Saturday, September 21, 2013

A Taste of Winter

It's a cool, gray rainy day. If I had a sense of home it might be cozy. Unfortunately the sense of home is lacking for reasons I'll get to later.

I'm getting a glimpse of what Winter will be like here. It's grim. I do not want to be here for Winter. I'm quite worried about it. I do not want to be stuck in this toxic room with gray skies and low cloud layers with a housemate who decides to stop speaking to me rather than communicate when I do something he doesn't agree with. It's painful when it happens because I'm wanting more connections with people. I'm actively looking for other places to live but keep running into the same damn problem. People don't want to live with someone who is home most of the time. I'm going to post an ad on craigslist so I can spell everything out and not have to go through the process of explaining everything.

I have stuff from the apartment that had the bad mold so as I lay here I'm being re-exposed to toxins. I can't go outside (which has been my escape) because of the rain. I don't have rain shoes.  The muscle weakness is back at times today though not as anywhere near as bad as when I lived in that apartment.

I'm experiencing depression. Out of nowhere. I've been trying to get a support system and other things in place before Winter gets here. Not only that but I'm worried about going through the Holidays alone again.

I have a difficult living situation. One of my housemates stopped talking to me for 3 days because I asked if I could have at least a little space in the freezer (I had none before and only a small space in the refrigerator). Then he stopped talking to me for 2 days because I removed an air freshener plug-in that was causing headaches and nausea every time I went downstairs.

I misjudged a friendship. What I thought was a friendship was not.  It feels bad to have misjudged this (plus it feels bad to not have the friendship that I thought was there).  It's been a blow to my self-esteem as I gradually and cautiously step back out into the world after being isolated for so long.

And there's the money issue. Hemingway (The Sun Also Rises) wrote in response to a question about bankruptcy:

“How did you go bankrupt?"
Two ways. Gradually, then suddenly."

I'm broke. I need to see a dentist because of tooth pain but because I have no dental insurance (could no longer afford it) I can't see a dentist. I've been gargling with warm salt water. Last time this happened I used both gargling and Argentyn 23 Colloidal Silver which worked. The only problem is that I don't have any. I should have been thinking ahead.

I need brakes for my toxic car.  I had 50-60% left over 1 year ago. I'm trying to make the ones I have last as long as I can but I'm having to push on the brake pedal harder than I used to.  There are lots of stoplights and stop signs around.

The reality is I need a different car. I'd like to have a cargo van so I convert it.

Last week I was invited to lunch and dinner but had to decline because of money. I was too embarrassed to tell them the real reason.

I could use a comforter.  It gets friggin cold in this room. Because of temperature regulation problems caused by a malfunctioning autonomic nervous system, when I get cold it takes a long time to get warm. My hands and feet get cold easily. My fingers get numb as a result. The tips of my fingers are numb right now. I need fingerless gloves or gloves I can wear and also type.

Mostly what I need is a way to make money so I can afford treatments. I'm supposed to start Immunovir but can't afford it.  I panic inside when I think of no longer being able to afford the treatments I'm currently on.

 I'm using my food budget to make partial payments on medical bills. I do not have money for food next week. Luckily I have some food I'd been saving in case this happened. I received some unexpected money (thank you C.R if you still read this). Forty dollars went for groceries last week. The rest will be put towards medical bills and rent. I'm so behind on medical bills and they keep coming in! Another arrived in the mail today.

I have to have a medical procedure redone on Monday. I'm as worried about the cost as I am about driving myself home in pain again. It really hurt last time. I'm hoping there won't be any heavy bleeding.

The money thing is frightening. If I knew I could work it would be different.  In order to work I need additional treatment in the hopes of boosting my functioning. It's a catch 22 because in order to improve my functioning I need more money. In order to get more money I need to work part-time. But I can't work because I'm still too sick.

I'm in therapy now and going to support meetings but I can't drive at night which limits things. I'm going through something unrelated to ME/CFS which is also complicating things. I wish I could talk about it but right now it's staying between 3 people: myself, my therapist, and my ex.  It involves a major, major life decision.

The last time I felt a sense of home was almost 2 years ago when we were living in the house we'd bought.

I don't know what's ahead. I've been fighting hard for a better quality of life.  I'd like it to be easier.

This too shall pass...

The world breaks everyone and afterward many are strong in the broken places. But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially. If you are none of these you can be sure it will kill you too but there will be no special hurry. Ernest HemingwayA Farewell to Arms, 1929

"What is home? My favorite definition is "a safe place," a place where one is free from attack, a place where one experiences secure relationships and affirmation. It's a place where people share and understand each other. Its relationships are nurturing. The people in it do not need to be perfect; instead, they need to be honest, loving, supportive, recognizing a common humanity that makes all of us vulnerable.”
― Gladys HuntHoney for a Child's Heart: The Imaginative Use of Books in Family Life


  1. well that is all just crap crap crap :(

    I can certainly see why you would be worried, stressed, depressed etc. You are right though it seems like the only way is to find a source of income, and that is a challenge even for well fully functioning people. All I can really offer is my support and positive thoughts for you. It sucks being on the other side of the planet sometimes.
    Love to you Terri. xo

  2. Have you also incorporated the other things that help calm down your nervous system? Like listening to classical music, being outside when you feel really anxious, the smell of lavender, daily mini mediation, humming. I incorporated a lot of these tricks into my daily routine. And I got rid of all the sugar, caffeine, chocolate and flour from my diet. Trying to keep anything that revs up my system out of my diet. Yes chronic fatigue is a biology disease, but the changes it does to your body can be helped by doing some psychological things like behavior modification. Because with the whacked out nervous system you have a lot of anxiety under the fatigue. Doing the STOP, STOP, STOP thing every time you have negative thoughts. Stopping the constant mental body checking which makes it a lot worse. Just saying you are doing everything you can with pills and medication, but are you also taking into effect the other things you can do that can help calm down the nervous system and work along with the meds? No way I have it as bad as you did. I have never been bed bound. At my worse three years ago I could get up, take a shower and then that was it. The rest of the day I could only sit and watch tv (which was often hard to follow with the mental fog I was in). I would ask the same question ten times in an hour not realizing I ever asked it. And walking down the hall to the bathroom seemed like an impossible task. I was wiped out just taking the shower and dressing. I didn’t start to truly see any improvement until I changed my diet and incorporated a lot of psychological tricks to calm my body down. I still have CF and no way I’m I close to 100 percent well yet. But my bad days are fewer and they don’t last as long. And very seldom am I so sick I have to spend the day laying in bed. I have days where I can actually cook some meals and work four hours on the computer (with lots of breaks) and do laundry. So I’m seeing improvement.
    Can you go back where you were when you felt the best? Can you stay with family, even if it’s not ideal, if it helps and can get you well enough you can work part time again it would be worth the sacrifice. You are in a impossible position and I’ve been following your blog and hoping that you find your way back to health from this debilitating disease.