damned if I do, damned if I don't

This is the damned if I do, damned if I don’t illness. It feels like that, anyway.

When you are raised to do your best always, work diligently, and provide for yourself, the transition into life with chronic illness is incredibly difficult. It is a humbling sometimes humiliating transition. These ingrained values and expectations battle violently with the new realisation that self-care is vital to recovery. 

At times, the internal struggle sends me mad and robs my freedom. There is little spontaneity and freedom in this life, as everything is carefully evaluated and planned for survival. I cry for the days where I could do something which didn’t cost me something else.

Activity = illness 

Rest = feeling lazy, depressed, unfulfilled

So you say, it’s simple, just do a little bit. Enough to feel like you’re keeping busy, but little enough to keep in decent health.

That would be perfect. But life just doesn’t come in bite sized portions: houses need cleaning, meals need cooking, people need seeing, events need attending, and every single time, there’s a cost to do it, and a cost to refrain.

When I leave the dishes in the sink for Ben to do when he comes home from a day at work, the cost to me is emotional. I hate my vulnerability, the burden I feel that I am, the guilt of staying home all day and pursuing only leisurely activities. Tears of frustration burn in my eyes as think how wrong it is that Ben has to do so much. 

When I make the decision the other way and do the washing and the vaccuming, I am tired and sore and need him to bring me dinner. I feel like I’ve lost again.

I feel like I’m damned if I see the friend and endure the resultant pain, and damned if I don’t because of the time lapse and guilt. If I cancel my appointment I feel relief, but also confusion as to whether I was right to do so. I accuse myself when I stay home from an event and end up feeling well, and when I go to an event and crash significantly.

Ben and I are invited out to catch up with old friends. Battle breaks out in my heart instantly. Should we go even though the relationship is unsustainable in the long term (due to family and more essential friendships), or turn down the thoughtful offer and risk hurting them? After great debate, a message of decline is drafted. It is based on a phrase I try to live by:  speak the truth with love. 

Thanks so much for your kind offer. We would have loved to see you, but to manage Danielle’s chronic fatigue syndrome we really have pace, and limit relationships...

As the message is sent off, I feel the typical wave of unsureness. How do I know that I’ve made the right decision? Maybe I’m just a selfish, lazy, hyperchondriac – I wonder, for the millionth time in a week. With so many decisions to make every day, I become weary and confused. 

Often the replies to my decline message show little empathy about how much we struggle with this situation too, and are ‘that’s ok’ in nature. The sting is milder each time, but it’s never pleasant. 

Most of the time, I don’t know whether I am being selfish or wise. It’s an endless conundrum. How little should I do to preserve my health? How much should I give out to the detriment of my body? And how will my body react to each thing? What is the best thing to do?

I don’t yet have the answers to the mental terrors of managing an illness. I know it will become clearer to me at some point, and if you have a tip for me, I would be so grateful for it.

All I know is that not everything is a right or wrong, and perhaps even the words wise or unwise are too strong. There is much grace for the things that matter. I can never know the consequences, and I can never micro-manage my life to perfection. I think the best thing is to stop second guessing and revisiting decisions. It’s the phrase of our decade and said too often, but it means something to me: Live in the moment.

Or as this blogger so beautifully shared,

“When I put my whole heart into where I am in living each moment, I will find (a lot more) peace and joy.”