Letter from the North

The stress continues, but it is not pitch black at the end of the tunnel 03-Aug-2019 

I am a bit behind, we’ve been away at Shrewsbury Folk Festival, there is much blog material to come, but it’s going to be a while to catch up. Still this was finished so here it is, a couple of weeks late.

Sat 03-Aug-2019 

The aftermath of our strains at Warwick, followed by a psychologist visit and then the dentist continues, if anything, things are getting worse between us 🙁 

It’s not that we don’t want to sort it, but my insistence on more “balance” is proving difficult. 

I know in the end I will have to “disconnect” to take the pressure off Teresa, but from many years (and 3 marriages) of experience I know the relief at that by my partner means any effort to change things stops. 

So here I am, I can take away the pain for her (it remains for me) but that only guarantees that next time will be worse (because, for me, nothing changed) 

It is awful, I don’t want it to be like this, Teresa doesn’t want it to be like this, but she is having to climb a mountain and has no skills or tools to help her. 

It’s not fair, as an autistic I long ago had to learn to climb the neurotypical mountain and whilst I’m not very good at it, I do have some skill and some equipment. I’ve had a whole lifetime of experience of the challenge. 

Teresa like most NT’s has neither the experience nor the skills and in reality, is sometimes unaware there is even a mountain that needs climbing. 

It would be easy without love, I’d just turn my back, but I do and I can’t, not without a fight. 

So, here we are struggling. 

Sun 04-Aug-2019 

Still struggling 

Mon 05-Aug-2019 

Still struggling but reaching a crescendo of pain 

Tue 06-Aug-2019 

I went into work but had an email from Teresa, she wanted to talk, that sounded ominous and I said so. 

… 

So, we talked, not sure it’s any better but was less fraught. 

However there seems to be some understanding that  

1) I understand that there are things I need from her that Teresa cannot and will not be able to do and I need to do them – that’s hard. 

But 

2) There are things (often mundane) that Teresa can do that just reduces my workload enough that I have room for 1) 

3) Not being good at spatial awareness/diy is not an excuse for not making an effort outside your comfort zone, just like being autistic is not an excuse for bad behaviour.  

It’s unnecessary to get into details here – but we are more than happy to share 1:1 if our experience could help anyone reading this. 

Bottom line, neither of us give in easily, Teresa is aware albeit dimly (and sometimes) of the mountain between us, she is not really skilled but is willing to at least to try and climb a few inches. That’s all I need, if she will do a few inches on her own I can help her up the next few, … 

Wed 07-Aug-2019 

Teresa is busy today doing a number of things that have fallen by the wayside (ordinary stuff but it causes me stress), including helping me decide on a wheelchair – I’ll talk about it a lot more in another blog, but in enclosed spaces (buildings of any sort) the mobility scooter is not much use, having a turning circle akin the titanic! 

Thu 08-Aug-2019 

Ordinary (for me) diarrhoea like I get once or twice a week, no big deal, Loperamide and expect things to be quiet on Friday. 

Well after much agonising, the wheelchair is ordered – the one I wanted remained the one I wanted even after Teresa had looked for alternatives and had a “preferred”. However, when I went to double check it would fit in the space in Angelique occupied by the buggy, it didn’t! So, I needed one that “folded” in some way. Finding that and electric was difficult without spending thousands. So, we ordered the one Teresa found at a reasonable price. It’s not perfect, but will do the job. 

Fri 09-Aug-2019 

Today we drove to Plymouth for a Coccyx exam as part of the accident claim 

A storm forecasted (the one that cancelled Boardmasters) meant I was worried about rain and wind building. In the end I decided to chance it and we went. No great problems except managed to lose my stick (causes some walking and standing issues. We (Teresa, I was sure it couldn’t be there) found it in Teresa’s car which already had one. Only explanation I can think is that in the panic to go to the dentist last week I grabbed my cushions from my car and disabled badge and must have grabbed the stick. We were in Teresa’s car because there’s no parking so I needed dropping off. I guess it shows the state of panic I was in that I moved a stick despite knowing I have one in her car (always) and didn’t remember 

Visit basically OK, arrived bit under hour early and parking had been reserved for us. 

Consultant was nice, had to do an exam, now the only way for him to “examine” the coccyx area is the same as a prostate exam. I have had the indignity of such an exam a few times and it is really not any fun! However, it’s not fun for the doctor either so one just relaxes and thinks of England :-). HOWEVER, the point of the exam was to see if there is inflammation in the area of the Coccyx – oh yes, I think I expressed that very clearly at the time. Desiring someone to stop hurting you whilst having their finger up your bum is a difficult situation, fortunately he stopped and did confirm – yes there was still something going on there. 

Consultant was very apologetic about the “procedure”. 

Well, at least we know that, fix is a bit unpleasant as it involves “manipulation” of the area (guess how they do that!!!!), under a local anaesthetic so hopefully not painful just uncomfortable and then they inject cortisone (a steroid) that should (may) reduce inflammation. If may require 5 or 6 injections a few months apart and even then, may not sort it. Plan B is to remove the coccyx – wow, apparently that IS a thing. However, that is surgery and requires stopping cancer meds and tumours start growing so a difficult calculation!!! 

He also wants an MRI of the area (clearer than CT scans for bone mets). I can have one in Plymouth which means a day’s travel or I can try to persuade the NHS to do it. Not optimistic on that one, but will give it a try. 

The journey home from Plymouth was OK in all that wind however we did hit a squall on the Hayle bypass that was double speed wipers and 20mph and still mighty dangerous. 

As the fodmap diet is working quite well we had decided to try and extend things by Teresa getting me some grapes and she also got an Indian box meal from Sainsburys which we had for tea today. 

Oh yes, the Fodmap diet was working, having eaten an unsafe meal, oh yes, we are full explosion territory and another Loperamide. 

Postscript 

Mixed marriages (autistic and non-autistic) are never easy there is such a gulf in understanding (which can be in either direction) add in the stress of terminal cancer and well, hard verges on impossible. 

It cannot be helped by my awareness of limited time left to live and a desire that I am not going to “wait” for things to happen in the future, I may never arrive, so I have a strong sense of urgency. 

When that’s connected to someone you love (like Teresa) having to learn “new tricks”, well, it can be explosive 🙁 . 

We still love each other a lot, it’s all there is to hold us together at times, but that’s no bloody help at all in actually sorting things, that is, unfortunately just bloody hard work and persistence for both of us. 

Yup, all that on top of dealing with the f**** cancer. 

Oh joy! 

The Bean, Pendeen, 31-Aug-2019 

1 Comment

  • Kate Mole

    Dear Bean,
    All I can say is: keep plonking along with it all. All the issues, and all the difficulties and the invasive procedures and the uncertainty. Just keep on with it…….
    Your friends are thinking of you.
    Love,
    Kate.

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