I’ve thought about blogging this several times and every time I have stopped myself as I hate to be negative, or moaning, and the last thing I want is pity but some days I just want to scream and shout ‘I fu@king hate my pain’
We live in a world of social media and everything is played out on it like we live in some sort of eternal soap. I don’t watch the soaps as they are all negative anyway. I understand the irony of this comment as this is about to go on social media so I guess I am leaving myself open for a load of trolling but c’est la vie.
I hate seeing comments like woe is me I’m single, or my days ruined it’s raining, or even worse the people who say to me you are so lucky being at home in this weather. Lucky is scooping the jackpot on the lottery, lucky would have been to drive an alternative way home that night in 2002 when some @rsehole changed my life so I am now unrecognisable to the person I once was. Lucky is not living in constant pain, and when I say constant pain I mean real chronic constant pain not the people who say to me oh I know how you feel I spent Saturday in the Garden and at the end of the day I was stiff so had a warm bath.
From the minute I get up everything I do causes pain and aggravates my condition. My nerve endings are so on fire that even the touch of clothing is like a thousand needles prickling me all over. I have a rail to use to get me out of bed and it’s a short stroll using my walking sticks to the bathroom each step feeling like I’m walking on daggers. I use my toilet frame to be able to go to the toilet even a piss, yes standing is impossible, my legs would go numb my body would spasm and I’d be pissing all over the bathroom! The shower takes forever sitting on a stool and olnly being able to reach certain areas on my body, and needing help to wash some of the most intimate areas (degrading at any age but at 37 makes me feel so useless). Getting dressed has to be done sitting down, again with help. I love the summer as flip flops mean my wife doesn’t have to put socks on each day. Then its morning meds just the 10 a mixture of opiates, pregabalin, diazepam, paracetemol and an anti inflammatory.
The day drags on and on and on, each hour made up of sitting in a number of different positions, laying, walking, doing some stretches and generally doing anything to try and limit the pain that is coursing through every fibre. A cough is like a hammer to my spine, a sneeze like shotgun, even a yawn hurts. Sitting and pooing takes an age, trying to use my sphincter muscles feels like a boa constrictor squeezing my spine and making my arms and legs go numb.
I long for even the postman or woman to knock on my door (they know to wait a little while as it takes time to get to the door) so I have someone even briefly to talk to. My meds make it impossible for me to drive with the new laws that came in to effect in June, I’m not capable of looking after my daughter as I can fall asleep at any point so she goes to my parents and I sit home alone. If I’m lucky a friend or family member will pop over (but most are working themselves so can’t very often) to see me or to put together my scooter or wheelchair and take the “cripple” out for a walk and some fresh air. Where we have to plan where to go because so many places remain inaccessible to disabled people. Any trip out entails more medication and results in increased pain having a fun day trip relieves the boredom but by the end of it I am so spaced out and had so many tablets that I don’t know my own name let alone what day of the week it is, thank goodness for digital cameras and photos to be able to look back at the day out.
I constantly spill my drinks as holding them is agony, and typing this takes days to keep going back and typing a few more words each day. I constantly forget what I’m meant to do each day, we’ve nearly run out of insurance on both the house and car as I forget to call and pay or arrange.
I rely on others cooking my tea and have to eat as quickly as possible as sitting on a dining chair is yet another every day task that kills. Others load my washing machine, dishwasher and generally care for me or unpaid. It’s no wonder I feel like a burden to sooo many people.
My specialists have all told me to give up working (I am a mentor for 16-19 year olds and I love it), however I have now missed more days off work than I have worked in the last 13 years, and whilst my work are being supportive I think the reality is this latest deterioration has resulted in this becoming impossible. I don’t however want to be branded as a good for nothing scrounger as disabled people are all too often portrayed in the press and who time and time have money cut. Ideally if I was unable to work I would volunteer locally to help people when I can maybe being a phone befriender for age uk calling people a couple of times a week that I can do from home and not let people down.
Evening comes and it is lovely to have my wife and two kids at home, even though playing with them is painful and difficult seeing their faces, hearing their laughter and screams and having bedtime cuddles (gently of course as it hurts) gives me a bright few hours then. Then if we are lucky my wife and I watch a film from different sofas as it hurts cuddling up as we once did, and that I loved. I hope she knows I love her and despite the lack of physical contact I love her more every day. Bedtime and it’s the painful toothbrushing as I cannot stand at the sink with the slight bend everyone else takes for granted. Laying in bed is painful, I move and fidget and keep my wife awake unfairly as she works 60 hours+ each week just to keep the roof over my head. Eventually as sleep evades me I take my last lot of meds taking the daily total to over 30 tablets and I move back to the lounge to repeat my sit, shuffle, move, lay and go mad at the cr@p on TV. I long to try and control my pain again, I didn’t ask for it, I didn’t ask for some arse to cause a RTA and I certainly didn’t ask to suffer for the rest of my life. I am fed up of long periods of my pain controlling me and putting on the fake smile and yes I’m not too bad that most people hear because let’s be honest who really wants to know how painful pooing is!
The next time I am told how lucky I am to be at home I want to scream all this at them, but the reality is the reply will be, actually I miss not working, and not being able to look after my child on my own. I long to just get the pain under control so I am controlling my life again, and can control the pain as opposed to pain controlling me so that at the very least some of my tablets can be reduced and I can ride my mobility scooter taking my girl to school safely in the future and without the funny stares.
Of course this is a reflection of my worse days, when those darkest feelings are all absorbing and consuming. The pain never goes but I do have days where I feel a little happier in myself and a bit more positive but on these days don’t be fooled into thinking the pain has gone. I have finally accepted that this will never happen, now begins the long journey into sorting out life, my emotions, accepting help from others, not being embarrassed by my various mobility aids and to make the most of the precious time I have with family and friends.
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