Life with Chronic Illness: Where are the very good days?

I’m currently (finally, I could say) seeking a diagnosis for problems that have been my companions for a long time, but haven’t yet been diagnosed. They are still there, even without a label attached to them, and they’re just as real. Tomorrow’s an appointment with a specialist about my knee and back problems, and I’m nervous because part of me is afraid of it being another waste of time (i.e. not being taken seriously, or brushed off and left alone without answers). The other part, who dares to hope for a good doctor and a diagnosis (probably not right away, though), is afraid of what the diagnosis might be.

What brought me to the point that I’m finally seeking a diagnosis? The realisation that my problems are not going away, and instead seem to be getting worse over time. And the fear that I might have to quit my dream job at some point if I don’t get help.

There are still good days. Good days are days when I’m not feeling tired all day, and when my exhaustion is not slowing me down mentally and physically. Good days are days when I’m able to go about my day without wanting to cry out in frustration, or in pain. Good days are days when I don’t feel too restricted by tenseness in my muscles. Good days are days when I don’t even think about pain killers. They are not days without problems. They are not days without feeling tired, or without feeling tense, or without experiencing pain. They are simply days when I can live a normal live in spite of all the problems.

And then there are very good days. Very good days are days without pain, days when I feel awake and can move without feeling tense or restricted. Very good days are also very rare.

And then there are bad days. A lot of bad days. And sometimes it becomes hard to remember how good days feel like, and it becomes hard not to confuse a random good day with a very good day, just because it feels so much better than some of the bad days.

As for very good days, there are times when I cannot remember how they feel anymore. There are times when good days are the best I can hope for, and pain becomes a constant companion. Pain, and feeling tired, and feeling tense. And those are the times when I wish I’d have a diagnosis, and some hope of getting better, and a doctor (or doctors) who understand me and who believe me and who know what’s going on with me, and most of all, who have a plan how to help me.

I want to remember the very good days. I want more good days than bad days, and I want very good days to be the best I can hope for, every day, and not be disappointed so often. I want good and very good days so I can be a better teacher for my students, and so I can be a better student, and so I can be a better cat parent, and so I can be a better wife, and a better friend. I don’t just want them for myself; I want them so that I can give more to others who are important to me. I want to share the very good days.

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