Too much pain

[KuriGohan&Kamehameha]

Lately, I feel too tired to even write on SS. Many people have sent me kind messages, yet I am so deep in a haze of fatigue I do not know how to respond. Others here have made very heartfelt, interesting, or amusing posts I wanted to reply to but my mind is just... empty.

I am too tired to continue playing this rigged game. The idea that some people suffer endlessly (in the absence of imminent mortality) with no cures, treatments, or bandaids is a foreign concept in the current paradigm of mental and physical "wellness."

Yesterday I sat at the side of the road in the dark for well over an hour, with my legs folded under me, in the mud and grass and dirt with the cold wind whipping at me, because I was so out of it I got on the wrong bus. My boyfriend called one taxi service, the line was busy, so he gave up. He blamed me and told me to do it myself but my phone was on its last legs, and all of my ridesharing apps said there were no drivers avaliable. I was stranded miles from any blocks of flats, houses, or businesses.

I have raynaud's phenomenon so my hands started turning purple from the cold. I was hurting so badly from going out earlier in the first place. I just wanted to go home, and I was blamed for my brain fog, my inability to decipher information and remember numbers and times. My boyfriend refused to ask any of his family members for help, nor did he try any other taxi services. He told me I could shut up, listen to him, and wait for a bus to hopefully come, else I'd be sleeping in the dirt. Oh sure I am waiting for a bus all right, just not the one he thinks.

People are simply cruel and ruthless. I have no energy for this anymore. My cfs seems to progress further and further, damaging any capacity for normal functioning I have left. No one believes how bad it is.

I have developed worse symptoms such as random facial tremors and other twitches across my body, overactive bladder, and unexplained weight loss (I'm already quite thin as it is) which has wasted away all the fat around the bottom of my spine, causing my tailbone to protrude since it has lost all cushioning. Now even sitting down and laying on my back have become painful endeavours. My partner is having to pay for a private MRI so I can be tested for multiple sclerosis. I am scared shitless to walk into a hospital, carrying all my trauma on my sleeve.

My responsibilities are about to increase tenfold once I am forced to return to university. There is no mercy for the disabled and the struggling. My mental capacities are further dwindling, only for my cries for help to be silenced and drowned out by hotline numbers and suggestions to talk to mental health teams. Can the mental health teams reverse the damage that's being done to my brain by a physical illness ravaging it at every waking moment? No they cannot.

There is no real help out there for someone like me. Not a soul in this ghoulish individualistic for profit linkedin core dystopic system takes CFS and comorbid conditions seriously. Even the CFS groups online ban all suicide talk, and you'll frequently be met with the same tired toughen up, spiritualistic new age nonsense, build relisience, yank your bootstraps into submission rhetoric. The only person who cares about me it seems is my best friend and even he begs me not to die, validating that yes things are horrible, but that I must hold out.

I am in too much pain to write any more. Too much pain. My legs are aching. I can't see. My tmj is messing with my ears again and they can't drain wax and fluids, I've gone partially deaf again and have been applying drops for well over a week now to no avail. I am in misery. I can't read, write, go out with friends, laugh, play games, or do anything remotely worthwhile because of this HORRIBLE PAIN. I want it to end, please. I NEED to die. I am going insane.

The rare occasions where I do end up going out I am too exhausted to conjure up pleasant conversations. I usually sit in silence and try to fake a modicum of enthusiasm and energy, all while my vision is distorted, my muscles are aching with hell fire, and I'm usually battling both fever and Raynaud's. I cannot keep up this macabre clown act, it is simply not tenable

I am losing it. I just want to rest. I want to go to sleep. I can't do it anymore.

 

[Tomoko]

My heart is broken for you friend. I don't know what to say, but just leaving this reply here so you know someone is reading and acknowledging you. I really hope that you can find happiness in the end regardless of what the future holds for you. Good luck with whatever you choose to do next.

 

[BeansOfRequirement]

Holy shit, no words.

 

[FuneralCry]

Life really is so unfair, I'm sorry you are suffering so much. The human body can be a prison and is capable of torturing us. Only those who experience it themselves will be able to understand what it is like and to everyone else it is just invisible. I understand the fact that it is hard to carry on in a hopeless situation. I wish you well.

 

[Callie Arcale]

No one believes how bad it is.

I believe you… I wish I didn't know what you mean, but I do. ME/CFS takes everything and leaves us with nothing. We are alive and dead at the same time.

Professor Ron Davies at Standford, whose son has very severe ME/CFS, and who is currently researching the metabolic trap in yeast, once said that living with this disease is like the last 24 hours a very ill person experiences before they die. Only for ME/CFS patients those 24 hours last for years and years.

I think that sums it all up pretty well, don't you think?

Even the CFS groups online ban all suicide talk,

Yes, I know that. The irony is too much! It's all right to post photos of peeing buckets, feeding tubes and ghostly looking faces, but the moment you imply you can't deal with this ordeal, and just want to end it, you get a warning. Because we "must" suffer, we must endure and we must let the show go on at all costs.

I just wanted to go home, and I was blamed for my brain fog, my inability to decipher information and remember numbers and times.

I know you know this, but I'll say it nonetheless: It is not your fault that you are ill, it is not within your power to control brain fog or make it go away. I could tell you some stories about brain fog that will make you cry/laugh … like the time I went out without shoes, or the time I put my mobile in the soup. Brain fog is real and it is caused by inflammation in our brains, so please don't believe your bf when he says it's your fault. It is not.

 

[Midgardsorm]

Yesterday I sat at the side of the road in the dark for well over an hour, with my legs folded under me, in the mud and grass and dirt with the cold wind whipping at me

Kuri, please ... I just cried really hard.
I want to be Goku and fly to you just to carry you home.

This is too much. I understand how it is suffer without anyone believing in you. I am, right now, because of my breathlessness and other things.

But you have it even worse. What is happening is simply inconceivable.

It will end, you will be in peace, no pain, no torment anymore.
I usually write for people to try recovery, but since the current state of medicine does not know how to treat CFS...

I just want you to be well. No matter what it takes.

May people let you have a good night sleep, at least.

The day for your pain to end is getting closer.

Oh and just for the record. Give me the choice of believing in you or Odin. I'll choose you.

 

[Alwaysbadtime]

Your bf sounds like a mean dickhead. One way to look at it is when/if you exit you don't have to feel guilty about leaving him and all his bullshit.

You must be on the other part of the world. It's hot as fuck in August where I am.

I can't imagine dealing with health issues. I relate to most of what you talk about aside from the health problems. It fucking sucks. I agree about being silent socially. It's the fucking pits.

That sucks that health groups with your illness don't let people talk about suicide.