M.E. Myself and I

It would be easy to be deceptive and duplicitous and cite creative diversions as the reason it has been 6 days since my last post. Real life is somewhat less glamorous, with the primary reason being a kickback from my M.E. and hemiplegic migraines that meant I lost days. By lost, I am referring to the inability to perform basic tasks, the memory blackouts, coordination and balance issues, lethargy and tiredness, pain and of course hypersensitivity to light, noise, touch and the exhaustion combined with the inevitable crippling migraine that comes post paralysis and speech loss.

I know people think my description of “it is like a stroke” except no one cares is being a drama queen because there is no damage (apparently) and it is not permanent (allegedly) and the skills come back in a short time frame (not that sufferers notice), that is my experience and even what I have now which is a cluster of 3-4 attacks on one day or a few days every 7 to 10 days is debilitating and often requires a rehabilitation process to relearn affected skills.

M.E. makes the soup of recovery a little bit richer because now I get exhausted so much quicker, sleep more; but at the same time have much more broken sleep and have M.E. pain added to the pain from my chronic pain and the neuropathic pain of the hemiplegic migraines. So there are pain management issues of broken sleep, concentration, as well as side effects.

These are the reasons why I get frustrated and ride a rollercoaster in heart and head thinking that I have reached a better plateau where I can create and achieve a little more and let my productivity move a little towards my ambition and motivation. I am able to make progress on my ideas, take them off the page even, before a drop back not quite to my worst, but enough to make that level beyond my capabilities and leave me with agonising reminders of what I cannot do. This extends beyond just anything creative, with writing these two conditions, and their medications do nothing to help my creative spark, while beyond that, they make the ordinary things of life an achievement. Going out of the house is actually Dr’s orders.

I am not writing for sympathy; these are the current boundaries of my life landscape and the conditions and circumstances I currently manage. It is what it is. They do not dull the shine of the future, or my recognition that I have been to a dark place, gotten through that, and back heading in the right direction and living in the brighter, healthy places. I have a positive supportive friendship network, my material circumstances are not shabby at all, and I am able to create and look to the future still. I have opportunities I know and don’t know are on the horizon, and I have things I would like to do.

The change in my physical limits has forced me to change how I approach life, the days of burning the candle at both ends, energy drinks and 3am starts and finishes are over; the abuse of my physical self to achieve has been brought to an end, any attempt to replicate that approach to success results in a disproportionate cost of time lost and is suitably dissuasively unpleasant an experience to prevent me from reengagement. Philosophically, the experience of illness, the journey to now, and the ongoing management of a fluid situation of constraint has changed me as a person into someone I wanted to be.

I was working towards being a less hurried, want it yesterday, goal at any cost person, I wanted to capture that dynamic of my younger days where I was less driven at the expense of enjoying the journey. I had become, in my own eyes, a caricature overdrawn version of who I wanted to be, and needed to pull back, while knowing that I was addicted to that persona and the feelings of success I associated with it.

I have learned to break tasks down and use my physical and mental energy levels, consuming when energy is low, doing when energy is higher. I am in the middle of a huge clearance of my office and workshop spaces from top to bottom, as well as learning what I think will help me as I move forward, while also doing what I can to practice skills and the rehab I need to do along the way. It can make for quite a busy day sometimes. Which is odd given I am no longer employed or formally running a business, so apparently, I should have all the time in the world.

So while it is all about me; the key in this process has been the change from focussing on attempting to deliver what I thought was wanted. I was artistically and in business attempting to be market led and market responsive, what I meant, in practice, was that I let the opinion of others drive what I did completely. In business I lost heart with my project as I was no longer doing what I wanted because creatively I was looking at metrics and external validation via sales as a measure of value. I had gone from creating and finding out what the market thought, to attempting to find out what the market thought and creating what it said it wanted. The problem was, the marked didn’t want what it said, and I was desperately unhappy creating it. It was forced. I took the failure of an idea to mean I was a failure, rather than looking at why the idea failed, what about it did not deliver, especially as my product failed but very similar products appeared not to. I did not compare the two, rather taking market choice personally, as rejection of me, not the marketplace choosing what was a better proposition.

It took a long while out for me to reach the position of hindsight and realise that I had lost my way. It was humbling to realise that I had made this mistake before more than once and it was over a decade after my first error that I came to see what I was doing to miss the mark. I could have beaten myself up because in my own ventures my strengths were always rooted in taking an individual proposition to the market and offering something not already available, and not necessarily being demanded by anyone, but taking a chance on the creation of a culture or demand by example. Then once established with a customer base, I would reverse that strategy and attempt to only react to the customer and the market, the very thing that I had opposed to gain traction, and it was at this point the business would plateau out and usually about here I would sell it or leave it as established and successful.

I have learned, had I not slowed, had I not had life happen, I would never know that I am happiest doing my own thing, going in my own direction, at my own pace. Now my pace has been forced on me, and in some ways I am forced to do my own thing in my own direction by the fact I cannot jump into the mainstream race due to physical restrictions and I have to make a foundation in my individuality and in my own direction.


2 thoughts on “M.E. Myself and I”

  1. There’s nothing wrong with doing your own thing. Being “just like everybody else” is tremendously over-rated. I would much rather know somebody with their own mind, than somebody who follows the crowd.


    1. Definitely, the difference for me is for a long time I was under a lot of pressure to conform and maintain the appearance of being like everyone else and the appearance of what was expected.
      While in reality I was profoundly aware of the disconnect between my thoughts, my goals, everything about me and the expectations of me. The change has been that I am no longer in a toxic environment or embedded in a network of toxic relationships.
      The difficulty is that over 3 decades of pressure can be harder to leave behind than we want it to be. The good part is that I am blessed to be embedded in a network that is supportive and loves me precisely because of the things that previously were regarded as shameful and to be repressed or exorcised.
      Now I really want to be able to help people not go to places I went, spend toxic time like I did, and not experience what I did because I know what those things are like and I wouldn’t wish them on anyone.


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