Last night I tried my first ever attempt at cooking gammon in Coke and I can tell you from today’s lunch that it definitely does work, as peculiar as it sounds, we glazed ours with a sweet hot chilli sauce from a local supplier.
It was because I had one of my closest friends and his bride to be over, as I have referred to him in my blogs before as my brother from a Scottish mother. They are the couple who when researching wedding venues were checking out the disabled facilities to make sure I would be able to be as comfortable as possible for the day. As you can tell we really are that close and I do not have to pretend when I am around them as about the amount of pain I am in, it is useless anyway as he knows me well enough to know how much truth I am telling. Why am I telling you this, well it sets the scene for why I used the title pain blackouts.
Christmas is always a busy time of year for everyone, for Spoonies like me it is like the best thing ever as well as my own personal Kryptonite. I am a big kid, I like to have fun and laugh and joke and spend time with our famiends all of which drains me of spoons. It happens and there is no control over it, there is no way I am not going to see people and celebrate Christmas – I have already trimmed back so much that to do any less means I may as well stop if we cut back anymore.
Unfortunately my body has it’s own way of telling me enough is enough and it causes what I can only describe as pain blackouts. These aren’t blackouts in the sense of them being uncontrolled blacking out wherever, whenever but more like my body going ok, you’re in a safe environment I am shutting you down now. I struggle to sleep and have no decent sleeping pattern so have survived on 3-5 hours sleep a day for over a decade now, and if you take my partying before my accident you could say nearly 2 decades so that isn’t the issue. It is hard for me to describe as you can probably tell by my waffling and babbling but it is like when your phone or ipod freezes and sometimes all you can do is leave it alone for the battery to run out, take the battery out, ctrl alt del and shut down etc. My body gets to a point where it says enough pain is enough you need to reboot – it is kind enough usually to not do it when I am out or at what it considers an awkward or unsafe time but more usually than not when it feels safe and relaxed. I know this sounds crazy and I wonder if any of you other spoonies who read my blogs experience something similar?
Back to today, my bro came over we exchanged gifts had a chat and catch up, took some photos and sorted out timings for lunch. He then took over the lunch (knowing without me saying so that I was struggling) and with the help of my wife and his partner dinner was cooked. I was struggling sitting at the table so excused myself early and retired to my cushion kingdom get snug and relaxed. Next thing I know it is gone 4.15pm and A and L are saying their goodbyes, I was gutted and felt so rude that I basically gone into shut down this afternoon. I know my body needed it and although I gain no spoons doing it (well apart from the huge wooden one that they had bought me as a Christmas gift that I think will be mounted in the man cave) but it just happens. I text A to apologise and his reply was lovely, it is just what I would have said were the roles reversed but still reading it was a relief, and is why he is family to me. He understands my needs, my fluctuating pain, my mood swings, my shut downs and he accepts me as me – something I need to get better at – why is that, I mean I accept others all the time what hey are like, who they are, whatever their needs etc I accept them as fellow humans yet I struggle to accept the one person I am always with me – I digress again…………
Once we have finished our goodbyes my wife and I decide look at our photo’s so far from Christmas and my hands don’t want to work so she takes control of the mousepad and my little shut down continues only mini missing the odd photos but again my hands not working was like my body saying shut down. I snuggled with my LG and we started watching something on the TV I couldn’t tell you what it was, only that I promptly shut down again, as she fell asleep lying on me and my wife then I assume sat back with her feet up and took control of the remote (I say this in jest as she would have used this mini break to do all the things she cannot do when she is juggling caring for me and a 3 year old who is in to everything. The kitchen was cleaned from lunch, the bathroom looked cleaner when I brushed my teeth tonight and a washload appeared to have been done. Next thing I know is it is 7pm and my medication alarm is going off, except it isn’t 7 it is 8 and I have been sleeping through it whilst my wife hit snooze for the last hour – now I never sleep through the alarm, well unless I am in shutdown mode. I wake to find my wife and LG playing on the floor with a jigsaw puzzle.
Not long after our son and his GF arrive home and we have a bit of a catch up and then put our LG to bed. It is time for Blindspot our latest evenings entertainment but instead of sitting down and relaxing with me, my wife Irons – the housework is never finished for her and if I could have just one thing for 2016 it would be for me to be able to do a little more or for Adult services to be able to secure some funding for me for us to pay for someone to help me do the housework so we can get back to cuddling up in the evening and so she is not so tired all the time and actually has some rest herself. I know the chronic pain isn’t going to leave, my body will continue to do as it pleases to some extent and these pain blackouts will come when my body is telling me enough is enough is enough, I am doing all that my specialists have asked of me and forking out on as many aids as we can afford so apart from a little more sleep and structure to 2016 I want more than anything else to be able to take some of the pressure off of my famiends.