Chronic Illness

April 1, 2025

This one picture sums it all up perfectly about chronic illness...

Yet people seem to not think much of my illnesses when they (illnesses) aren't (yet) forcing me into a wheelchair, or worse, killing me off quickly. And the comments..."well at least you still have your health!!" ...where...where is my so called 'health' ... because I'm not dying right now from my conditions? ...no... but I get to be in horrific agony for the duration of my existence for whatever length that is...so I suffer until I finally do die...I don't know...some days...most days...basically all the time...this just seems like punishment for something I didn't even do. I didn't deserve to have. And I sure as shit didn't ask for.

And yet every day I get up and try to have a life (...existence...suffering isn't a life...) despite being in so much pain, and exhaustion from everything I do. I try so hard but the little bit of energy I have is used up so quickly. I'll work as hard as I can push myself, but then I'm out of commission for ...God knows how long... then I try again, only to use up what little I have to give...and it just repeats itself. I'm so tired.

I want so much to have a good day where I can function like I use to...like a normal person...even if it's just one day a week...even one day a month, and I don't go into this horrible spiral, then try to claw my way back up again. The tasks I get done are minimal, especially to what I use to be able to do...and yet the minimum I do now exhausts me beyond anything I could imagine. I enjoy working. I enjoy being around people. I enjoy being active...having fun...I miss my bicycle, and tenting, and kayaking, and hiking. Going to concerts, and dancing, and parties. It's fun to do hay, cut firewood, work in the sugarbush, but it's so exhausting it takes away from the absolute joy I get from it.

I had been a powerhouse...as said by others, I was a "Force to Be Reckoned With"! I still am, but I fail so easily now... I'm strong ... incredibly strong despite everything... and I am happy for that, as I would never get done what I do...but that strength is just ripped from me so easily now and I miss the long running energy I use to have that would keep me going and going ... I was unstoppable. Now, after I 'work', and that energy has become depleted, it takes me everything to recuperate...to even get out of bed some days is more then I want to do. And yet people don't see the strength it takes to function like this every day ... let alone just stay alive. Mentally and physically, I am always drained...I push to keep going, I smile and say "I'm Ok" when I'm nowhere near that, but I have no other choice.

I push, push, push, push, push ... until I CRAAAASSSSSHHHHHHH ... then I try to dig my way back up so that I can push, push, push again, and sadly, each time I crash, I go further down into that pit, making it that much more difficult to get back up again ... this is what my life has become. But I keep trying because this is the only 'life' I get to have. I hope my strength stays with me, I hope I can last long enough to maybe even see some sort of reprieve, maybe even a cure. I have the cards I was dealt, and I use them as best I can to 'live' a 'life' that is full of pain, full of mental health issues, full of trauma, full of loneliness and loss. This is a hard way to live. The lack of understanding makes it that much more difficult. So, I share what I am going through to one, feel less alone, and two, maybe someone else in the same situation as me, can feel heard and less alone as well. They will see there are others who do understand them and that we are all just trying our best to live a life with the shitty hand we were dealt. Just keep trying to do the best we can and enjoy the small blessings along the way.