Warning Not meant to be a self indulgent or whinging article but may well seem so. Therefore if you do not like such words I suggest you move on now!
Every morning I wake up hoping to have a positive, pain free and energy filled day. I have things I planned and want/need to do. I have chores and then social needs to fulfil.
Sadly I have chronic illness. This means in my case due to several debilitating conditions from Crohns Disease, Diabetes, Fibromyalgia, Neuropathy, SVT of the heart to anxiety and depression brought on by the other illnesses and the effect upon my life, I cannot often fulfil any of my commitments to even myself let alone others.
Yes I do have good days, days where all aligns so for a while I can pretend to myself and others that I am not ill, that I am a healthy 50 odd year old blokey, but I am never ever pain free.
I cannot be somewhere and decide yep I will stay over at a B&B because I am likely not to have any meds with me (twenty odd tablets and lots of injections daily) but even if I have may not be able to vacate the room on time or at all the next day.
I may often agree to come along to an event or party but sadly am probably unlikely to get there, even if pain levels do allow such ideas , my social anxiety or lack of self worth may not.
When folk say every day is a struggle they are telling the truth. I have to argue each morning for a reason to remain here, luckily as a parent the weight of the discussion is usually stacked in favour of remaining alive, but often its close and I am not ever sure of the outcome.
Remember these illnesses caused me to end a career I loved, stripped my self esteem and took all I saw as the important side of me. I now have no self confidence and even those brief pipe dreams I do get are often quickly dissolved by either my own fears of not being good enough or the decisions of others that I am a liability to their social group.
Its not ever long for those that say they understand to drift away, sometimes it seems on an aggressive rip tide.
The reason I started this article with the warning is because so many times those on social media that disagree with my views will post that they ‘unfriended’ (a facebook word for fell out with) me because of my self indulgent wining or whinging rants. Sadly for them I do use facebook and other media to share my experiences, sometimes people in the same position will relate to my words and gain a recognition that they are not alone, other times folk with no such challenges to their lives may see that there are people who are ill and are not just pretending. You cannot see m illness, not by looking at me. I look like a middle aged chap with his own views upon expected fashion.
Yes I do ride a motorbike on good days, at I may ad my consultants orders as it is gentle exercise that does not challenge my body but encourages movement! Those who have never ridden may not realise that. But you do not pedal a motorbike nor if you ride right do you hold its weight. Even then its rare i get out.
I am made to by society as are all disabled to feel guilty for trying to live on my better days as a pose to existing often in a pain, exhaustion and depression induced purgatory upon the rest.
This is but a small snapshot of my life and that of many others. There are many others far worse off but when in that constant daily pain, when you are physically and emotionally drained, cocooned in your enclosed enforced prison that home becomes it is difficult to remember that. I/we do become self indulgent, I/we do moan, for life often is but that existence, though with luck a sprinkle or two of living does occur too.
So again sorry if my words miff you off, sorry if I offend you by not committing or letting you down, but sadly every day, yes every single day I let me down. That is my life, but I have no choice, you cannot ‘unfriend’ yourself, well not until the day comes where I finally lose the argument!
Jonesy Jones
Triker Poet
http://www.thejonesy.com
Jonesy Dog of Socialism & the Trikerpoet 