My brain feels like scrambled eggs.
I feel an intense fatigue today, it's almost impossible to type my arms feel heavy and leaden.
My chest feels burned raw on the inside.
I want to go away. This can't be living.
I overexerted again.... meaning I went to the Apple store to try to get a new phone up and running. Amidst "normal" people I felt more alone than ever. I sat there trying to be patient with the akathisia mounting inside of me.
My body broke out in what felt like bee stings all over. I burned. I sighed deeply... can't anyone see this torture?
Finally it was time to leave, mission accomplished but I was uncertain if I could walk across the mall to my car, breathing heavily, a mixture of fatigue, panic, feeling like I was on meth and heroin and LSD at the same time.
I managed to make it to my car.
That was days ago.
It left me depressed and hopeless.
How far I have to go, it doesn't seem possible.
My bladder aches, physical terror comes and goes, the fatigue takes hold and usually I welcome it.
But I have things to do. Life to live.
This might be it. I just don't know.
I must accept this existence. That each moment feels so incredibly uncomfortable.
My brain burns. I mean it. It does.
I have been trying to get immunological testing done now for over 3 weeks. I can't seem to manage it. I had to be at the lab by 10am and it took me a total of 3 weeks to do that.
I'm not a lazy person.
I know it sounds like it for anyone reading this blog. Any outsiders would see me as lazy.
What do you do all day they say.
Don't you get bored they say.
It's all in your head they say.
If you just push yourself the brain will follow they say
You sound so energetic on the phone they say.
You look so normal they say.
When I hang up the phone, I take to my bed. To my bath. To my sanctuary. Away from life, living it on the sidelines for now.
Here I am 61 days off benzos. Two other tapers to go. Every time I get excited, even a little nervous BANG. WHAM. Terror.
I'm feeling it now.
It was from an innocuous email.
Why does everything cause so much fear in my CNS.
I had a rough beginning to the day.
My bladder has hurt SO badly that I was convinced it was a UTI. I mean I was doubled over, crying. But NO. It's my IC flaring BADLY or muscles or nerves misfiring. I have been sitting with a heating pad on my area for DAYS. It's so relentless and boring.
Today I managed to wash my sheets, drive my kid to a play date, buy donuts (NOOO not for me) and do more laundry. I dyed my own hair. I did my own nails. Just because.
Because if I don't do these things, I no longer feel like I even resemble myself. I want to feel that ease in my body. I look at others and envy their ease. Envy that at the end of the night they can kick back with a glass of wine, some good sex and RELAX. Ohhh one can dream.
It was hot today. The beginning of summer and it felt like 90 degrees, dry and delicious.
I dream of summer holidays, of lying around the pool baking in the sun. I can almost convince myself when I am having a window that I will feel that comfort again until BAM...... I get a shock of terror as I have just gotten minutes ago. And my nerves inside feel burned. Burned so badly.
Then I just wonder HOW HOW HOW long will this take. Is it possible to even heal? I'm told it is.
Can I in fact heal on Gabapentin?
That remains yet to be seen. I have no choice though. I can't pace 18 hours a day. I can't, I just cannot. This has been relentless torture for so long, the thought of years ahead well, I just have to stay in the moment don't I.
I haven't seen my kids in over a week. They were sick, and I was petrified to have to take an antibiotic. Petrified if I will ever need any meds again. But I can't live in a bubble. This PTSD is enormous.
I'm getting lots of immunological testing done--mast cell activation and other markers. My immunologist was impressive. He believed my history with parasites. Interstitial cystitis, allergies all have a connection in the IGE portion of the immune system. I don't know what this means, but I hope there are answers to the layers upon layers of healing that needs to be done in order for me to rebuild my life again. I covet HEALTH. I covet a normal person's CNS. I think I have said that before because it is true today and every day from the minute I wake up until the minute I am finally allowed sleep with the jackhammer going off in my brain.
So right now, after a window day I am sitting here with enormous head pressure and terror. My inside feels singed. The funny thing about a wave is that when it occurs, the window feels lost entirely like it never existed. I guess this is what is called the negativity bias.
I want to live again.
Someone who found themselves accidentally dependent and suffered an iatrogenic injury from medications that were prescribed. Sharing experience, strength and hope with others. This is written as a person on this winding path and NOT as a professional. Please contact a licensed professional for any medical/psychological care or advice. This is NOT a substitute for medical or psychological care. What is written here reflects my own personal experience ONLY.