The bad days can be very bad and very, very dark.
I warn you, dear readers, that this is probably not the post for you if you are having a dark period at this time. It might not be what you want to hear right now, but then again…maybe it might help.
Dark times with diseases are very dark, so dark that they can consume you. They might start like any other day but they can turn quickly with a flare of pain or a memory of what life used to be like.
In my previous life if I had a bad day at work I could go home. I could retreat. I could watch TV, have a drink or do something to try to put it behind me. But here. Now. The dark doesn’t let me go like that. Not that easy.
There is no such thing as easy anymore. I miss those easy days. The type of days where you don’t hurt all the time, and your life and your body is still yours to command.
The dark times are the hardest things I have ever known in my life before. Before this. Before these diseases took over. And yes I have seen my share of difficult times before. But nothing that compares to this. This life. The life of multiple diseases and daily struggles is not easy and I wish there were better ways to truly describe it.
My specialist said recently, and quite casually, that she found it challenging at times when she wasn’t completely sure which disease was flaring or worsening, or which to treat first.
[blank stare] Imagine how it feels!
I can no longer know for sure what is doing what, or which thing is getting worse, or how to control or slow their progression.
And then the dark creeps in.
I know that some doctors will simply dismiss these feelings as being a sign of depression and shake some antidepressants at me… but…
Is it depression? Is it frustration? Is it pain? Is it grief? Is it simply feeling the reality of it all, unfiltered and uncensored? Or… is it all of them at once.
Should I add another med (antidepressant) to the pile of drugs I am already taking? Will that really help?
I have been told that depression makes you not want to get out of bed. Not want to shower or dress. It’s a feeling of numb desperation. But I do want to do these things! But I want to do them without pain or disability!
Over the past decade I have spent most of my life either in bed, at home, in the bathroom, in doctors offices and cycling through meds, and I begrudge every moment.
I have asked myself what more things will be taken and what things will survive these diseases?
Not everyone will understand these questions but I am sure some of you do. Some of you know and some of you know that there are no easy answers to these questions, if indeed there are any answers at all.
Some things don’t get fixed. Some things don’t get better. And incurable isn’t just a diagnosis, it’s a dark place sometimes but I am doing my very best to find some light.
If you are there at this time too then I hope a lighter moment will find you soon.