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.

33 thoughts on “Their is no fix #chronic illness #PTSD

  1. I read everything, I am speechless. I am trying to but I can’t even imagine what it must be like. 25 years of my life and I have never seen or heard of anything that is even close. You are living with that for 25 years now, that is really very long . In a way that is impressive and you are so strong.
    I am so sorry to learn this. All I can do is pray. I will do that for you.

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  2. Fuck, what the fuck is up with that so called friend. To that friend: Um, yeah, you be in pain 24/7, not be able to go out because everyone has something to cover up, with their nasty cologne and perfume. And you try growing up in a family that could not care one iota less about you and then come back and tell me how sweet and happy you feel. Christ! What an insensitive thing to say.

    This is so horrible. I know I have some sensitivities and I hear ya about it being easier to just say you have allergies. It’s ridiculous, insane and beyond annoying. It’s a whole lot more than allergy. That is awful what happened in the dentist office. Something to be hyper-vigilant about for sure. Totally understandable you would be preoccupied with it to say the least. Traumatized by it really. Like what next?

    I don’t know how you do it with the pain. Not sure I’d survive that. I had sciatic pain (probably not even comparable but) I’d been taking ibuprofen for it. Luckily it worked. Sensitivities working in my favor in that situation. I know people who need much stronger pain killers for sciatica. Well, one day I decided to see how bad the pain really was and didn’t take any ibuprofen that morning. When I got in the shower, the pain wasn’t all that bad. But mid-shower it started getting horrible, by the time I got out of the shower, I was in tears from the pain it was so excruciating. I just can’t imagine living with it day in day out like that.

    I’m so sorry that you have to live this way.

    PS…I don’t use chemicals in my wash. I don’t know if you’d be able to detect it but I use Trader Joe’s detergent. It’s expensive but there is no strong perfumey scent that I can make out. I am sure you are more sensitive than me so not sure if this would be the case. No fabric softeners in the drier either. I bought one of those llama fur balls that’s supposed make less static. But it only works if I let the laundry cool down.

    I hate this for you. I wish I could so something to help.

    Liked by 1 person

    • I never spoke to her again after that. It was an awful thing to say and I cannot have awful people in my life anymore! Those words after everything, I just don’t tolerate. Thank you for being passionate about it and caring. There have been many insensitive things said to me. I don’t think many that have been in my life have even tried to understand my daily fucking war!
      About the dentist, i was worried they’d kick me out because i was a liability but I haven’t heard that. All they were was caring and compassionate. I go in to get the first 2 months of invisalign trays in a few weeks and so we will see! My teeth have to be realigned though because they are being damaged by hitting each other, this was also because of the seizures hurting my teeth and they just can’t recover if I don’t get them straight.
      Oh sciatica is horrid. I had it a few times and it was bad nerve pain. That was only when I was pregnant though. I don’t know how people live with it on a daily basis.
      But yeah, being in pain non stop is pretty miserable. I was awake most of the night because I just hurt to badly to sleep.
      We use Trader Joe’s things too. I love that place. We get all our fruit from there. As long as it is unscented I can handle it but otherwise most of the scents give me rashes.
      I first learned of the chemical sensitivities when my daughter was still in school and we picked her up from her art class and she had all of these paintings and pottery. I thought nothing of it and all of a sudden my husband said I was blue. Couldn’t breathe. Started throwing up. It was terrible. I then saw a bunch of specialists and it was determined my immune system is taxed due to the lyme disease and muscle disease and so it has given me this other disorder. I had honestly hoped it had gone away since it has been awhile since I had a severe reaction ( i keep an epipen and inhaler on me).
      Thank you for caring

      Liked by 2 people

  3. Oh dear these two posts need proper attention. I will come back in the morning when I will have time to read it properly. Leaving hugs as I can tell you were really brave thinking through this stuff.

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  4. When I was younger, I did not see the RED FLAGS my grandmother warned me about. Now I see them clearly no matter how I feel on any level. It has taken me much time, self-observation and patience to understand or even get others. Usually by the 3rd meeting, I know with whom I am dealing. Fortunately, I worked with an outstanding doctor years ago who was helpful in explaining folks who truly care and those who are just out for themselves. I have been burned by many a false friend and it hurts. May you rise and feel better. I enjoyed Louise Hay’s book, YOU CAN HEAL YOUR LIFE. Louise, as many of us, had many horrible experiences and wrote a book that has helped many. Bright blessings and wishing your life turns around to a more serene existence.

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    • Thank you for sharing your experiences with me and the book. I may have that book. I have read alot. I will check.
      I am hopeful my life will turn around, I just need to knock down some of these illnesses as pain is hard to live with.
      As for friends, I have very old ones that I trust but they are few and I hve lost many who do not have understanding or empathy. Hopefully more will come my way.
      What kind of red flags did your grandmother warn you about.
      I need to go back and read my own blog post because I thought I had written mostly about health…I will see

      Liked by 1 person

  5. It is bad enough being in terrible pain without your chemical sensitivities as well. I wish it were not so for you. I relate to some of your problems on a very deep personal level not just the physical but the emotional ones too. Gentle squashy hugs for you.

    Liked by 1 person

  6. Oh i hear you on this one … think we’ve talked about this before ay … I got a super sensitive snout and hearing … drives me insane sometimes. And like you say, theres only so much you can do to ‘prevent’ or to assist with what might come up … but the rest … shiet … you just can’t …
    Our neighbours spray all the time … think they love killing off any little sparkle of anything growing … and I can smell it through a closed door! Same with paints, cleaners, air fresheners etc etc. When I do my art, I put something over my face so im not breathing it in … but I always react, immediately and the next day … which makes what I love doing, extremely difficult to do!
    So i hear yah .. would love to have a solution, but haven’t found one yet …
    Love to you xo

    Liked by 1 person

  7. Oh my goodness, what a horrible lot of crap you’ve been dealt. You must be an incredibly strong person to have coped with everything for so long. I’m sorry you feel alone, I can’t even imagine how difficult your life must be, but know that you’re not alone. There is a global community of Spoonies that have your back. Hugs and positive vibes your way!

    Liked by 1 person

  8. I can relate! I don’t have MCS but do have multiple AIs (inc chronic Lyme) and mold triggers neuro problems for me. Any idea how hard it is to avoid mold?! It is everywhere. Most buildings have water damage and they are never 100% remediated. Even if I avoid the buildings, coming into contact with things that have been in those buildings makes me sick. Anything that holds spores makes me sick – cardboard, paper etc. It is incredibly frustrating and yes, depressing, but I try to just get on with things the best I can, modify my lifestyle where possible, and spend a lot of time in sunny, open spaces. Anyway, I just wanted to say I appreciate what you’re going through. Please hang in there!

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    • I have the same. Sensitive to all. Everything. I do best outside in the sun away from every single human being and everything synthetic. But yep. Mold is everywhere in everything on everything especially in Florida!
      Thanks for your understanding. It is so frustrating.
      Lyme is a real bitch. I have neuro-lyme and we are guessing that is why I have seizures but it is not completely determined. I can’t tell what is what and what has caused what anymore

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  9. My heart breaks for you and all you have and are currently going through. I also live with chronic illnesses – but they pale in compassion to yours but I have heard similar comments from a friend recently. I was so socked I couldn’t respond………….I am sorry you experienced that also.

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    • I’m so sorry you are living with a chronic illness. I’m sure you understand me more than many could. It’s an awful thing to have in common and yet if not we would be going through this totally alone in our emotions because most people just don’t get it.
      Thank you for your sweet comment

      Liked by 1 person

      • You are so right……….I am sad beyond words that others live with chronic illnesses but to go down this path alone would be…….wow………so many words come to mind…….terrifying and soul destroying!

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      • Before I started my blog I was alone in this. In the PTSD, in the chronic illness, having a child with a chronic illness, all of the sufffering and struggling I had weighted on me and me alone. Now I know that I am not alone in this and others do understand how hard even the simplest of tasks can be for us. Others can understand and make me feel like I’m not absolutely crazy for being overwhelmed by having to put clean sheets on my bed!

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