Living with chronic pain can be a very dark and perilous journey. You can meet several people along the way, some come and go into your life, some come and make an impression, others come and you are thankful to see the back of them. Some though, if you are really lucky become your family. they try to understand as best they can as to what your life is like and if you are really lucky they remain and help you to enjoy days even through the pain.
Today we had a get together at our bungalow with two other couples and their children. My wife was best friends when she went to school with A & N the wives in the couples and since we have been together we have all become more like family and friends, our children play excellently together and there is always a lot of laughter coming from them when we are together. Along with my actual family and one other couple they are people that I know I do not have to pretend or gloss over the pain with, who I do not feel a nuisance to when asking for help and who I know do not judge me if I fall asleep or slink off for some “me time” to get a few more spoons.
As our friends arrived they helped my wife to put up the gazebo, get all the chairs sorted and make the garden ready for use, whilst I was in the hot tub with some of the children. We had a lovely afternoon where time passed so quickly, even with the pain. D cooked the BBQ and A kept him supplied with drink and conversation whilst my wife, N & A buttered rolls and prepared all the other bits. Whilst you guessed it I was in the hot tub or relaxing in a chair.
We enjoyed eating together and shortly afterwards a mass water fight was declared. Here I was at the distinct disadvantage of not being able to run or move but I was determined to join in for a short while. So propped up against our LG wooden climbing frame I begun pumping my super soaker. (I have today discovered this is another thing that is incredibly painful and difficult to do) combined with the cold water I quickly returned to the warmth of the tub and began merrily squirting people from there. The screams and laughter was more fun than I have had in months.
Shortly after I laid down for further rest and a spot of dessert. Before we knew it midday had become 8pm. Whilst I sat in my comfy chair with feet up our friends all helped to tidy the garden, take the gazebo down, bringing all the dirty dishes etc in, and generally taking the pressure of my wife who on days like today has to work so hard.
I can’t thank everyone enough for today, my back hurts from laughing so much, I’ve been heavily supported throughout the day and allowed to drift into my own little worlds as my meds do, I’ve been able pace myself and do my fair share of short walks, soaks, lying down and sitting down and tomorrow have a day of absolute nothing planned. I am shattered, I am in an incredible amount of pain and discomfort and my tablet count for the day so far has hit 30, and that’s before the 8 at bedtime. I would however not change today at all, if it wasn’t for these fun days at home being able to join in a bit, having fun and plenty of people around to help, living with disability and chronic pain would be unbearable.
I would encourage anybody reading this who isn’t a chronic pain sufferer, but knows someone who is to please just take a few minutes out of your day to pop round for a cuppa and a chat, don’t judge them on the mess, or still being in PJ’s at 4pm or even having to make your own drink judge them on the person you once knew/know. That happy go lucky person, the life and soul of the party, or even the person who used to pop to you. We do really struggle to have normal fun, and days out without having to organise to the minutest detail to ensure wheelchair or scooter access, places to rest and have breaks amongst other things, and we do cancel last minute because of pain, but most of all we just want to be included. We know we can be difficult, we know we can be grumpy, and I know I am a bit of a recluse and hideaway and I know how difficult we can be to talk too but if you look beyond our pain and disability we really are just like you.