F$@CK IT

I’m so over life it’s not funny.

I’ve had some good times since I last wrote on here.. but it always ends with me reaching some new rock bottom.
They try to say when you hit rock bottom the only way is up…
When you’re chronically ill and disabled – rock bottom has levels, you never know if it’s actually going to get better.

Every time I start to make a friend I hesitate – who wants to be friends with someone who literally spends her life in bed in the dark watching tv?
I mean real friends, that actually try for each other.
I have those friends, but they always outgrow me. For the decade i’ve been fighting my body I’ve just watched people grow past me.
I don’t know how to talk to people.

Romatic relationships are even worse –
You think obviously to not let all the bad stuff out at once. When you don’t have much control over your body that makes it hard. You act like you’re okay, you push yourself to seem normal.. then you crash.
When you crash the person you’re dating doesn’t know what to do. Nor did they really sign up for that..
So you try being totally open and honest. If they can’t handle my bad shit they don’t get my good shit right? Turns out preparing for the worst can sometimes cause the worst to happen..
So you try to find a happy medium. You even find a person who has their own physical and mental health issues – Well this might actually be meant to be! They asked about my issues but we also talk about other stuff. I’m trying so hard to always include a positive when there’s a negative. Their room is upstairs? Well i’ll just climb the stairs like a dog! They move 2.5 hours away to help their mental health and I stick around and even visit.
Then I got dumped because of my health issues, because i’m “so negative”, I can’t drop everything and drive 2.5 hrs whenever…

Relationships only work if they’re about bullshit. No matter what, once my conditions get in the way/affect anything/show up, my relationships start ending. Even when I’m doing everything right, trying to be positive, not focusing on anxiety, trying to stay chill and not freak out that they don’t like me anymore.. the end is inevitable.

I’m so over trying.. but I’m not giving up. I’m just not going to push myself into crash mode or push to do things I can’t for people who don’t even appreciate it. I just don’t understand how to do this. I can’t change or control the fact that I can’t walk unassisted, that my parents help me or that I have no life. I’m working on things obviously.. but chronic illness and disability don’t make that possible in all aspects of my life.

I will always be more of a commitment and more of a responsibility in relationships.. how do you date when it’s like that? Sometimes you find the rare person that says yea I can be that person for you! But in my case they realize sooner or later that they deserve better and/or they can’t handle the “responsibility” and extra stuff that comes with me.

My ex fell for the 29 year old funny girl sitting in the booth next to him, not the anxious 29 year old who lives with parents that have a say in her life and can’t drive very far.. that’s the most interesting way I’ve been told it’s over because of my condition. He’s very good with words..

You can’t get into a relationship with someone fighting a chronic illness or living with a disability and think it’s going to be anything like any relationship you’ve ever had. The hard times are different, the good times are different. Everything is different. I’m done feeling like it’s my fault or that my conditions are a red flag. I have emotional and mental breakdowns, panic attacks, I use oxygen, I hurt constantly, my legs jerk, and I don’t leave my bed often but I’m a great person who cares more than most and will always be there for you in any way I can at the drop of a hat.

Look past the symptoms, realize what are symptoms, work on what you can control but just like in AA have the strength to realize what can’t be changed and still live.

And that’s my venting on chronic illness and relationships.

Possible New Diagnosis..

Dystonia is not an enchanted land. It’s a movement disorder.

I had been to my neurologist about my having no balance and not being able to walk due to the jerking in my knees.. She wanted me to re-start gabapentin (I’ve never noticed it helping like that before..) and physical therapy. That’s literally all she was going to do.. I knew there was more too it.

Since I do have mold toxicity I decided to go to a functional neurologist/chiropractor. She gave me the longest neural exam I’ve ever had! She did tests and made symptoms happen I didn’t even know about. There have been jerks and twitches over my entire body, it’s affected my quality of life, it’s affected every part of my life. I just thought I was too tuned into my body. It turns out I might not be crazy.

My brain has a disorder that mixes the signals and pathways in my brain. When you move your index finger, only that one part of your brain should light up.
(This is sad I know but it’s a good explanation) Drs used monkeys to realize we can fix the mixed signals and retrain the brain – The index finger of the monkey is removed. Eventually when the thumb or other finger moving will light up the part of the brain the index finger used to signal. Retraining the brain to not need the missing finger. When the finger is re-attached eventually it starts lighting up it’s own section again. My brain is constantly reacting which causes my body to constantly react. When I move my finger other places in my brain light up. Writing a letter (which is pretty much impossible) causes my legs to contract for example. I always feel like I’m falling, my brain doesn’t know where my feet are or really where my body is in terms of the ground. This is why I get vertigo when i’m walking and have no balance due to extra pressure in my brain caused by the inflammation in my brain and the dystonia impact.

Right now as I’m typing this there is a twitch moving up and down my legs and they are clenched. My muscles are constantly clenching when they shouldn’t be. This causes exhaustion, pain, brain fog, inability to walk unassisted, inability to get a sentence out, stuttering, Blepharospasm (uncontrollable blinking as the muscles around my eyes contract), slow eye tracking, stuttering in fine motor skills, and jerking is now in my arms, face, neck, abdomen, and head in addition to my legs. The leg jerking alone was debilitating and has caused me to start using a power chair as i’m too weak to push myself. The jerking and movements in the other parts of my body are life altering.. at this time I can still drive short distances but at night my eyes get affected by the lights and extra blinking starts which makes me nervous which makes my arms start to jerk.. I’m really struggling and have to wait until Nov 10 to go to a movement disorder center to make my diagnosis official and hopefully start some meds to control my body.

I’m trying to decide whether it’s time to go to the Cleveland Clinic.. has anyone who read this far gone to that clinic? I’ve also been told to go to Mayo. But I don’t know how to make that decision.. I wish I had gone to this neuro chiropractor Dr. Brindisi months ago.. but I thought I was taking a break but things got too bad again. I planned to travel on thanksgiving and attend a show of my favorite band Our Last Night but now i’m worried the movement disorder center may not give me help in time.. it’s hard to balance taking care of my psyche and having fun with treatment..

I’ll post about the mold soon, it’s something i’m still unsure about. If you have had experience with mold please check back. Mold is so confusing.