pain and disability links us and they inspire me to do more and give me great life hacks. I cannot change people’s perception of me, I cannot change my pain, I can influence it, I can influence the world I live in and I can make it better for me and others. I cannot do this alone and I am happy that those who support me do so out of love and understanding. They put up with me cancelling, they put up with my moods and they are happy that nights out as they once were are afternoon tea in between meds, or even a chat on social media or game of scrabble.
Life is never easy, circumstances make it worse, how you react to them determine who you are. It took me 12 years to admit I needed help and support, that I was slowly killing myself physically and mentally after my car accident, this was not my moment of weakness, nor was it me giving in, it was me realising I could not change the past, however I could influence the future. There will always be good days and bad days, flare ups and set backs but between them I will have fun and laughter whether at home or out in my wheelchair. I have realised I love photography and the photo 101 course has been giving me some really good tips. I have found a new interest and a wonderful group of people who have been giving me helpful hints. I also had a remarkable conversation with Camila whose blog is a mixture of things, this stranger made me realise life is all about perceptions. I had for a long time felt that my wheelchair and mobility scooter was holding me back in life, some photos I took of our local Abbey from my POV and the conversation we have made me look at it differently. She said she often crouches or lays to get the POV I naturally have, this was a complete stranger making me see something new about my own disability and how it was a positive thing. This conversation last week gave me a massive personal boost and inspired me more than she will probably realise, and this is someone who doesn’t know me and will never meet me in person (well very unlikely), however her kind words have stuck with me. We should all look for the positive in others and not run one another down. Life would be a better place if we did this. Do not be a drain be a radiator