Not an ALS update

My Aunt asked me to give a general update on how I’m doing, and normally I try to write something informative and positive, but I’m kind of “SCREW THAT” I’m feeling shitty, my left hand seems to be getting weaker. I am tired most of the time and sometimes I am blind with tiredness. I become so exhausted that just want to lay and not get up.

Last night Susie asked me to get her some water and I said no, and then walked upstairs and fell asleep in my clothes. I woke up 12 hours later. I get irritable, not the normal kind of irritable but the type that I would describe as stabby, mean and nasty kind of irritable. The kind you have to apologize for the next day, it’s embarrassing.

Boomer (our dog) shit in the kitchen this morning. Actually a decoy shit because he had shit again on a brown rug that I didn’t see and stepped in. It was such a huge poo that it went over the edge of my Birkenstocks. He’s a good boy, but it was a hard way to wake up. Everything is cleaned up and I am airing out the house.

My throat is sore and my tongue still deviates to the left. My voice is hoarse and in the back of my mind I am terrified that my next symptom might be the loss of my voice.

There are days I wake where my whole body aches, and then there are days I wake feeling just fine. It’s not exercise related, it just appears to be random. I once was so fit, now there are days when walking up the stair just hurts.

My left arm twitches constantly, the nerve is always firing in my forearm. It has become so constant that I don’t notice it anymore. I have constant pins and needles in my left hand and my arm aches and hurts like hell if I bump my elbow, which I do constantly.

My lower intestines have revolted and it is as if someone has rubbed my anus with poison ivy. It might be related to my change in diet or something else like stress. Who knows what the cause is but what I do know is that I can’t walk around scratching my ass all the time.

So today I feel low in body, mind, and spirit and all I want to do is eat ice cream.

As I go through this process of waiting to see if another symptom might emerge to help with the diagnosis there are days I feel fine and I think it is all behind me and there are days like today where I feel there is a sickness lurking inside me like an inky shadow.

3 thoughts on “Not an ALS update

  1. Kay Squire says:

    Oh Max, even in that state you can make me laugh & Boomers ‘slip’ reminded me of Zac & the orange carpet in Raumati . .

    Max, i have just asked myself Why I would tell you the following but you will figure that for yourself
    Remember when you last came to Nz & I had imprisoned myself in my house with what was
    ‘triggered’ by heartbreak
    I was feeling ALL of those thngs
    that you describe: I would get up at 10am, shower & dress just to
    lay on the floor looking out to the
    garden & then I would go bck to
    bed at 3pm until i got up the next
    day to repeat the same pattern
    over & over.

    I lost the use of both my arms, first the rigit arm & then the paralyses moved up across my neck & down the left arm~i couldnt clench a fist, i couldnt drive & i couldnt even do my jeans up. While i lay there Every possibility went through my mind & after my initial encounter with specialists i realised that their own View & experience was Too limited so i Accepted that there Were other possibilities beyond what science had discovered & that i did Contain All oem those possibilities wthin every cell wthin my body
    My muscles Did atrophy & my body began to dissolve away (to 40+ kilos) & so did my supportive network because i could Never get up & open the door & usually not even the curtains~but What can you do?
    The Honest Truth is that How i got through it was that i gave up Caring whether i lived or died & i only Realised some years later that it was That which dissolved the Fear & as i have said to you earlier that FEAR IS THE CAUSE OF YOUR EXHAUSTION.
    That particular part of my process took 4yrs but it even got worse until after 10yrs i finally ame Out of it & i Am Still Alive.

    Would i recommend it?
    Of course Not & Now i have learned So much abot myslf & the Truth & whats Real that it Isolates me from the Mainstream

    • Kay Squire says:

      Cont~isolates me frm the mainstream & at one point even That was one of my Fears but I am Not afraid to stand alone wth what i Know to be True-are You
      & do you even Know what is True
      Of course you dont
      Max, you are Full of Fear.
      No amount of mind~fucking
      counselling can dissolve the
      Fears & what is Not True, from your physical body where you
      have stored Every pain imaginable, if not just for yourself then for Every injustice on ths planev that you have Ever encountered~do you think that That could be possibly be reduced to One pathetic label & put in a jar callf ALS ? Dont you thnk that sounds ridiculous

      Max, the Meaning of life is Bigger than where you are looking & its Deeper & its Harder than finding an answer on fucking Google
      The Answer rests within You & you need to Find the Strength to say NO to Everythng else & take On the journey of YOU & Commit to do Whatever that Means & There You will Find the Meaning of Who you are~
      Jesus went into the dessert for 3yrs & Buddha, as Siddhartha took on a similar journey of REMOVING hnself from the world & its Bullshit. If you havnt read Siddhartha i highly recommend it
      Max, you Already KNOW what you Need & you’re not Doing it !
      Being Mr Nice isnt working for you so let that be the 1st thing you seperate yourself from & just keep Peeling away the Bullshit until it is Done & that should keep you so occupied that u wont have time to give meaningless labels to the symptoms youre feeling
      Damn the day that you ever had ALP planted in your gullible mind.

  2. Kay Squire says:

    Max, it is no mistake that you are a part (altho apart) of this weird family of ‘individuals’. When you Do step up & Own your birthright it Will give you the permission that you Need to be a Freak & that in itself will also be the Blessing♥♡♥
    I am currently also in a difficult patch with an Extreme body condition that had me on my back yesterday, on the floor just providing the Space for the condition to ‘swamp’ me in the hope that i could give it a Voice
    The crux of the issue is that in my life ive had no support or encouragement & nor do i hold any blame bcoz i have made that my learning. The Point is ths, where it relates to you~we Dont need Help but it Does help if we are pointed in the Ryt direction to Help our Selves & i didnt have That becoz No one b4 me KNEW
    You Have that if you want it
    Sean, our path Is the Path Less Travelled~

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