Post 249: I wish for this nightmare to end.
“I give my Darling a kiss and cuddle and jump out of our matrimonial bed, head downstairs in bounds and feed the cat all the while considering what to do with myself today.”
Oh no I don’t — they are things that are definitely in the past. That’s a dream of how it should be.
The stages of this pathway are mean and the cruelty never ends.
I’m trying to make the effort to get up town with my Darling for a late breakfast, more of a brunch dinner with our pals. One of which is bringing her new other half she’s been with a couple of months and is ready to introduce him to the team.
This should be a nice use of time and a meal out too.
But I’m feeling tired in my bones still. That and aching with the usual pains.
And although the back pains are another tiny bit better, the rest of me is the same; the right shoulder really aches and the calves and feet are already chubby with excess water that the heart is struggling to move around my body.
This is a poor excuse for a life.
———
Yesterday’s entertaining record binge was a world away from the daily routine that is my life now. I can’t tell you how frustrating it is when putting on your clothes is a battle and the shower is now an enemy just like the stairs.
The pains I dare not mention because they are chronic and forever — it’s not like I’m going to jump up in a biblical way and suddenly be free of pain and be able to do what I like again, whenever I want to, and not have to consider the pills, pains and uphill walks and steps in today’s trip out.
Showering is now for special occasions only due to the time and complexity of what was a daily routine occurrence. I hate the fact that I sniff my underarms just to see if I’m fresh enough to avoid the bodily wash in the bathroom corner unit that used to be my friend.
It’s now got an invalid feel about it with the chair and other aids available for my bodily cleanliness.
Oh why do I feel so much pain?
Why do I have to ask for trips out?
Why is my independence shattered?
Moan, moan, moan; that’s me, that’s what I’ve become.
When we get up town the same troublesome me has his usual troubles getting in and out of the car. Where is that blue badge I’ll probably never have — that would at least ease my trips to town, or anywhere else for that matter.
In fact later on in the afternoon when I’m officiating on my email inbox I find a county council letter with a request for me to give them the most recent clinical letters that explain my situation and why I’d need this blue badge.
I immediately wonder if there is such a thing as a letter explaining what my ailments are and also to send the DS1500/SR1 form, if I have one — which I haven’t, quite yet.
So I get the latest formal letter from the last oncology clinic, turn it into a PDF, and reply with the enclosed clinical letter hoping for the best and explaining about the hospice that deals with pain relief which I don’t get any correspondence from, but could ask for the latest dosage changes that help me move rather than being bed-bound.
It’s another step towards being assessed for the blue badge which I feel is farther and farther away.
Moan, moan, moan.
But I do stand a chance, don’t I?
———
We meet up in a cramped corner of the café and introduce ourselves to the new man in the life of our pal. Six around a four-seater table is not ideal but we are all good friends and happy to be in close proximity.
We chatter away and eat the food served to us, enjoying both.
The parking lot has had us looking at our watches the whole time due to not being in the six-hour parking and being in the supermarket’s two-hour dash-in & dash-out restrictions.
We were impressed by the extra heavy traffic today, but realise it’s the day before the day before Christmas Day.
The car parks were all full and the shops likewise. It’s the pre-Christmas dash for the goodies we all wish we hadn’t bought “just in case” because we’re not going to eat it for a week or more.
I get taken home and rest in my seat in the lounge where I stay all day and well into the evening until bedtime. The whole house is beginning to look a lot like Christmas, as the song goes, but I’m still not feeling very Christmassy.
Two of our pals come back and stay a while for tea and mince pies, and we discuss the work they’ve done on their project bungalow which is stalled due to contractors being very slow to get going. I sit in my chair, trapped and uncomfortable.
Uncomfortable because I’m listening to a guy 12 years older than me telling me how he’s running around doing amazing things with his busy life. I’m so jealous but I hope it doesn’t show.
They eventually go, but not before my Darling has shown our guests how she ices the Christmas cake with a snow-like sugar topping that definitely makes me feel like Christmas is nearing.
But it doesn’t cheer me much.
I’m still in my funk.
I’m at the liberty of anyone who becomes my carer. I hate this change in my day-to-day life. Why can’t I be more independent? Why am I aching all over and struggling to help out with any and all the preparations for Christmas Day?
It’s so annoying.
This is only going to get worse. I’m not getting better.
I can make the most of what I’ve left. I’ve still got some independence if I try hard to grab it.
I walked a bit recently. I made my own lunches this week.
Is that enough?
It’s not enough in my eyes.
I want three months of rest from the clinical team’s fingers.
I will have three months off.
This nightmare will end.
I’m not dead yet.
Good night, sleep tight.
PS
The Micky and Mini star is one step closer to be sited at the top of the tree.
