It is now the midway point of week one of my wife’s holiday. She works in a very high stress environment so with caring for me and our LG she really does live for her holidays and down time. Not that they are ever complete holidays as they never seem to pass without her being contacted about work and one of her caseload. This is the sacrifice that is made for the job of being a social worker, and despite what you see on the television or read in the press 99.9% of the profession are caring individuals who are always trying to balance the needs of the child with the support of the family. Something that is becoming harder and harder with budget cuts being imposed on vital services. It is no surprise then that during her holidays (even if we cannot afford to go away) we seem to be busy everyday. Either out with friends and family or at home with them visiting us. I understand the need and importance to help her mental wellbeing by having fun things to unwind and reduce stress to enjoy life and put out of her head the horrible things she has to deal with and I support her 200%. The only trouble is that as each day passes my sleep decreases as my pain increases.
My spoon count is now in the minus figures at the start of each day and my temper is through the roof. It is so hard to explain to who doesn’t have the pain just how tiring and debilitating it is. Any step I take is so painful it is like having someone stab a knife through my butt cheek up my back and into my neck. I spent yesterday predominately on my scooter but even this uses spoons like there is a national shortage. Each day you take more and more painkillers just to see you through the day and in turn you become more and more frustrated. There are of course things you can try to do to limit the pain but when trying to lead a normal life these are not very practical. I try and pace days out with days at home inbetween to make the most of all my mobility aids thus making the days a little easier, but the reality is these short respites do not help. I need a prolonged period of doing nothing if I am to recover from simple things like lunches out, family at home or days out using my scooter, the trouble is to get that I ruin plans that my wife has made with our friends and family or I sit at home wallowing (either in the hot tub or bed) missing out on the plans that have been made. It is a lose, lose situation and when my pain is through the roof and everything is making me angry there is nothing that I can put in place from the pain management jigsaw to help. Mindfulness is not working as I am in so much pain and am so stressed and angry that any attempt to try and clear my mind isn’t working, there are 101 things running through it and every one frustrates me further. I get to have some R & R in the hot tub or at home but that means ignoring visitors. It is times like this that I really hate my pain and disability, and the impact it has on daily life. It sucks the enjoyment out of so many things that what should be fun and the reality is that family times turn into anything but!