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

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.

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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 Parkinson's 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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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