Dear Diary : In the Spaces

Right now I am sat in a neurology unit. I was admitted yesterday, I arrived at 3pm, got to the actual bed for me at 9.45pm. This will typify my experience, lots of time and space ….

Time to think, or to be precise, more time to think, but now out of my space.

It will come as no surprise that I and Mr Mouse are introverts, and that with migraines as a constant issue quiet space and time are a big feature of our day. A hospital is loud, its busy, and of course it’s being a bay of four, plus staff, it is a permanent social environment. It not only drains me really quickly, there really is no chance to recharge properly and sleep is disturbed.

It is something to get through, tests, and repeating the story while really running on empty, but more, it is a week away from being able to make progress towards my goals, its a week on hold. A holiday is part of my plans, its in and it builds me up; hospital breaks me down.

This is no fun, this is not how I want to spend my time, I have almost no independence, I don’t have the comforts of my home, I don’t have my life, which goes on hold, and I slide gently, however slowly, away from my goals, while mentally this is a struggle.

However, the added dimension is external. People expect that is is a fix, like these tests will find a problem and I will get fixed, or that I am here to get fixed, they are wishing me a good outcome, when really, I have no idea what a good outcome is.

It is almost impossible to explain that, not only may the tests not find anything, even if the tests do find something, it is entirely possible that what they find may have no treatment and that there is no fixing this problem at all. The possible outcome is, while I may pick up a label or definition, that will be the sum total of what is achieved and that there will be no help, therapy, fix or even particular management strategy beyond learning to live with it.

And people say don’t be pessimistic, not realising that, this static model is one of the more optimistic outcomes, we haven’t even begun with the progressive degenerative models.

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