Approaching the 1 Year mark

As time goes by I can do less and less. It is so fucked up.

I would love to potter around in my garage and just fiddle on my own time. I have to sit and watch how grab rails are put up in my house for me, or a front door ramp is made for me. Normally I would be the person making stuff or at least helping - nope I have been reduced to "supervising" from a wheelchair.

All these things that I miss or cant do lead to major frustration, depression and and intense sadness I feel guilty for the stress and exhaustion Jeanette is experiencing and the kids (my daughters and son -in law). They the ones that do it all for me, specially Jeanette. She is my safe zone, the person that just knows how, but she is at burning out phase.

I'm tired of this illness. It makes me fear the future and I hate the isolation I feel.

I don't see many visitors anymore as it becoming difficult to get out the house and I get tired quickly. My neck muscles have weakened and my head is heavy to hold it up.

We all pissed off and gatvol of this illness. This disease robs you of everything! I cannot have a bucket list because I am not mobile enough to complete anything. I'm just trapped here in a body but my brain works find.

My brain works very fine, so fine that I don't sleep. Sleeping tables or anxiety tables are a flippen joke. It has the total opposite effect on me - lets keep Rocky wide awake the whole fucking night. If it is not keeping me awake the whole night, it has made me paranoid that i will go into a deep sleep and suffocate if I roll over. Poor Jeanette needs more than 90 minutes of sleep a night. I do try and let her sleep, but if my nose itches she has to scratch it for me. Or if my arm falls down next to my body, she needs to lift it. If I need a sip of water, she has to get out the bed to hold the glass. I even have to sleep sitting up because if I lay down, I wont be able to get up at all and the stupid pillows always slip down.

I have had a very bad lung infection the last few weeks which has increased my panic attacks and made sleeping even worse. I cant cough any phlegm up cause it gets stuck and I cant get air making me suffocate. I have no voice, it is a mere whisper or hoarse sound. It should improve with the antibiotics.

We had to resort to a wireless door bell for when I need to call Jeanette cause she cant hear me in the house. PS: I constantly need Jeanette. (but sometimes I am cheeky and call her to help me sip a beer... ☺)

The reality of this disease is far more intense than I can ever describe in a blog. You need to live and see it daily to understand how inhuman it can get at times. It is utterly fucked up. It is unfair and wrong for anyone to experience this, but we will keep going day by day.

February month we lost Joost v/d Westerhuizen to this wrenched disease. It is heartbreaking, scary and depressing, but we need to be hopeful, keep our faith and fight.

We all thank Jooste for making this illness a household name in South Africa. May we all keep praying for a cure or treatment.

March is floating on by and we keeping moving forward in the battle. My youngest grandson turns 9 years old. Just the other he was a tiny little thing. How quick time moves and things change.

With April arriving it marks the first year of me being ill and still every day is a uphill struggle with new challenges to overcome in order to just keep living every day.

Until next time...