A woman scribbling around a smaller version of herself who is trying to speak to her with kind words and stop her from scribbling

Dare to Care about Self-Care

Medication is only one small facet of care

Managing my Parkinson’s disease is a daily challenge. Often it feels like a burden and a chore. It can feel like having a full-time job (but frustratingly without the paycheck). In addition to taking the mandatory medication (levodopa), I am also acutely aware that there is so much more maintenance I could be doing. Doing these things would be beneficial for me because it would slow down the progression of my disease ... and who doesn’t want that?

*Warning* this list is not exhaustive and could have been much longer. Yikes! Some examples of the things that I could be (or should?!) be doing include ...

-Take daily supplements (Q10, fish oil, turmeric, yadda, yadda. The list is long).
-Do tai-chi regularly.
-Learn to activate my vagus nerve.
-Consume a low-inflammation diet ... or is it a Mediterranean diet?
-Receive regular deep tissue massages.
-Practice a daily mindfulness/meditation ritual.
-Commit to a regular rigorous cardiovascular (sweaty!) activity ...ideally with a physical trainer.

The barriers to caring about self-care

Where do I start? This list just seems so scary, overwhelming, and difficult to initiate. The commitment seems so onerous and more than I can manage. Another barrier to me engaging wholeheartedly with some sort of self-care regime is that as time passes, I find myself struggling more and more with low motivation, fatigue, and apathy. Therefore, for me the whole rigmarole mumbo-jumbo self-care spiel (that I am constantly bombarded with) feels like hogwash. It is more than I can dare to care about.

Helpful or hurtful... the quandary

I just want to be normal, low maintenance and carefree. I do not want to be curtailed, limited, or shackled by adherence to a rigid regime. The impact of my Parkinson’s disease diagnosis already weighs and slows me down so much. I am already shackled and limited by the epic malfunctioning that occurred in my body and brain when I was 28. So, for me, committing to and regularly conducting a rigorous self-care regime seems cumbersome and counterintuitive.

The confused conflict in my mind

I am not averse to self-care. I think self-care is a crucial component in maintaining my overall well being. But, my approach to self-care involves tinkering and lightly dabbling. There is no consistency or commitment. Whereas, on the other hand, all the varieties of different people’s Parkinson’s regimes that I have come across seem so robust, rigid, and regimented. This is not me; this is not my style. That way of life does not appeal to me ... it seems suffocating and stifling.

The price I pay

However, I have learned the hard way. If I am careless or chaotic and choose to neglect my self-care, then I pay a heavy price. I am the loser. Ultimately, it leads to my delicate and fragile eco-system collapsing, thus causing me to spiral into a state of devastation and despair.

Tired of being tired

It is stated that prevention is better than a cure. But by the time, Parkinson’s disease had reared its ugly head in my life, a lot of irrevocable damage had already been done. Thus, leaving me with very few options, other than embarking on implementing lots of damage control. However, I have found this path of attack to be this very draining and demoralizing.

Asserting my boundaries

Experience has taught me that Parkinson’s disease will (if I let it) suck up all my time and drain all my resources (principally my money and sanity). I do not have an abundance of either, so for that reason I stubbornly do not let it have too much of either of these things from me. But, for this decision I suffer and pay the price.

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