On a plateau

Last week the Consultant Neurologist stopped Jacq’s Interferon. We’ve still got some in the fridge but it’ll not be used. As expensive as it is it will almost certainly land in the bin. The stopping of the drug is not a problem in itself – the day following the injection made her feel terrible and her otherwise poor mobility was reduced greatly. The problem is that this event brings things with it.

It’s a realisation of just how much she has deteriorated even in the last year. It’s a realisation of how much our daily lives are affected, how much it affects the girls, that things can never be better only worse, that this house poses problems because of the stairs, that she feels guilty about x y and z and thinks I feel a b and c when I don’t but I can’t explain what I do feel because right now it’s me who has to be the strong one and all this comes as a shock to us because we both deal with it differently but in the same way – we block it. And an event like this makes discussion happen. And when you have to have a discussion one person in the couple isn’t quite as ready / prepared / thought-it-all-through as the other. So things aren’t even. And I’m sure we both saw the same news item and we both didn’t discuss it with each other because what was almost a theoretical discussion that was comfortable because of distance has become something more firm.

Take the spectrum of emotions. Take out almost all the positive stuff. J has one mix. I have another. But she can’t/won’t/isn’t able to reveal and release it. Neither can I. So it hangs uncomfortably. It has done for a week now which is – for us – a hell of a long time.
The cloud will move somewhere. We can’t banish it over the horizon any more though. There are large parts of the future neither of us want to happen. But they will. Crap.

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