Category: Myasthenia Gravis

a condition causing abnormal weakness of certain muscles.

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Give me a freaking break….

Today was a full on Blitz taking up all my emotional space.  I’m feeling overwhelmed and empty with the urge to give up or run away.

Supporting others is draining but I’m fairly good at it.  Zero medication today.

It’s a Monday so maybe they were just saving it up for me.

On a different topic, ever notice how some people put all their data on a single SmartPhone that is not fully backed up?

It’s like the Filofax era……lose the device and you are screwed.

Or even more likely, the device fails or is breached.

Why keep 5000 emails on your device?

People just haven’t got the time or the interest in taking care of basic personal system administration tasks like email clean up or password management.

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New Batch, New Title

It’s been at least 4 days since my last dosage and all it well.  I pick up a new batch today.

Avoiding the hype and play the game

No symptoms, which is excellent considering my recent landlord stresses.

Over the next few days, I’ll grab a physical copy of Horizon Zero Dawn, probably from Argos or some major retail store.

I’m having to consciously avoid the hype and spoilers but so far the FarCry Primal comparisons point to it being my kinda game.

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Circle of One

Fell asleep at 4:30 am, I don’t know why I do this to myself.

Self-induced chronic Sleep deprivation (-3 hours)

Failure to plan personal meals

Failure to exercise

Failure to seek medical assistance

Tendency to ignore my personal health

Failure to focus on personal grooming

Failure to listen to my music

Failure to take some quiet time during the day

Note to self:  Stop damaging yourself and get some “actual” deep sleep every night.

60mg today, running low.  Time for a prescription refill.

On the upside, I have no knee pains and can run up stairs again.

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FALLBACK

Myasthenia Gravis strategy means have an early-warning system

16:25: It kinda happened mid-sentence, a sudden surge of weakness behind the right eye socket rendering me temporarily stunned and unable to think and function.

The rest of my body is fine but looks on unable to help.

Myasthenia can be a Son of a Bitch for timing and for me, it often hits during times of intense personal emotion pressure from those close to me.

Standard Operating Procedure kicks in and I head to the nearest bed to administer nature’s cure….PURE SLEEP.

21:12: Things are back to “normal” and I’m feeling strong and alert. Checking digital messages to see what happened while I was missing in action.

60mg of Pyridostigmine sit on my desk, I haven’t taken any today.

I should hit the gym but think I’ll just finish up in the office, leave around 11 pm and then hit the PS4 till 2 or 3 am.

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I can see clearly now the rain has gone

It’s easy to think you are actually making progress when you are sooooooo busy.

Most time management systems will tell you to focus on the stuff that is “Not Urgent” but Really Important.  Things like Birthday celebrations or my PS4 hardware replacement need to be high on my agenda.

First Blood: Had an excellent gym session last night so my mind is very alert with only a slight twinge behind my right eye.

I’ve decided to lower my dosage of  MESTINON® (pyridostigmine bromide) for a few weeks till I get to go home again.

London is my therapy and sanctuary.

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My own personal Berserk Bomb

I found myself using the Berserk Bomb in Far Cry® Primal  again and again.  This handy weapon fools your enemies into attacking their own tribe and sends them into a high octane rampage.

Winning the fight against Myasthenia Gravis

This is pretty hilarious especially watching the bedlam when you have a high vantage point. I guess I marvel in seeing it from the other side.

Myasthenia gravis is a Smart Disease, one of nature’s ultimate Berserk attacks.  It’s a rare Autoimmune condition that causes my body’s immune system to actually attack my healthy cells. What’s worst it that it’s a bit of an invisible condition so you could never tell if I’m having a good day or bad day.

Today’s a good day and I’ve taken a low dosage of Mestinon to dull the attacks.

Thankfully, I have a great neurologist and have been fighting this thing for 3 decades and still winning.

Focus on your strengths but be aware of your weakness