When My 'Good' Health Days Are Disappearing

I live for the good days! Well I did, until they stopped happening.

I have severe chronic asthma. It causes me such breathing difficulty that I have a disability sticker. I sometimes can’t walk very far without a rest. And, I sometimes have to lie down after having a shower. It is hard to live actively when you can’t breathe! I just cannot do anything.

But, my good days are disappearing. I have had the flu recently and my lungs just have not been able to function since then. The flu started at Easter. I haven’t had a good day since a few weeks prior to Easter.

As a person with chronic illness, this loss of the good days, is another thing to face. Chronic illness gets more chronic! And the illness gets more ill. And that means having to make further adaptations. Adaptations that are physical, emotional, and spiritual. Lots of adaptations!

Driving is mostly beyond me now. Even preparing a meal is exhausting. I can’t go to church, I watch it on TV or my iPad now. Lots and lots of things. Changing. But, I believe that I’d rather think more about what I can do and perhaps even add a few new and different things to my activity lists. I like to color in, to sew by machine and hand. I enjoy reading, doing crosswords. I could add some pencil drawing and think of a few more more sedentary activities!

I am using a nebulizer four times per day. It delivers a very large dose of a medication that has these side effects:

“Fine tremor, anxiety, headache, muscle cramps, dry mouth, and palpitation. Other symptoms may include tachycardia, arrhythmia, flushing of the skin, myocardial ischemia (rare), and disturbances of sleep and behavior.”

I certainly experience many of these side effects. These side effects compounded with my general lack of energy from insufficient oxygen result in me physically, feeling pretty rotten! The constant shaking makes even the simplest things hard. For example, my hands shake so much that I keep dropping food all over myself!  Today I tried to make a toasted sandwich but I was shaking so much that I kept making the filling fall out! I knock things over. I am pretty clumsy too. Can’t type properly either. My posts and texts are riddled with typos.

So what do I do about the loss of my good days? I don’t have the key to this, but maybe some of you might have some answers? I would love to hear how others accommodate this sort of change.

I often think it is expectations that cause me my greatest problems.

1. Am I expecting there to be no deterioration in my condition? Do I really expect it to stay as it was before I got the flu?

2. Am I expecting to recover from an illness (flu) as quickly and as well as I did prior to becoming chronically ill?

3. Am I expecting my doctor to give me some answers? Today, on the phone, she said to me, “There really isn’t much else I can do for you. I don’t know what to suggest.” So, she’s at a loss. And, I can only hope for a return to at least some good days…Please?

4. Can I accept that my life is now going to be without the good days? I might just have to. It’s not as if I have much of a choice!

5. Can I redefine a “good day”?   I don’t want to, but I may need to.

6. Maybe I need to modify my expectations regarding the frequency of good days.

I remember watching and spending hours with my mum who lost all mobility and ability to do anything much at all. Even being fed. I would just sit with her and chat and just sit when she dozed. She always amazed me with her attitude! When she was 92, I asked her how she coped with all that was happening and she said, “You know Rosie, this is life. You need to learn to accept it, just as it is.”

At 92, my mum was still giving me lessons in how to live.

Getty Image by natalie_board