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.