There is little to report from today (Sunday) as the day was spent pretty much in the same way as Saturday, if you read my blog ‘the unseen diary of the day after the fun before (https://seachysuffers.wordpress.com/2015/08/23/the-unseen-diary-of-the-day-after-the-fun-before/) with the added bonus of being able to spend a few hours in the hot tub with my LG whilst feeling guilty that my wife was spending that time (the last day of her holiday) painting a play house that will be going up once she finds the time to do the rest. Yes I was contributing by looking after my daughter but my wife never sits still and I forever feel guilty abooooooooout (I forever spasm and drift and you get long words like this) it. We watched a movie last night during which she Ironed. This guilt and frustration can be as painful as the chronic pain is debilitating. It is difficult to talk to the family about this because all they are doing is keeping on top of the housework (that I cannot do)
Days like these it is hard to be positive, the relaxation that I posted in the unseen diary blog isn’t what others deem as sitting and relaxing, relaxing for me is having to constantly fidget, change position, move seats, move cushions, holding going to the toilet for as long as possible because going for a short walk is good for you but painful at the same time. When sitting you have to adjust to wherever is comfortable against where the pain is striking at this particular moment of this particular day. Relaxation has a very different meaning when you have chronic pain.
Firstly my ‘cop out’ days as some have called where I put my positives as
- Got Up
- Got showered
- Got dressed
really aren’t cop out days, I cannot express how difficult it is some times to get up and see people and striking up a conversation. It takes energy and spoons
So for those of you who have asked me how I remain positive even if days are agony, days like today where my wife is back at work after 2 qwwkwt (at) home, so my LG is not in my care as I can fall asleep and not always be vigilant and my son is going out shortly means I will be stuck at home staring at the same four walls. Cabin Fever fear is already setting in and he hasn’t even left yet. Remaining positive is a constant battle. I am finding some great help in a variety of ways though and am sharing these as my positives today
- Having attended a Pain management ffi]f Course I now have access to a support group who have all beeen through the same pain management program as I attended. We have a private facebook page and blog where we share our successes can pick one another up when we are feeling down and share hints and tips as to how we can all achieve more each day. We meet once a month with a discussion topic and have started to create our own little social groups based on our shared interests
- I laugh at myself (not always easy) and sometimes at the aghast of others, especially when I cruise the seafront pretending to be Andy from Little Britain (actually got sworn at this week) but it makes me laugh more. I find pictures like this funny & grounding. Don’t let this lead you to believe that I don’t have bad days and all the associated feelings of guilt that I have. It is hard to remain positive but you must try!
- I have found this page on Pinterest there is a wealth of fun and thoughts etc that can keep you chipper https://uk.pinterest.com/marshawilburn/chronic-painsad-truths-funny-thoughts-and-hopelncl/
So you can give in or you can fight on. I am choosing to fight on, it is not always easy to fight on, and I have a wholle mix of feelings and emotions that I am constantly battling each day and seeking help with. THe hardest thing has been the pain stopping me from working and the knock on effect of this is doing all I can to sop my mind slipping further than the pregabalin, methadone and diazepam do already! I don’t have all the answers, I don’t even know all the questions as I continue to come to terms with and accept the changes and challenges ahead, but I face them head on with the support of good people around me!