So it’s been a while. I think I’ve been in denial about my level of function. I keep having bigger dreams and goals than what my body and mind can sustain. It’s incredibly devastating and depressing to have chronic illnesses. Currently, I have more than five chronic lifelong conditions. Don’t worry though, I’m not contagious. It’s only hurting me not you. That seems to be what matters.
I find I’m grieving a lot of things. I’m grieving the level of mobility that I used to have. The level of athleticism that I used to have. The level of energy that I used to have. The fact that I could multitask at times. The fact that I could do math in my head and come up with the correct answer. The fact that I didn’t need a nap at 9:30 in the morning. So many things.
People have told me of people that I’ve had strokes. They will recover, completely. It will just take a while. I am not recovering or healing. I am not getting better. This IS better. The things that I have are degenerative. And I’m not trying to be negative, but that is just the objective truth. And the fact that many of my healthcare providers and even people in my life, expect absolutely nothing from me?! That is one of the worst feelings I’ve had in my life.
And just trying to navigate the world where my disabilities used to be invisible, and I could “pass” as an able bodied person. Now transitioning into having assistive devices that are very visible. And learning how uninformed and ignorant people can be when they see that you have a visible disability. Some people assume that I’m low functioning, uneducated, unintelligent just because I have an assistive device? You don’t even know me. So because I have a cane, my headphones must be hearing aids. And my glasses can’t be regular vision colour correction glasses I must have some type of blindness even though I just drove into the parking spot. Some people think if you have one, disability , you have all of the disabilities. We live in a very able-bodied world, and if you’re not aware of that, you are likely able-bodied.
Also, healthy people do not understand chronic illness. Bless their souls. People distancing themselves waiting for me to get “better” and then they can get together with me? I hope they’re not holding their breath cause that day likely isn’t coming.
People that have had strokes and will recover completely. That’s wonderful for them. They may have spent months in a rehab inpatient facility.? I would love to be an inpatient rehab facility. I would love to have Disability that didn’t say “we don’t cover any therapies” as though they’re proud of that? You don’t cover the therapies that I need for the very disabilities that you have acknowledged that I have? That I’m being covered for? That’s how low the bar is?
Some people with different illnesses that are not lifelong. There are cheers and there are GoFundMe and there are people rotating to do visits and people paying for house cleaning and therapies and Psw‘s at home and nurses. But because my situation is lifelong and the specialist sometimes can’t say anything more than “at least you still have your humor. “ and they leave it at that not even trying to refer me to somewhere else who could help me if what I have is beyond their scope of understanding. It’s absolutely ridiculous.
That’s all I have to say for now.. that’s just my two cents.
N.A.Z. (Not anyone’s zero)
Just Mai 2 Cents 