Chill… Take a Deep Breath… You’re Not Doing Too Badly

Chill… Take a Deep Breath… You’re Not Doing Too Badly (but see postscript for afterthought:-))

If someone else suggested these words to me, I know immediately what my reaction would be… it would be hostile, defensive, and dismissive. I would get embarrassed, look away shyly, get snarly, and self-flagellate myself. It is up there with “Be positive” and “It could be worse.”

Why? I don’t know why. I am an accountant, not a psychologist.

This is partly me as a person and the way PD has shaped me these last five years. My intensity, stubbornness, will, and determination are probably my secret weapons. I must fight, I must push, I must keep rebounding.

In my worldview (and I am not alone in this), it is the way it must be to fight this disease. I must grind on… it is a constant war.

However, I need to learn to say to myself… Chill… take a deep breath… I’m not doing too badly all things considered. I would not say this directly to others, but to myself, I can and need to.

I am doing okay. I am here writing this, albeit at 2 am. That means I have my mind. I look around me and am surrounded by photos of my wife and kids, all of whom I love to the ends of the world and all of whom I am fairly confident love me, despite the degree to which I can annoy them. I am still working and employed (albeit in a slightly different role) and am contributing positively to both work and society. I have good friends and have recently been blessed with the arrival of new technology in the form of the Produadopa/Vyalev pump, which has given me a huge boost. I have seen that science is fighting back. I have problems and challenges for sure – but all things considered…I am doing okay!

I need, however, to take a deep breath and recognize it and for a few moments chill. The constant intensity, focus, and drive can often have their own dangers. It creates unacceptable demands, fuels stress, and can lead me to push too far in some cases (as you have probably read if you are not completely drowned by my posts, which is yet another sign of the same).

I am beginning to learn that I need to control and guide this secret weapon I have. I need to conserve energy and fight a clever fight and not be overly harsh on myself.

But it is a careful balance I have to find. This drive, determination, stubbornness, and willingness to endure significant pain and discomfort is the key to the long-term fight. It is a nasty guerrilla war against a very dangerous opponent, and I need to dig in.

What you have read above is the morning dialogue within myself. It is not a one-off; it happens on many days at different moments and in different ways.

I am slowly learning that at times I need to take a few moments to come up for air, take 5-10 deep breaths, give myself a metaphorical pat on the back, and then get back to the fight.

I don’t personally take well to too much positive feedback or pats on the shoulder, but sometimes I need to hear it from myself and sometimes I need to hear it from others (A tip – I will never enjoy hearing it to my face but will occasionally smile if through comments, texts, or messages because it is one degree removed so I don’t have to respond directly. Why – who knows).

I have to say this to myself exactly because of and despite the pain and indignity of a disease that at times (e.g., recently at a wedding and in Camden Market) turns me into what can only be described as very public humiliating version of myself – unable to talk, walk, stand, or move, aged about 45 years in a moment.

This will be a constant balancing act, like the basic fight to balance our dopamine levels. I have to push myself beyond the limits to know I am still battling as hard as possible, but I need to do it carefully and using experience and knowledge. Otherwise, I will fall, suffocate, choke, or otherwise damage myself physically and/or emotionally. Will I always get this balance right? No idea.

For now, I am doing okay, thank G-d. I will only hear this from myself.

The message to others in a similar internal battle from me to the extent you will listen… keep fighting, keep the stubbornness, dig in. Over time, however, I think we all have to take a moment to ‘chill’ and reflect that we are all in our own way and stage still in the fight. We also need to develop confidence that we can take a deep breath without the fear that we won’t be able to turn back on the strength… we can find the balance.

I have no idea whether this blog is helpful or not to others – again it is not something I will ever directly ask but it is helpful to me and I guess it is your choice whether to read it or not. Wishing you Shabbat Shalom if that is relevant to you and a good weekend, happy end of holiday period and a good 2025 for anyone else.