ghost that is scared and tired evil rat stopping him getting to bed



It is one of those days again where I want to get things done, but my body has other plans.  I am just coming out of a bad ME crash but mine are strange. They come in waves throughout the day.  So one minute I am feeling fine-ish , never fully fine but I will take fine-ish over the rest anytime! Then the next minute, boom, I am on the sofa wiped out barely able to keep my eyelids from closing or moving my arm to scratch my head.  Yet I am not tired or sleepy, my mind is screaming to get up and do the fun melting things I love and enjoy.  My body wins this time and I have to accept it and wait for it to lift.  Luckily for the past 12 years of having this horrible illness, my crashes have always lifted.  I am well aware of those with ME who have never come out of a crash and are trapped inside a body that is so fatigued they cannot move and are fully bed bound.  This is something I worry about everytime I crash but am super grateful every time it lifts.  

As I write this I am sort of self healing at the same time.  This recent crash today was so bad, I feel just like the ghost in the illustration.  So sad and frustrated and the rat is my illness taking over my life and stopping me getting real proper rest when I need it by more often than not keeping my mind active when my body shuts down.

The other cruel side of my illness is brain fog!  My head feels muddled and I cannot think straight or communicate what I know I want to say, it just comes out wrong like I am a ghost on the other side screaming to be heard but I just can't get it out.  Again the illness mocks me by making my fatigue lift yet my communication is all over the place.

I have to wait longer for the brain fog  to lift before I can start typing this piece for you!  Thank feck for spell check and grammar check on computers nowadays, am I right?

I will never give up while I have a chance at doing anything. I will take it with both hands, or whichever hand hurts the least at the time!  I am writing this to self heal as always because writing has always been healing for me.   I am also writing to you, to feel connections with you because I have never forgotten how I started my chronic illness journey.  I went from lost, alone, scared and losing friends to finding my voice and utilizing my wax hobby to help as a creativity outlet to find you through social media and ultimately through my brand Bubbas Meltys.  All a total accident but I am so glad I took a different path instead of falling at the barriers and limitations put up by my illnesses.  I chose to pick myself up…slowly…carefully and keep moving forward around the walls my illnesses kept putting up and still do.  I am not saying it is easy, and I fall back down so many times and sometimes think there is no way around this wall this time.  But the part I am so proud of is the strength I didn’t know I had to keep getting back up again and again and again with your help.  I genuinely love myself and you for that!!

Anyhoo I am now feeling back to my normal fatigue and pain levels where I know I can get things done with, so I am off to pack more orders which is something I truly enjoy to do and I am sure you feel my joy and love and gratefulness every time you open your orders!!  I find it satisfying to pack them and always try to add some positive loving energy into each one.  

Please do not be afraid to chat to me via email here one on one or via instagram dm, I am always happy to chat and get to know you more.

I hope you find your passion like I have because I promise it really does help especially on the bad days.  But there is no hurry either, take your time and maybe it will find you, like mine did.  A happy accident.

Do not forget I am here for you always and I genuinely want you to know you are not alone in this spoonie battle.

Lots of Love

Bubba x

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