Letter from the North

Fatigue and the odd rant, 06-Apr-2019

Sorry no pic this week

Sat 06-Apr-2019

We collected Angelique from Firehouse this morning, happy with the work done, but we need to explore further before finishing the bed (e.g. we need a mattress) and sort out safe transport of the solar panel. It won’t be on the roof because we will rarely be using it.

However, by the time we got home I was wiped out.

After a nap, Teresa and I spent 1/2hr sorting out some of the old campervan gear that we won’t be using this season to make space in the shed to put the solar panel away safely.

By the time it came to move the solar panel from the van to the shed I was shaking so much that Teresa got rather worried.

I had to stop, lean on the van to stop myself falling over and fainting. After a few minutes rest I was able to move the panel to the shed. Went into the house, grabbed some malt loaf, Teresa made me a cup of tea and I crashed out in my arm chair.

That was it for a couple of hours and I slowly came around and had a tad more energy.

For goodness sake, it was 1/2hrs work on top of a pleasant drive.

I’m sure there was poo, but I have no memory

Sun 07-Apr-2019

Really normal poo in the morning, the sort that doesn’t leave any mess to wipe up.

That didn’t last, by the afternoon normal service resumed

Still exhausted, starting to wonder if this fatigue is not just the drugs but also the cancer itself. Fatigue can be one of the “signs”, we will try and look back over the last few years to work out if there were in fact warnings we missed.

As I write the Poo Chronicles (a book on cancer), I have been looking at what signs there were, in hindsight, that I had cancer. Fatigue appears to be one of them, however Teresa has a clearer memory of that than I do, I think it was so slowly incremental I never noticed and maybe it’s only now when the cancer is well developed and the drugs make the fatigue worse that I am noticing?

Interesting thoughts and we will think more.

Mon 08-Apr-2019

Tired, headache but plodding on

Blood pressure higher than ideal again – 125 ish over 87 ish which is more than the preferred 120/80 and worse than my usual 115/75

Tue 09-Apr-2019

Tired, drove to work and the main road out of the village was blocked (nasty accident), so it took me longer to get to work as I took a rural route.

At work, I normally avoid poo issues, but today was a bad day, severe abdominal cramps and an urgent need for the loo. At work there are two disabled loos. Both were occupied and based on past observations, not by disabled people. Given the mess I get in with diarrhoea, a loo with a sink that doesn’t require me to clean my bottom in public is quite a nice thing (too much information, yeah, but if nobody says it out loud, nobody thinks it may be a problem for the people around them). Ignore my mobility issues, gender stuff, it’s a matter of hygiene and as for the smell when it’s bad, well best kept private!

I understand why people who have no need to use disabled loos do, they are more private, …, but unless you need to, please don’t, some of us have no choice and when we need to go, we need to go NOW!

The road was still closed on way home, so another diversion and by the time I got home I was so exhausted I slept 2 hours and still felt lousy afterwards.

Evening more diarrhoea, took loperamide, 50 minutes of sitting quietly downstairs and yet more poo and took another loperamide

Going to be bunged up tomorrow, oh joy!

Still got a headache so checked blood pressure (headache can be a sign of raised blood pressure and it’s something I have to watch like a hawk). Higher than ideal again.

Wed 10-Apr-2019

Feel even lousier, headache, abdominal pain, exhausted. Checked BP laying down before I got up in the morning and it’s back to its “normal”, decided to swap evening BP meds from 8pm to 6pm. Apart from anything else it puts them well before evening diarrhoea and hence gives time for body to absorb before being explosively evicted!

Something odd is happening to me

Heart feels like it’s racing (it’s not), body feels like it is shaking violently – minor tremor in hands only

It feels like I am incredibly nervous/frightened – I’m not.

Autism comes with delayed emotional response – not all, but often, so this might be my reaction to something from hours, days, weeks even months from some triggering activity (that at the time was not at all traumatic), like PTSD without any felt trauma at the time.

This current feeling is new to me with no obvious triggers than I can remember, they are so extreme and I’m not sure why. I am not talking frightened; I am talking terrified!

Thu 11-Apr-2019

What do you mean you skip the poo bits? 🙂

There has been some chatter on the BBC news about how CBT cures IBS (irritable Bowel Syndrome) – Web therapy ‘calmed my irritable bowels’

Of course that was not quite what the specialists were saying, because, of course, it can’t, however it can make it easier to cope as it can redirect your focus from obsessing on the negatives of living with it.

A link to an opinionated article by Will Self A Point of View: ‘How I stopped being intolerant of food intolerance’ was also interesting.

The real problem I have is the gap between the headline and the reality of what was found. The actual research wasn’t even on CBT, but on delivering CBT remotely by phone or internet. That is a totally different subject!

Fri 12-Apr-2019

Ever wondered what a day without a poo blog entry would be like?

Postscript

As Thursday’s article notes, a PMA (positive mental attitude) is important to let you live with the consequences of IBS or similar (like mine) poo issues without it taking over.

There is a point of view that I should listen to such an argument and shut up and like Friday exclude poo from this blog, my answer is why?

Yes, of course, I have to ensure my head is not in an “oh, it’s too much, I give up” state.

On the other hand, anybody who thinks poo or cancer is easy to live with or that you don’t get depressed at times is incredibly naïve, insultingly so

So, in these blogs I try to be honest about what is happening to me, not because I am obsessed, but because there are far too many experts – armchair and professional who know what I need to do and are wrong.

I trained to be a counsellor alongside Teresa, the fact that I couldn’t complete the last month or so was because of unacceptable abuse from one of the course tutors; does not change the fact, that, putting aside the “physician heal thyself, problem of “don’t do what I do, do what I say, I live my life very aware of my strengths and weaknesses and try to not be dominated by either.

There are two fundamental ideas I bring out of that training

1) Being self-aware, that is, at its heart, what talking therapies are doing (CBT included). If you understand yourself and why you are reacting you can often do something about it when it causes you a problem.

2) Congruence, that is what the outside world sees and what is happing inside you is consistent. Another way of putting it is “not living a lie”.

I left the course because in order to pass it I had to behave in class in a way that was not consistent with who I am (in my case being autistic).

So, I write about my everyday thoughts and experiences because they are what my life is, poo is frequently in my thoughts, it doesn’t stop me doing what I want to do, it does make me aware of what can happen and what plan B I need.

I am sorry (no I’m not but apparently saying so stops people being offended) no amount of positive thinking will stop a diarrhoea attach when it’s happening and the absence of access to a loo is not a problem, problems are easy, it is, for the individual a humiliating disaster. The fear of that is real and unavoidable, CBT (or anything that increases self-awareness) means you recognise it could happen, you know your body well enough to know if it is more or less likely, you know what drugs to take and what food intolerance to be especially careful of, make sure you know where toilets are and then just get on with life.

That’s not obsessing, it is being realistic. I am autistic, obsession comes easily, but I know it does and I monitor myself and so does Teresa and she has no fear of pointing out if she thinks I am obsessing too much and I DO listen to her because I know I can miss it no matter how self-aware I think I am.

I write about feeling depressed, depression is not an evil, it is a natural part of the human condition, without it where is elation? The problem is when it takes over, sometimes drugs are the only way to deal with that if you have a chemical imbalance, otherwise “talking” therapies can help a lot. Self-awareness helps.

I know when I am depressed, that I am depressed, and that no matter how it “feels” that it will pass, that’s because being concerned that your body is not working properly or that you may be dead by Xmas is perfectly reasonable, but it’s not the end of the world, well it might be by Xmas 🙂 .

I would like to make it clear that this is about ME, depression hits people for different reasons and to different intensities. People vary with the support they have around them, they differ in the internal resources they have and some, as I said, have chemical imbalances in their body which mean that they have no choice as to how depression hits them or how they cope with it.

But for most of us, PMA helps and accepting that not every day can be a good day and that it’s ok to sit sobbing at the awfulness of it all.

So, I write about poo, depression and anything else that crops up in my life as a balance to my external appearance which is “you look good”. That’s congruence, ensuring that my inside and outside are consistent which makes it much easier to be self-aware.

So, the poo reports will continue, I have given you a day’s break from them, normal service will be resumed.

OK, I can’t help myself, poo has been awful for the last few days and I didn’t say. Does that matter. It depends, if you don’t have the problem, it’s a relief, I guess. If you do and think it’s only you that gets ground down by it, then maybe not, I hope the latter is the case because that is who that part of the blogs is for.

For the rest, just remember if we meet, I can go running off to the loo for no apparent reason and if things are bad, the farts are loud, extensive and really horrible. In public that is acutely embarrassing. It’s bad enough at home just with Teresa. Imagine in public, at work. At a friend’s house, I have no control, I really don’t, so for anyone who ever finds themselves in my place, it’s OK, if it happens when I am around, I hope we can both laugh, hold our noses and accept that fatal farts beats being dead 🙂

The Bean, Pendeen, 14-Apr-2019

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