The ugly truth of trying to do what’s right

I make no apologies for tonight’s blog, it isn’t pretty, but then the truth is chronic pain isn’t pretty. I will update with developments from the post I received from Wymondham Town Council today and some exciting developments with regards to my Enabling Access in Wymondham group that I have been trying to get off the ground for many months now later in the week but today needs to be about today.

21 hours ago I was still pulling my hair out, well more like scratching my bald head, but the reason was the same. The pain of the previous nights council meetings just wouldn’t subside. I gave in and took my morning meds, and hoped for a few hours kip on my reclining chair/bed. I remember fumbling around for my phone and not being able to find it about half 4, eventually turning the TV on to see the time. I couldn’t find my phone and nor could I reach far enough forward to the electric chair control to sit up as I was bursting for the loo. Shuffling a millimetre was painful and it became a battle of mind over matter as to whether I’d get back to sleep, get a shuffle on to the controls or wet myself and ruin my new chair.

I managed to finally get a bit more sleep and then I heard my phone alarm going off. It messed me about as I couldn’t find my phone and then I realised it was in the bedroom with my wife. I couldn’t understand why as I always have my phone on charge with me. She got up and showered and then came through and my lack of comfortable sleep meant as she reached over to get my cup for my morning coffee I asked for the chair remote. I got a funny look (it was after all hanging off the chair about 3 inches out of my reach), but then having spent more months than I care to remember in separate rooms to sleep she has no idea as to what sort of night I’ve had so it is hard to guess what sort of mood I’m going to be in. Mistakenly as I was up almost as soon as she’d had her shower she thought oh must have slept well he’s awake, in truth it was move or p!ss stage.

I get to the bathroom, sit down (one of the issues of my pain and nerve damage is that I cannot stand unaided and if I stand too long in one place my legs go numb and I fall over so I have to sit) and frustratingly every time I try and relax to go to the toilet my back goes into spasm and I cannot go. Sitting there in agony and ironically really p!ssed off that I cannot wee, after what seems like an age I finally go, the release of tension in my back and bladder was lovely. Suddenly it occurs to me that my wife is rushing getting ready and it’s still dark. Why? It’s a day off the builder meeting to discuss to change our bathroom into a wheelchair friendly one isn’t getting to us until sometime between 10 and 12.

She then reminds me that although it is her day off she has a work visit at 8am. Some fu@king day off. Pardon my vulgarity it is the need to express anger as it is now over 100 minutes since I started this and I’m not a fraction of the way through the day. It gets to 9am our son and his GF have left for work and college respectively and there is still no sign of my wife. Our LG has been asking for a drink for an hour and breakfast and I haven’t been able to sort either. Time to think outside the box, not easy to do with Diazepam, Methadone and Caffeine by the spoonful coursing through my veins. Sadly my inability to carry much and use two walking sticks I had to use my LG to fetch bowls, cereal, carry milk and milkshake mix and she gets her drink and we share some cornflakes.

At 25 minutes past 9 my wife still wasn’t home. Panic started to set in as  she said she would be back at around 9  I was running out of time to be able to shower and get ready in time for 10. Once again she had left her portable mobile home. Fortunately not long afterwards she arrived home. Then its a case of getting me in to the shower, the horrible step up, and in and then getting help to wash, and dry myself before making my way to the bedroom and my wife finishing drying my legs and helping me dress. My wife then returned to the bathroom to repeat this whole process with our 3 yr old LG the one person who does need the help whilst I sit and build up the strength to make it back to the lounge, not much of an existence but that is life with chronic pain and maybe missing this evening’s support meeting has added to my frustration and pain.

Finally by half 10 we are all dressed and ready for the meeting with the builder. I have no idea what time he would be arriving and have no idea what time he did actually arrive. We spoke through the needs I have with the bathroom which we are having to fund ourselves, went through the designs and came up with an alternative solution and then my wife went through the important stuff (well for her) so the sink and toilet design and tile choices etc. This conversation left me exhausted both physically and mentally.

My wife made me lunch and I do not remember her going out to buy bread but apparently she did. I tried playing with my little girl doing some colouring in and sticking in one of her magazines and just could not focus and kept hearing booyah the shout we use in our family to wake people up.We popped into town and had our photos taken for our passports, the lady taking them recognised me from the Wymondham Matters website and from our photos in the paper. To my delight she was in full support of what we were campaigning for.

My father in law called round to collect a cot bed base and mattress and I know I started a conversation but I do no not recall him leaving, the end of the conversation or the fact that it started snowing. I do remember my LG coming into the house excitedly showing me a scoop full of snow that sh had got, and our next door neighbours LG shouting high, although at the time I was in so much pain it didn’t register who she was. I should say it is now 13.30 on Thursday some 37 hours from the meeting and I still do not feel back to my level of normal around the 6-7 mark on the pain chart.

Next thing I recall is my LG getting upset that the snow she brought in for me had melted then it was 6.30 and tea time, or at least finishing tea. Apparently I had been spoken to several times in the afternoon and do not recall any of it, I realised a combination of the pain and medication was causing all this. It is exactly why I take so many photos so I have memory reminders of the day and these blogs help too.

Unable to get some decent sleep last night I was writing this until the early hours and my body finally let me  rest.

I feel incredibly guilty and selfish about how little we did as a family on Wednesday, it is a day my wife takes off and I was incapable of doing anything. Worst of all I was unable to go to my NACP support group meeting. These are incredibly important to me as the people that attend really were a large part in my life at a point when I was so low that without them and my family I hate to think what would have happened. It is underestimating their impact by simply calling them some of the saviours of my life. I have made some great friends and have people to turn to when the pain is driving me insane. They pick me up so I can get out and about and they have given me the confidence to start being out in public again. My guilt was compounded by missing this meeting and seeing the people I love to see, and the only ones I socialise with outside of my immediate family and four couples we see who we went to school with.

I feel that by putting my body and mind through the stress of the council battle is already at such an early stage having a huge detrimental impact on my life and my famiends. I know it is this stonewalling that large companies rely on people giving up having experienced it previously after my car accident. So now once again I am torn, torn between doing the hard right thing and copping out for my famiends. My heart and head tell me I must be proactive but I do not want to make myself worse. I had a wobble and fortunately my 7 partners in crime reminded me of the good work I have already uncovered and help that has been given. I am looking forward to recovering enough for the next meeting.

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