Running on Fumes

 I'm running on fumes. The fumes of fumes. 

And it is terrifying. 

I tried taking an immune suppression ive had in the past. I don't know if it is making me sicker, but I am not taking it tonight. Not after the week I have had. 

I have to go lay down every few hours. 

And I am absolutely terrified. 

Of what? 

Being trapped again. 

Because then you are classified. I've been treated like dirt while chronically ill. I've been made to feel like a leech, a burden. 

I am desperate to work, to have a career, to go to school, to be alive. 

Please. Please.  

In Bed

 I've spent most of today in bed, buried in brain fog. Like I can't track the conversations happening around me. 

My family is getting rid of Dad's equipment and things, which is tough. But that means a whole ton of people are here, talking. I don't know what they are talking about. 

I fought hard to do math today for my BSN. I am beginning to feel like that might turn out to be a waste of money. I couldn't think straight to understand it. I can't feature doing my fieldwork project of following a BSN or above around. I've got nothing left. 

I've been here before. I have done all I can on my end. Now I just have to wait until this stops. Until the swelling, pain, crushing fatigue, nausea and brain fog goes away. There is no magic pill or supplement. I take so many things I rattle. 

And I feel so alone. So desperately alone. I hate living like this. I hate being useless, having no impact on the world about me, having no work to speak of. I've said I am not available for the time being so at least I am not calling out. 

I just want to work. I want to work and go to school. 

Be Less.

 We are selling off Dad. Not really, but it feels like losing him all over again. 

It's been...gosh...four years this Summer since Dad was killed in that accident. 

We changed nothing at first. Everyone wanted us to get rid of his equipment, cars, trucks, tractors...they wanted us to get rid of him.

My father was in those items, somehow. They were the last vestiges of him, you saw them, you saw him. 

I still half expected him to pop his head out from under the hood of a red Ford f-250. Or to be fiddling around with the D8 caterpillars. I expect to smell the scent of ozone from welding, hear the squealing moan of a metal grinder, and the low whirring of the CNC machine.

I don't think others see it that way. Mu sisters have been off the property too long. But for my mother and me, it is seeing him die all over again. It is losing him all over again. Especially the items he loved the most. His D8 cats.

And I'm supposed to be the strong one. Again. Everyone expects me to be the strong one. I don't even know when that mantle was passed to me, but it was.   

My health is suffering. My reader will say, oh, it is just this time. The loss resurfacing. Ah, but this has only happened this week...my health has been not great going on 3 weeks. 

No, my body is rebelling against something. I'm working on my BSN but struggling to work at my job. At least I am per diem, so...terrified of losing my job, but it is partially an availability sort of position. I'd rather say I am unavailable than call out sick. If I take this week off...maybe I will be better next week. I don't know. 

I don't feel well. I am so tired. I can't feature walking to the end of my driveway. I make myself go upstairs and downstairs multiple times a day for no reason other than exercise. I'm trying. 

I don't know. I've tried all I can for now, my only option now is waiting. I'm up on aziothioprine (immune suppression) and I am taking my MCAS meds more religiously, even the supplements that are supposed to help MCAS. My pain is up, my fatigue is up. I look terrible. But they say my iron is normal now. I cried. The last time I had an iron infusion, I felt so much better about a week later, and then it was a slow, steady decline again.

I've had a root canal, to see if the tooth that was always sore and achy had been making me sick. That's only a week out, though, or not even actually. I don't recall how long infected teeth took to improve my health. I have less post nasal drip, and since I am convinced that my upper teeth all drain out my sinuses, maybe that's a good thing. 

I'm scared guys. I'm scared that I will lose my ability again. At least the nausea is less, but the pain and the fatigue...and the brain fog...is just killing me. I'm so disappointed, discouraged, destroyed. 

Go get counseling, they say. Yeah. I did that. Spent 6 months being told I should give up and get back on disability. I'm not sure how that was helpful or supportive. I don't know that I can ever face counseling again. Plus, the counselor didn't deal with crying. So, having already been told to not cry, and now being told not to cry at the counselor's office, I am left being certain that I am nothing but a burden on others. 

I don't want to be. I spend most of my time trying to not share thoughts, feelings, emotions. I try to be less. I truly do. I get tired of being told to share my thoughts, emotions, feelings...and then, when I finally trust enough to do so, I get told to not. Go be less. 

I try to be less. I've tried my whole life to be less. I'm never less enough. I just want to be me and for that to be ok, but it isn't ok. I end up being too much for people. Too much health stuff, too much anxiety, too much depression, too much distress. Too much...me. 

I wish people knew what I have face and lived through. You over explain again and again because you try to make your reactions make sense to others, and it just annoys them worse than if you said nothing at all---and had the odd behavior.

Silence is safer. Silence and less. That's how I ended up in such an abusive marriage. I was told to be silent. Be quiet, and try harder. If you are having problems in your marriage, it is your fault. Be more for your husband. Be less you. 

Be less. That's still the message I get. Be everything and be less. And certainly don't be you. Go get counseling. Go get drugs. Go be someone else. 

Pain, Physical, Mental

My joint pain is through the roof. I'm lying in bed with tears running down my cheeks and into my ears. It hurts to fold my elbows to hold my cell phone to type this. My knees hurt. My hips hurt. Feet. Hands. I hope I've got an infected tooth, which also hurts, because of that isn't it, there is no answer. It's back and won't be leaving until it decides, since I've used every psoriatic arthritis drug known to mankind without any change. 

I could have this again for an unknown length of time. A day. A month. A year. A decade. 

I've sobbed alone in the dark. 

I feel like I have to now. 

I got lead astray this year. Fool that I was. People seemed to want to know more about me, what I was facing. So I opened up further, cried more than I have in a decade. Let it be seen, the depths of the wounds. 

I got told I was an emotional desert. I think they meant flood, because desert doesn't make sense. 

I replied, I don't have to cry. 

So I won't. Never again around those people. Because what I thought was there...was not. 

Be less. That is what I am told over and over again. Be less. 

I haven't cried in so long. I couldn't cry around my ex at all. And then if I cried it made me sick. I didn't cry about Dad's death because I couldn't. 

And then get counseling, everyone said. So I did that...and spent six months being torn down and told to give up on life. Talk about adding more to the medical PTSD. I never want to do counseling again. 

And I wasn't allowed to cry then, either. 

So I cry alone in the dark. 

Be less. Because no one likes you if you are you. 

Dancing with the Devil

 I spend my life trying. 

I've spent my life trying for so long, I don't even remember what it was like to not push, push, push. Push until collapse is perhaps now my goal, without my knowing it. 

I've never felt like I was enough. Or as Elyse Myers says---I love her--- I was always too much. 

I was too rigid, judgemental. Too emotional,  too embarrassing, too tense, too...much. 

Just shut up, Erika. Stay away, Erika. No one wants you, Erika. 

People stopped playing games or doing something when I walked into a room as a kid. They'd switch off the TV and scatter, leaving each other rather than have me involved. 

I changed. I dropped my belief systems slowly, one after the other. I became quieter, without managing, still, to be quiet enough.

 I learned to modulate my voice so that the empathy I truly, 10000% feel to my soul, could be heard. I learned to watch people and actively listen, all while they did not hear my silent screams. 

I learned to ask for the rules constantly, because they changed all the time at my expense. It was a cruel joke to dump water on me, changing the rules of a social event, game or what have you. 

What was acceptable from some people was idiotic, stupid or annoying from me. I especially did not understand YoungLife games, which were silly at best, yet were deeply enjoyed by the other teens. I knew and know from experience, had I suggested the same thing, it would have been met with disdain. 

Be perfect, Erika. Know the room, Erika. 

I learned how to be funny, charming. I learned how to mould myself into whatever every crowd needed me to be...smothering the real me. 

I leaned how to bury myself in learning to crush the pain of life. If my head was full of research, the tears, pain and sorrow of never being enough could not escape me. 

Because no one wanted to hear my pain anyway. Mostly I was told to shut up...whether actually or based on the body language I am so extremely sensitive to. I see the eyes roll, the hidden sigh. Here she goes again. I don't want to hear it again. 

I'm still not quiet enough. 

"Go find less." Elyse Myers says. "If I am too much, go find less."

Maybe if I hadn't been someone like I am, someone who wanted to be liked.....my gosh, loved...maybe I wouldn't have married the man I did. I was so afraid of being alone. 

There's worse than being alone. There really is. But I'm still afraid of being alone. 

I can't begin to tell you the terror that fills my soul when I get sicker. When the flare ups last longer, when weakness hits, when all I can do is focus on college, and there is no strength left for hospice work, no strength left to see my loving, sweet, gentle boyfriend. Or worse...what if, having paid for school, it all comes to naught? I get my BSN, and still can't get a part time job that is remote and lets me rest more? What if I end up as sick as I have been in the past? 

Alone. Again. All the time..

I lay in my bed, now, unable to sleep because my ulcer is bad from NSAIDs due to my pain. I've stopped the NSAIDs, doing carafate, famotidine. I'm waiting for pain specialists, because I lost my beloved PCP. 

But I cry not from that but from the terror of being alone. 

I've watched hospice patients in facilities that died....all alone. They had a guardianship, or a state worker, no friends, no family. 

No one even noticed them. 

I don't want to be that person. But I feel so alone. And I feel like I am too much. 

Go get counseling, Erika. That's what people say. 

So I hired a counselor, who, for 6 months, tore me down. I finally stopped, spoke to my psychiatrist, who did not agree with any of the assessments of the counselor. 

But now I add that medical trauma to my long list of medical traumas, and I don't want to do counseling anymore. Ever again. It was truly a horrible experience I wouldn't wish on my worst enemy. 

I should return to writing, blogging, journaling. That's when I find out more about myself than any other time. 

I've got people I am myself around. And I'm more myself now than I have ever been. 

But it's that keep trying until I drop, and the "be quiet, Erika, you are too much" that is burning my soul to the ground. 

Can't anyone just say "I see you, I know you, I'm proud of you"? instead of adding to the tear down?

 Do people really think I don't try my bloody hardest?

 I go places all the time about to vomit. I hurt all the time. I'm so tired I can hardly stand. My gosh, what do I have to do to be enough? 

I think I could be a published author, best selling, and people would come out of the woodwork claiming to have been all these things. 

Where were you when I was looking up doctor assisted suicide? When I was asking my doctors for hospice? 

For all that, I am still going quieter. At least in places. There are people I talk to, and depend on deeply. My boyfriend. My mother. My fellow spoonies. 

But I feel lost, wounded. Lying in the middle of a glass shard covered road, bleeding...and no one even sees me. 

Afraid to Sleep

 I'm afraid to go to sleep anymore. 

I've always had trouble sleeping, since earliest childhood memories. It is hard to get to sleep. It takes 1-4 hours to get to sleep. 

I hate silence. My house is one that is especially silent, unless you hear the wind wuthering about, which, with the trees as tall as they are now, you rarely hear anymore. 

They say it is telling of childhood trauma. What isn't? Everything is a childhood trauma these days, and, being one that figures herself littered with childhood trauma like so many free stickers handed out at every child education event...add on another, baby. 

Silence is hated. I used to know the cycle of the refrigerator and the heat pump. How long they would run. It was a blessing if the hour long refrigerator run timed with another hour long run of the heat pump. Heaven help you if you didn't fall asleep in that two hour span....because it was followed by two hours of dead silence. 

I don't need much noise. In fact, too much is as disturbing to sleep as too little. 

I have slept with the TV on for decades now. Low, so dark you cannot see the actors, on repeat; I have burned through my Laverne and Shirley DVDs, and have had to buy replacements. I actually kind of hate the show now, but it is the only guaranteed show for night time sleeping. 

During my marriage, I began to have nightmares. I began to wake up, sitting bolt upright, fighting the blankets, and taking the breath to scream. 

I cannot begin to tell you the reasons for those screams. 

But now, it is worse. 

Now I wake up crying. Sobbing. 

And first I have to escape the nightmares to wake up, and escape them enough to move. I think I am dealing with sleep paralysis, meaning I wake up during a part of sleep that holds you still to protect your body. You aren't supposed to become cognizant before the paralysis wears off. 

I am. And I can't move. Terrified of the nightmare, unable to move, fighting to move a finger, then my arm...if I can just please move enough to turn on a light. 

And then I will have tears streaming down my face and into my ears. Sobs escaping me. 

Get counseling, everyone said. 

Six months later, I fired my counselor. She said once she couldn't deal with grief or crying people. So I stopped being upset in counseling, and thus halted any sort of movement in any direction. So I'm a bit burned by counseling and I am back to coping on my own, burned and scalded, crawling over broken glass. 

I am on various medications to attempt to help with sleep. I am on medications to help with no iron in my bone marrow. I am supposed to be on meds for autoimmune diseases. I am still trying to find out what happened with that. Ehlers-Danlos...braces. 

I've spent my whole life not being good enough. And while I stand on my own two feet more than I ever did, thanks to a divorce, those hauntings and ghosts won't leave me alone: Try harder. You aren't wanted here. You aren't cool enough. You aren't fun enough. Don't talk. 

That crushed me to near oblivion all those years ago. And very few people even know that. I'm not sure how many cared at the time, either. 

I just want someone to say they are proud of me. I want someone to say "good job, my girl," rather than either belittling me for getting off of disability or telling me I could have it worse or telling me to buck up and shut up. 

I want someone to honestly say they are proud of me, and give no other statements, no "but" added on. 

I just want someone to say "Well done, my good and faithful servant."