So I haven’t actually written much since I started my blog many moons ago due to the stresses of life and the joy of dealing with chronic pain and fatigue.
I sit staring at the screen wondering how I can tell people what living with chronic pain is like but it’s impossible to explain to anyone who hasn’t gone through it themselves. I know certain people in my life including some family members think that I enjoy sitting at home watching day time TV with my feet up using the excuse of pain as to why I don’t work, although I am allowed some dispensation as I also care for my son!
In fact it has been banded about that I like to sit on my arse drinking Cognac, smoking on a fat Cuban, watching the delights of day time TV, whilst they flog their guts out at work paying for me to do just that! I personally don’t see what’s wrong with that myself, I just wish it was true and that I had the sort of money to afford to do it but fair play to the people that do and can! They just don’t get it but then they wouldn’t because, and this is my mantra, they don’t get it unless they have lived it, and as they haven’t then they won’t understand. I actually had my brother-in-law tell me one day, over a few to many cocktails, how much he wishes he had my life. I nearly fell on the floor but instead burst into tears and told him, if he really knew what my life was like he wouldn’t be wishing he could live it and that it was me wishing I had the life he and my brother does, with no money worries, a fantastic job that takes him all over the world, no ill health or a ill child to support and look after and no real support to help me!!! He just couldn’t see it, even after I pointed out about my pain my illness causes, the depression, the overwhelming anxiety and fear coping as a single mum and with a child with special needs and twins at that, but he insisted he would and that was nothing compared to his stressful life!
I think my last words to him, as I stumbled to the toilet trying not to cry with sheer frustration, were “If only you could live a week in my shoes then we’ll see if you’d still want to be me!” The subject was rapidly changed when I reappeared and funnily the Cognac came out, but you get my point about people not understanding what it’s like to life with chronic pain and a child with Special Needs, they think we have it easy compared to someone who is working!
I did have a good snigger recently though, as he and my brother had my boys stay for several days, they normally only have his brother, and boy did they struggled dealing with 2 grumpy teenage boys, getting them up early in the mornings, special diets, meltdowns and a child that is totally random and struggles with everyday life they so take for granted! Welcome to a world of Autism and Special Needs boys, still want to be me? Hahahaha
Lets just say I think they finally realised it’s not so easy when it comes to a child that has different needs, that maybe I wasn’t exaggerating about my son’s needs and isn’t as easy to deal with, as it probably is when they have his “normal” brother to stay!
I always live in hope though, I suppose that’s what keeps me slightly sane!
Ta ta for now x