Their is no fix #chronic illness #PTSD

I’ve tried in the last year to live. I’ve pushed my body and ignored the pain. I’m not on pain medication nor have I ever been on any. But I live in chronic pain. Whether it is from the muscle disease, or the trigeminal neuralgia, or the vulva dynia, or the seizures, I am in chronic pain. Certain pains I have pushed through. The Lyme disease pain in my joints that makes each key I type feel like my fingers are in a vice (no clue how to spell that), and now the Rocky Mountain Spotted fever pain where that tick bit me a month ago that feels like someone is sticking me with a needle right this moment, is very real. The bone pain from the osteoporosis, which I was told could not possibly be from that but maybe from my copper levels or iron levels being so high, doesn’t matter because my shin bones ache as do my toe joints and my hips. I am in pain.

None of those things worries me as much as the multiple chemical sensitivities. That is something that I go great lengths to avoid having a reaction from. Sometimes I get that and the PTSD with smells confused. I think while at the dentist, “ OK, I have covered the dentist chair with a sheet to avoid fabric softener or cologne,and premedicated with an antianxiety medication and an antihistamine so I will be sure no stress caused seizures,” but I forgot about the multiple chemical sensitivities. I KNOW I have this which is why our garage door has not been fixed, our house has not been painted, our back rooms have not been renovated. I know this because when my neighbor sprayed with pesticides in his yard and I unknowingly breathed it in while outside, I got very ill and had to be medically treated. I KNOW I have this so I take precautions, I avoid being in the car when it needs gas put in it, etc. While at the dentist though, for just that moment I forgot.

They were making dental impressions for my teeth and my nose started to drip. I started to drool. I thought nothing of it until my entire mouth started to burn and my tongue went numb. Fast forward and four hours later, a few blisters in my lips and the roof of my mouth feeling like it got burned by eating hot pizza, the incident had passed. It took lots of treatment, care of the dentists and lots of antihistamines.

The incident itself passed but…

It hasn’t though. That was a few days ago. I am still haunted by it. Terrified by it. Paralyzed by it. I wake up in a sweat and anxiety attack over it. BECAUSE the reality of my life is this…if my house burned down there would be not one “safe” place I could go. I was reminded of the severity of the chemical sensitivities at the dentist and now I remember and cannot forget. Every hotel room has plug ins and fragrance and cleaners and sheets that have fabric softener. When my husband was away and staying in hotel rooms it took weeks to get the smell out of his clothes and some of them I just threw away because it made my nose run to even be around them. I couldn’t even wash my clothes somewhere else because I don’t know one person who uses no fragrances in their washer and dryer. The laundry mat would be a death sentence as everyone before me would have left a residue of 3 month stay in smell. It reminds me that all of the things that NEED to be done in our house cannot be done because it would affect my health and I don’t even have a place to go for them TO be done. So I sit here knowing I have no place I could go because I am a prisoner due to this health condition.

This feeling is so vulnerable I don’t think anyone has any idea. Even writing this I wonder if anyone in the world would know what THIS, just THIS feels like. To be in pain, to have to push through it day after day, and to have this underlying chemical sensitivity which should or could be rather called “allergic reaction to todays world,” is just too much.

Today I had to get labs due to the latest tick bite that has left me in much more substantial pain. We need to see, how bad is the infection, are there more than one infection from this tick. Because ofcourse four years of treatment for the original diagnosis was NOT enough I just HAD to get another tick bite. I wore a mask so I didn’t pick up anyone else’s illness. I brought something to sit on so I didn’t pick up anyone elses lotions or perfumes. On the way home all I could think, due to my PTSD, was, “ I just need the water to be working and the electric to be working so I can shower anything off so I can get in bed and try and cope with the pain that will happen to my muscles.” I was thinking this because of the smell of perfume that got on my hand from the prescription given to me. I should just wear gloves when I’m out but…carrying a pad to sit on and wearing a mask probably freaks people out enough. If they only knew…

The world goes on. My husband has a job, a life, runs errands, comes home with the colognes of every man he encounters on him and that is just life. No amount of cognitive behavior therapy will fix that part of PTSD and if it did then my husband coming home every day for the last 22 years from his job would have fixed me.

I have unfixable things. I have untreatable things. I treat and cope with what I can. There is some of it though that is truly unbearable. It almost makes me miss the “numb years” when I was robotically going through life 25 years ago.

But here I am now. My fingers throbbing with my heartbeat after typing this, knowing it is 2am and won’t be able to fall asleep and that there are no answers to any of my health problems. There are no magical places with no chemicals and no fragrances. There are no safe places for me other than right here in my bed which is still filled with pain and suffering.

It’s why I post the pictures I do. It is my effort to still live. But I have to tell you, that is becoming increasingly difficult and life as of late has become increasingly unbearable.

Throw in the broken cars and the broken well and the broken septic tank drainfield and a sick child…I think back to the “friend” (wow I have used a lot of quotes in this) that told me that I wasn’t as sweet as I used to be all the time and that these diseases have made me angry and I think well no fucking shit! Throw in some, or rather an entire childhood of abuse, shit family, and yeah, I don’t actually mind being angry. I more mind how I feel at this moment, which is utterly defeated. And the knowledge that all the therapy in the world won’t fix this. I have no fix to any of this. Not one thing! Which leaves me vulnerable, helpless, and very very alone.

The stick pile of my will.

One of the biggest triggers for my PTSD is vulnerability. Having multiple chronic illnesses can bring that feeling about in one moment. Seizures are top of the list. Watching my body deteriorate with this muscle disease is another. Something as simple as dropping a dish and knowing there is no way I can pick up all the broken pieces can bring a flood of emotions.

I’ve worked my way up driving the car to 5 miles. The grocery store is 5 miles away. Once I get there I can’t walk though and I don’t have a lift on my car and the scooter’s at the store my arms don’t have the strength to drive.

I woke up thinking about this muscle disease diagnosis. The “rare” and the “prognosis” and the “atypical atrophy” and the only doctor working on my case giving up on me. I wondered, what if 11 years ago I had not had that muscle biopsy. What if I did not get this diagnosis. What if the diagnosis just sealed my fate and put into my head what was to come and I stopped trying?

During this pondering I looked outside and saw the neighbor had piled all of his branches from his yard (probably from my own trees) in front of my fence. He’d done it before and then burned the pile right under all the trees. I voiced that I really did not like a huge pile for animals to hide in right there. For whatever reason, and there are many, seeing that pile of sticks in front of my fence did SOMETHING. That something was the opposite of feeling vulnerable. I felt angry and I felt strong. My wheelchair can barely make it through the grass but I drove that sucker over there with my husband’s work gloves and work boots and I picked up those sticks and moved them into a pile on his property. I knew I’d have to tell my husband that when he got home he’d have to then do something with them because I could only drag them about 2 feet. This is something my body had not done in OHHH ELEVEN years! I work myself up doing small things in the house. Even the driving, it took me one year to get 5 miles in the car. My doctor told me the more I use my body the more I lose it.

I have to tell you, I was listening to Eminem. “You only get one shot. You better never let it go. Here i go.Feet fail me not.Do not miss your chance. You can do anything you set your mind to.” Yep, I listen to a wide variety of hard rock, christian rock, opera, country, and rap. I was listening to Lose Yourself lyrics. I was repeating his words. Then I started my own. I started saying out loud:

“This disease will not win.”

“They will not win”

“I can do this.”

“No one determines what this body can do but me.”

Each stick I said one sentence. ” I will win!” ” This disease will NOT stop me.” “No one gets to control this body anymore!” I kept going and going until I couldn’t move my arms anymore. I sat in my chair and yelled out “ I WIN!” At that moment, I won. It wasn’t about the neighbor or the sticks at all. One day I will thank him for those sticks!

It was about me determining my own fate. It was about me not letting other people dictate my future or my now. It was about the abusers, my family, the doctors, not determining my capabilities. My diagnosis should have been a guide to lead me not hinder me. If my body does fail then it will be because the disease did it, not because someone else determined my fate by their negative words.

In all reality no one knows what has caused this disease, what the mutation is, what the treatment would be, or what my future holds.

Each of those sticks represented a human being who tried to throw sticks and stones. With each stick I picked up and placed where it should have been I felt a dagger being pulled out of me. One dagger at a time. One stick at a time.

If everyone is going to give up on me and my ability, I cannot give up on myself.

Moving those sticks was me not giving up on myself.

When my husband came home he grabbed them all in one handful and burned them. I watched them burn thinking as the embers were flying into the air that I had just let go of just one more piece.

Having this diagnosis, at first was empowering, because it was an “ IN YOUR FACE” to everyone who said I was making it up. Then I thought, ” oh no, I’m never going to go to the beach again, or drive again, or live again.” Getting a diagnosis should move you forward. It should not stop your growth or process or journey. Knowledge and wisdom should lead to empowerment not vulnerability.

I gave up then.

I decided to not give up anymore.

If it does destroy my body, then at least I will have lived.

Getting the PTSD diagnosis was an epiphany and a revelation and an aha moment that put me in the right direction to heal. Getting the muscle disease diagnosis was like a death sentence.

I needed to move those sticks more for my mind than for my body. The absolute agony I am in a week later is well…pretty unbearable. Muscles and bones hurt that I didn’t even know existed. I am aware that I need balance. At that moment though, I just needed to beat the odds. And I did.

I want you to read this and be empowered. Know that your diagnosis may change your life, shift the focus, alter your ability, but it should not be a cement block tied to your ankle. I decided while being “disabled” to embrace what I CAN do. Being mindful. Being self aware. Practicing self love. Photography. And MORE.

Right now, as I write this I am listening to Pink sing Don’t give up.

I implore you, “Don’t give up.Please don’t give up.”

His pile…..

MY PILE!!!

I will move forward with my mindfulness pictures, my wheelchair walks, balancing my physical abilities and inabilities, and continue to work on coping with the abuse that caused the PTSD.

What is your stick pile?

Who is in it?

What do they represent?

Abusers?

Abandonment?

Anger?

Burn those sticks even if only metaphorically.

I leave you with Rachel platten lyrics that I am listening to now as I finish writing…

“I will scream them loud tonight

Can you hear my voice this time

This is my fight song

Take back my life song

And i dont really care if nobody else believes cause i

Ve still got a lot of fight left in me

Take back my life song”

Today’s mindful wheelchair walk

Today I woke up with still the after affects of the chemicals I was exposed to. My heart rate was in the 150’s

BUT I was determined to get up and go out and go for a mindful wheelchair walk and let me show you what I found. First there was a rock fence that had fern growing out of the top of it and I found it beautiful .

Then I made it to the prairie and the grasses were all this dull color EXCEPT this one clump that had an orange/red hue

Then I looked up and right above me were a few squirrels eating the buds off of this tree with no leaves. They were so adorable. I made a full conversation for them: 1. Susan! I did 10 pull ups did you watch me? 2. No Thomas I was busy storing food for the babies . 1. Well I am OBVIOUSLY nursing the babies and I am storing up food too but also doing some pull ups. Gotta keep strong to keep up with those 10!

Yeah. I stopped there. But it was entertaining thinking about them and watching them.

There is a tiny dirt road that I SO should not go down in a wheelchair with the potholes but as I was leaving I noticed the sky was turning purple. The birds were flying over.

One side of the prairie is ALWAYS pink and purple and the other always yellows and oranges

I turned down the little dirt road to see the purples that were forming. I immediately saw a tree that I wanted to get the sky behind and I was SOOO mindful. I was so focused on that sky and that tree that I did not know a donkey had wandered up until he put his mouth on my arm. This was one of THOSE donkey’s I was warned about was a biter. I asked him if he was going to bite me. He did the funniest things with his lips. He showed me his teeth. He puckered up, he did the fish face. I mean this guy was a character. I had one carrot left from feeding Arnold the pig and I put it on the fence post. He tried sooo hard to get it and couldn’t so I finally handed it to him and he slurped it up with his lips teeth nowhere near me. I was still adequately reprimanded by my husband and daughter for knowingly getting near a “biter” but I was careful, except when I wasn’t and was mindful. Oops. So here he is. Now he is blurry as all get out because i had my zoom lens and he was literally right there in my face! But I will post them anyway so you can see how cute he was.

And last but not least was that tree and the purple sky. All worth it.

It took away my anxiety for a short period of time. Any amount of time not having anxiety is a blessing.

Goats and birds and sunsets

I had quite the bout of trigeminal neuralgia which does not appear to be gone this morning even after I applied lidocaine patches to the entire area. It is extreme nerve pain that comes out of nowhere shooting up my neck and into three areas of my face.

I forget how I look sometimes going out and will be in my puffy hat or my husband’s 30 year old sweat suit he wore after swim lessons or patches all over my face. The funny thing is that the people I run into when I am out looking photographing or petting the animals never say a word. Then I get home and think…how cool they said nothing about THIS! My daughter took a picture of me in the hallway wearing her hello kitty pants and a sweatshirt that I honestly forgot I was wearing when I went around the block in my wheelchair. I took the photo of myself in the mirror wearing my husbands all blue suit. And this hat! I really do need something more colorful!!! I get cold though so I just pile on the clothes, toss on the pain patches and go!

Fortunately there are others that just don’t mind what I am wearing and just let me be warm. My neighbors have become used to my attire and I guess so have the farm owners now which is pretty cool.

So below, for your entertainment is the forget how I look side of me.

Above are the pictures I took last night. I was given the gate code to visit the baby goats and I was thrilled. They were so very precious. On the way back I met my friend on the prairie for a few minute chat and I photographed a loggerhead shrike bird which I learned kills is food on the barbed wire and comes and eats it later. I was pretty shocked about that! I may have to find another bird to photograph now. I may perhaps be done with this cute little vicious guy. Either way it is fun to o out and see what I can see through the lens. It did take my mind off the pain for a little while.

Poetry/story

I always thought overture should play at the end

Like an ovation,

Standing!

The applause!

The bows!

While watching the crowd.

Like a petticoat

You’d think

Would be worn

Over the dress.

Coat

Right?

How misleading.

Not underneath.

The names they used

“Get your petticoat Bethany”

As pretentious as they seemed.

But

The layers

I’d retrieve

One

Two

Three

I loved the pinafore

On top

Pressed

And taken from the cedar

Chest

Packed

With the quilt my great grandmother made

The smell

30 years

Has always stayed

Still in my closet it remains

With a kerchief on my head

And make up on my young face

I beat on the drum

Unnoticed

Backstage

Before the overture played

The men wore painted lips

And long white wigs

I watched them

And the women they kissed

Not that of my mother

She was not being missed

As she donned her costume

Pin curling her wisps.

The songs I’d memorized

Everyone’s part

Ugh

Come on people

It’s an F sharp

The lead

The understudy

Practicing in the hall

I mouthed silently the words

As I blended with the wall

So full of themselves

So absorbed

In this world of pretend

Avoiding

The real world

These pathetic men

I peeked through the curtain

Nana would be there

As the lights flickered

On and off

The show about to begin

I saw her

And that Nana grin.

Encore

They stood

The show a success

I would go home

Pack up that year’s dress

In the cedar chest

Fairies, I was told

The production next.

And so went the years

From age 5 and on

Such a privilege

To be raised

On Gilbert and Sullivan

Song

They did it for me

Please

Could they be more wrong

I only did it to please Nana

And to play along

But the lessons

The variety

So well rounded I’d be

I can still sing you

Some phrases in Japanese!

The engineer

Paying for the perfect upbringing

Showing off his

Perfect

Family

The tunes of the past

Rumbling through my mind

As we are driving

When

I saw a woman

Sitting on her porch swing

Sitting across from an all African American

Cemetery.

Something I’d not known of

Or seen.

My neck craned

To try and see her face

Did she have my Nana’s grin

Did she have a cedar chest

And what lie within

I faced the front and threw myself

Back

Against the seat of my car

I’d never been to this part of town

Down this little road

With the government

Owned homes

The fences all broke

The porches were fallen

I’d been ignorant

Of such poverty

I myself had lived in my car

But more privileged

Far more

Than this scene.

And a sadness swept over me

Such segregation

And trapped in

Inequality

Did the woman on the swing

have a granddaughter like me?

I sat with this gut wrenching

Overpowering

Feeling

A questioning

Of how one little girl

Can break free.

I was raised with costumes

And overtures

But I was not born free

I was trapped in abuse

That was a white collar family

I escaped it

Eventually.

With an illness

And not one penny.

But here

This woman on the swing

Could she have been long ago

A child like me

Was she unable to ever

Leave

Is this where she wanted to be

These questions

Now haunt me

On how one escapes

A life you’re born into

Surrounded by rape

I wanted to sit with her

And hold her hand

Tell her about

The stupid petticoats

And the cedar chest

I liked to smell

Talk about how we saw heaven

And how we perceived hell.

I wanted to stop

And just swing

Holding her hand

We were different

But the same

Dominated

By

The evils

Of man

Stream of consciousness brought to you by a PTSD smell moment

There is some strong language and a brief touch on past abuse and attempted suicide here.

This is meant to be an educational post about me and PTSD and smells and I am writing in the moment as I have just experienced PTSD. This post is not for a “like” it is to be read or skipped. I don’t care about stats. I care about educating and expressing and speaking my truth.

I’ve been therapized my entire life from OCD to anxiety to PTSD with cognitive behavior therapy to somatic therapy to talk therapy to hypnosis. Nope I don’t want any suggestions on any other therapies right now. I know they are out there but I have no transportation and so I just want to explain this experience.

Most people have a nice scent they like whether it is their detergent or fabric softener. If I go into a house that uses downy everything smells like it. Which must be nice. Because then you aren’t smelling the smell that you don’t want to smell. You have your comfort smell. I don’t have a comfort smell. I have chemical sensitivities and so does my daughter so everything we use is unscented. Unscented cleaners do NOT get out the smell of scented ones. And EVERYTHING is scented. My daughter used a hand soap while she was out and it is now on her clothing, which soaked, was put in washer, still smells, which then leads to me cleaning the washer and hanging her clothes to dry for days to then do the process all over again. Then her hands still smell because scented soaps DON”T COME OFF. So everything she touches in her bed, mine, everywhere, anything I can still smell THAT smell. Oh yes, we use lemon juice, and vinegar, and every trick in the book but everyone LOVES their smells and I cannot get them OFF!!!!

A smell gets in the garage…will it get into the house? A smell gets on my scooter…will I then smell it in the house? Then will it get on my clothes because I have to use my scooter? Then will it get in my bed because then I will have to wash everything in my bed. All of this my body cannot do because of my muscle disease and YET I will do it until I destroy myself because I CANNOT STAND strong smells.

This is not just about cologne. Now cologne while I am out will be an immediate trigger for me. But other strong smells while out I can try all of the coping skill that copious amounts of therapy can give me until I just cannot do it any more and want to scream from the top of my lungs. That is my cue to give it up and just go.

When a strong smell gets in my house though it is completely different. I cannot get away from it. I cannot drive long distances, get a break, go to work. I am stuck with this strong smell and it makes me literally lose my mind. You may not like that phrase but it is the truest phrase I can give. My mind is gone. It is lost. As am I. I am mindless. I am panicked. I must get rid of the smell. I must find the source and get rid of it and anything that has come near it. What if I can’t. What if say…termites ate up my baseboards and men need to come in and treat the house and fix the baseboards? Well. Termites ate our baseboards 4 years ago. Can I find a non cologne non fabric softener man to come and take off baseboards and somehow fix them using no chemicals that will then trigger PTSD, chemical sensitivities or send me into a seizure or anaphylactic shock….nope. So here we are with taped up eaten base boards. There IS NOT SOLUTION. Our garage door broke years ago. It takes chemicals to fix it. My wheelchair tire cannot be taken off without chemicals so i drive it totally bald because i cannot have strong smells in the house.

I will tell you why. That is why I am writing this blog. To tell you why I cannot handle the smells.

I was molested. For years. And years. And years. I could not get the thought of him off of me. I could not get the smell of him out of my nose. I could not get the thoughts of him out of my mind. I could not be rid of him. He gave me PTSD. I am stuck with PTSD because of what he did. It is not fixable. It is manageable so they tell me but PTSD I have not seen anyone cured of it and I sure am no where near. So I cope with my mindfulness and my walks and my pretty pictures and I do the best I can to balance that out in my mind what no medication and no therapist has been able to do.

So when I have a smell, a strong smell, that I cannot get rid of that triggers PTSD or seizures or chemical sensitivities and I am left to deal with it with my deteriorating body it makes me want to die. It is an immediate get me out of here now response. It is why I intentionally crashed my car into a tree when I was a teenager. It was a trigger that sent me over the edge. Now, at this time, I am able to control that suicidal moment of thinking with all of the coping I have learned. It takes a long time. I will admit to you that the minute I am confronted with a smell trigger the first thing that happens is I want to be dead so I no longer have to deal with it. It is THAT BAD. It CANNOT be minimized. PTSD and smell triggers are a nightmare.

So last night I had a nightmare of being raped and no one saved me. I woke up covered in sweat in a complete dissociated state and there I remained most of the day. I left the house to get one picture and came home to smells that I am still dealing with after 3 hours so that I can go to sleep and know that in the morning they will be gone. I HAVE to get rid of them because…

I cannot get rid of the PTSD. I cannot take away the pain, agony, memories, nightmares, nausea, of what was done to me. I cannot undo the past. A smell that I am trapped with just triggers a thought and a feeling that I am trapped again with something I do not like and must get rid of. During this I am not me. I am a panicked unstable frantic nonlogical unrealistic child like fearful self. All of my therapist have known this. I have gone into great detail just as I am doing here. I have written posts about how I have scrubbed my skin raw. All because of strong smells.

So yes. I have a shirt that says don’t touch me. I have a sign on my scooter that says don’t touch me. I don’t want to be touched. I don’t want one more smell to get off. I don’t want one more thing to be rid of and try and wipe clean. I am wounded and those smells are salt. Straight salt.

I hope for compassion understanding at least. I rarely get it. People rarely get me. And they do not go out of their way to respect this about me.

I am sitting here right now with the smells of liquid soap on the items on my table wondering how, after alcohol, vinegar, and soap have not gotten the smell off how i will get it off. I am wondering as the laundry is going if the clothes will actually be free of the smell or how many hours I will be up fixing this. That is why I don’t let people in the house anymore. They ‘forget” and whatever. I am so over the whole devil’s advocate thing where people make excuses and try to see the best in others. This is not about them. This is about me and how I do not matter enough to them for them to remember. It’s pretty simple.

So my house has tons and I mean tons of work to be done on it. But the smells…

Every day they are a PTSD trigger.

Every single day.

Every day at some point I wish I were dead. Or as I put it in another post long ago, I just wish I weren’t living THIS. But death is how I honestly feel. I could reframe it in a prettier picture frame but that would not be honest. The truth is, PTSD makes me wish I were dead a lot.

Then I get a nightmare. I get overwhelmed. I get flash backs and something simple like I need to go to the dentist, or my daughter has an appointment or I have to do ANYTHING or my husband has to go away and I slip into a tailspin headed for a crash landing like you’ve never seen. At the last moment I always PULL UP.

This is how it feels to be me with PTSD and smells. It is complicated but really it is not. I find it simple. I just wish those who knew me even tried to grasp the concept of WHY. There is not always a why in life. Why the man chose me to molest. Why my entire family found it more important to abandon me than hear the truth of the past. Yeah. I will never know the why of those things and I do not ponder them anymore. Others do. But this is not a why question. This is an education of me. This is a why answer.

I have PTSD.

I abhor strong smells.

I especially abhor strong smells in my house.

I have a muscle disease, seizures, chemical sensitivities, lyme disease, and a bone disease. I don’t have the strength to get off smells.

But I could not get that man off me when I was a little girl.

So I have to get the smells off now.

You’d think someone would be able to lessen this right. A medication. A therapy. Acupuncture or blah blah blah.

I am currently stuck with this smell issue. All I can do is go out and take pictures of birds and try for just a moment to not fucking thing about it.

Here are the two birds that greeted me today. My husband says that animals don’t see me as a threat and seem to be safe around me and that is why birds and animals come up to me and let me go up to them. I am not sure why. I just know that I am every so grateful that they do.

I had o idea that the crane’s legs were blue. They looked at me. The stepped forward, curious. Then gracefully and slowly walked away. I loved that moment. It made me happy to be alive. It made me happy that I did not die when I crashed my car as a teen and happy that I get to live another day even if sometimes with PTSD it is almost like torture.