A frank talk, okay?
For those new to my blog, I am Autistic and multiply-disabled, and am a semi-ambulatory wheelchair user. I’m also 62 years old now.
And my life today sucks unbearably.
I am not going to do the suicide route okay? But I’m not gonna lie…I am so many levels of hella tired of not living anymore.
I do have suicidal ideations every day because I am in a constant state of thick black depression, because my life is so bleak and lonely and utterly_fucking_boring.
That’s how I feel. I do not feel as though I am living anymore.
Every single month day, week, I just go to dialysis, and then home.
And dialysis is unbearable again because of a mean woman now who is seated two chairs down from me, who won’t stop yelling at me when I do my vocal stims during dialysis. They so far are refusing to move her away from me—and she keeps on harassing me during my treatments!!
I have been given full permission by my kidney doctor, as well as the clinic’s facility admin and the social worker there, to do my vocal stims full-on while at dialysis. Everyone there loves the melodic singing noises I make anyway, — all except for this one mean lady who seems to delight in making me upset.
I try to ignore her, but she is relentless, to the point where I cannot ignore her anymore.
Yesterday, her yelling was affecting my blood pressure. My systolic (the top one) was on the higher end of the chart while she was there doing her yelling at me to shut up my singing.
She’s a bully. They need to MOVE her from me.
My caregivers are gold, but because of the morning dialysis schedule I’m now forced to be on, I have a long stretch of time of several hours every single afternoon when I am not on dialysis, where I am in this house cooped up, and lonely AF for just one person to come sit and watch one movie with me and talk and visit with me.
I am thirsting to take some drives and go sit up at the beach and watch the ocean. And eat good pizza and torpedo subs from Gino’s Pizza in Pismo Beach!
I no longer am able to make ends meet financially anymore each month. Because of my monthly bills and the now sky high grocery prices.
My desktop computer is overheating sometimes now, and I need a desktop computer for my writing and blogging and disability activism. My disability community friends are all online. My tablet is also old now. So is my cell phone.
And I have no way to replace any of them if they conk out. Without these devices, I will be cut off. And even more alone and lonely than I already am.
I am laying awake most nights so worried I cannot calm down enough to get back to sleep.
I have frequent sick stomach spells because of the constant droning anxiety and worry over my circumstances.
I beg God every day to just take me in my sleep.
I need a way out that is going to not just sustain me, but lift me up out of this thick black stagnant trap I am in.
Before I pull every single hair out of my head.
Edited to add: I have just made a new Go Fund Me page.
What I wrote on my GFM page:
Hi, my name is Melissa. I’m 62 years old, am Autistic, have lymphedema on both legs and end-stage kidney disease. I’ve lived a long life of far too many missed opportunities, isolation and loneliness and have never been able to work.
I spend my days cooped up in a tiny cottage, with no one to talk to and no way to get out to take drives and go to the nearby coast. I get so depressed because I have always loved the ocean, taking pictures of scenery, and watching sunrises and sunsets. I’m a semi-ambulatory wheelchair user, and I have two caregivers who are gold to me, but because of my dialysis schedule and their schedules, on non-dialysis days, I spend all afternoon alone for at least 4 to 5 hours each afternoon.
In addition, what I receive each month from Social Security Survivor’s benefits, is, and always has been, barely enough to live on. Because of rising grocery prices and higher utility bills, I am scarcely scraping by.
My desktop computer, which I use for my disability rights activism, is now four years old, and it overheats a lot. My fear is if my PC breaks down, I will not have any way to replace it, and I need it to continue my work and to be able to maintain my connection to my disability community friends.
My mother and two caregivers are my only support, but none of them can help me the way I need to be helped.
I am so depressed that I cry almost every day. I am often sick due to anxiety and worry, and I rarely have a restful sleep at night. In addition, having to do in-center hemodialysis is literal sensory hell because some of the nurses and staff are not patient with me, nor do they respect my disability accommodation asks.
I want to move to the Northeastern US because I have researched it and would have nearby friends and many community supports that I cannot get here. I would also have better options for in-center dialysis.
I plan to use these funds to pay off some bills so I can fulfill my lifelong dream of living in that part of the United States.
My Go Fund Me is linked here.