Letter from the North

Non-Union, more bad nights and selfishness, blood pressure rising – 29-Jan-2018

 

This is NOT a picture of MY “non-union” collar bone, but it gives a sense of what it looks like (the bit circled in red) 

What an awful night – Sat 27-Jan-2018 

This morning I woke around 3.00 am, and that was that. I got up at around 4.00 am and faffed in my office, but I couldn’t sleep and I really couldn’t work. More faffing until 7:30am, then I crashed back on the sofa till Teresa came down around 9:30. She was rather worried to find me still asleep and, I gather, had to check I was still breathing! How scary that must have been for her and, I gather, not the first time she’s checked to see if I’m sleeping or dead – I’ve said many times, it is harder for those that care than those with cancer and this is a perfect example of that. If I’d been dead, I wouldn’t be worrying about it, but she would, it’s a horrible thought and I can guarantee she will cry when she edits this section! 

After all that, it took me a long time to get going. I thought about trying to work, but realised I needed a down day and so I had a totally not-work day and actually quite enjoyed having a day off. 

I suspect my body was just reacting to our long and busy Friday (no matter, we really enjoyed ourselves). 

I crashed again around 7:30pm and … 

A great night’s sleep – Sunday 28-Jan-2018 

I woke Sunday morning just before my pills alarm went off and although I still feel I could sleep for another 12 hours, I do feel awake enough to write the blog entries from Friday and Saturday and try and get some work done and so off to work I go, Hi-ho, Hi-ho, … 

 

Oh well, best laid plans… 

I made it as far as 2:30 pm, then crashed till tea time, stayed awake for nearly an hour after tea, then that was it for the rest of the night. 

It seems the only time I have any energy is in the mornings when I am fighting the exhaustion, but I am able to cope. In the afternoons, if I have to go anywhere I can sometimes push through it, but I pay a high price for a day or two. 

It just isn’t fair, all I was doing was driving to work on a normal Friday morning and my world turns upside down. Never mind the accident, the side effects of the cancer drugs are such that whilst they may be (we will know after February’s scan) slowing down the growth of the cancer, they are what is limiting my life. Oh well, better the devil you know I guess, and I can’t say I want to feel the full effects of the cancer anytime soon! 

Back to work – Monday 29-Jan 

After another long night of sleep, I am awake enough to get back to work, but it’s a bad day for nausea and I need to stay sat at my desk, very still, to avoid triggering nausea waves, and in general I’m just feeling lousy. I am right fed up I can tell you, and despite medicinal chocolate and getting work done, my days have become a pattern of trying to work, then collapsing, blah, … 

Selfish Day – Tuesday 30-Jan 

I did not shine today, whatever else is going on I remain autistic and along with that goes an inability to see how what I want might not be what someone else wants or needs (also known as Theory of Mind). Well this morning I displayed this in spades. 

When I was just fighting the broken bones, I was enjoying having a salmon salad for lunch, as the Pazopanib started to take hold, I went off it. Today I decided I needed to try it again as I am concerned I am just not eating very well and whilst I can excuse that by saying “well anything is better than nothing”, I felt that anything I could do to help my body the better. So far, so good, excellent motivation. We had some salmon in the freezer but not the salad bits, so I popped over the road to our village shop but unfortunately, they had everything but the spring onions. I decided the salad was impossible without them (really Bean????) and so we would need to go to Sainsburys. I returned home and told Teresa that I wanted to go to Sainsburys, this morning, now! 

I had done the right thing and gone to the shop on my own and not asked Teresa to go, but even though she said to me – we can call in after I take you to work tomorrow, that made no sense to me because I wanted it TODAY. 

Before all this, I had already insisted to Teresa that we really needed to get on and move the rest of the wood, so she had got dressed in scruffy clothes for wood-moving. Now she had to change again into something presentable for Sainsbury’s. 

Anyway, she got herself sorted and just before we left the house, it hit me what a selfish bastard I was being, not showing any interest at all in what she wanted or needed to do. That had me in tears, Teresa feeling guilty for me being upset and, on that note, off we went. 

It was a typical foggy day in West Penwith, all the way down to Newbridge – Teresa hates driving in the fog. 

But she did it, we got what I wanted. I forgot the cucumber but that wasn’t a problem (nor was the spring onion) so we got home, me very upset, Teresa upset, … 

I duly made the salad, it tasted like cardboard, and I’d not have it again. 

So, I had to do a lot of self-reflection today, realising that I was becoming increasingly selfish. I know it’s part of being autistic and I have to consciously make myself remember it’s what I do without thinking, but I’ve been feeling increasingly sorry for myself of late and that resulted in me not being aware enough. 

So, I have neglected my wife and my daughter and got too wrapped up in my own worries. 

Finger out time Bean, you need to remember to be more aware. 

So, I am trying harder but also feel very ashamed of myself at the same time. One of the hard parts about being autistic and in relationship with NTs (Neurotypicals) is having to constantly remember that they don’t understand. If Teresa had been rude (in her terms) and told me that I was being unreasonable, chances are I would have stopped, thought, realised and agreed. Instead she was nice and did it because I asked and she wants to do all she can to help me. So, we are both to blame 

  • Me for not spotting my autistic nature was running the show 
  • Her for being too NT in her response to me 

That’s nowt to do with accidents, drugs or cancer, it’s just one of the problems of living in a mixed marriage (as we call it), it just gets exaggerated when you throw in everything else that has been happening in our lives. 

Oh well, try harder Bean 

Blood Pressure rising – Wednesday 31-Jan 

We regularly monitor my blood pressure as not only do I have high blood pressure (easily controlled)) but the Pazopanib pushes it up. Over the last few days it has gone up. The Tramadol (an artificial opioid) pushes blood pressure down, so the fact that I’ve reduced it from 300mg a day to 100mg a day has pushed up the BP. This morning we visited my GP and agreed an increase in my basic BP drug (Candesartan) from 8mg in the morning to 8mg in the morning and the same again in the evening, keeping the others as they are. 

After that, it was off to work for a few hours – Teresa driving of course. We are both still very fragile after yesterday and it’s going to take some effort to bring things back to a better place. My daughter has also been getting a poor deal from me, so I need to take more care of her too. 

By the time I got back from work and spent some time with daughter, I felt that we three were on a better footing, I just need to keep my eye on the ball. 

Having multiple broken bones and cancer does NOT excuse me from being a human being, just as being autistic didn’t, even though it might be harder when they are added together (and it is) it’s no excuse, so Bean is trying harder, … 

Just an ordinary day – Thursday 1-Feb 

Managed a full day’s work, what more to say? Woo-hoo… 

A day out, the new norm – Friday 2-Feb 

Asked Teresa when we were next shopping, I expected her to say the weekend, she didn’t; I asked when, as there was some food stuff I wanted. She said she’d do it over the weekend and combine it with a trip to Truro she wanted to do. Five minutes later, in she comes to my office, apologising for breaking the autism rule (no sudden changes in plans) to say, if I was up for it, she wanted to go today so she wasn’t out all day Saturday as she was going to a concert the same evening (Richard Digance). After my behaviour on Tuesday I could hardly say no, indeed didn’t want to, and so off we went and a long day later got home just after 3.00 pm. I felt wrecked, but after a half hour flop I went to my office and worked through to 6.00 pm 

It seems that I need to get my head around the new normal 

Old                New 

Normal         Tired 

Tired             Exhausted – unable to think 

Exhausted    I never want to be at this one! 

Postscript 

Nothing stays the same. The broken bones heal, or in the case of the collarbone, settle down, the cancer meds ramp up their side effects. I do wish I could work out what my new normal is, but I never can, even if it feels the same, every 3 months those scans will reveal the truth. 

Oh well, I think I’ve got my head clearer about separating my anxieties from my responsibilities as a husband and father. Not always easy, and some days not possible – those are the days I need those around me to understand. I guess they will if I do better most of the time, fingers crossed 

The Bean, Pendeen, 10-Feb-2018 

 

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