20 years NC, but their training is still in my brain

[isilme]

I've posted a bit about this before, but geez I am still coming to terms with how my parents' varied abuses still affect me at age 42, even after a decade or more of NC.

I have recently been diagnosed with an immune disorder that I've likely had since infancy.  It is known to 'wax and wane", and the symptoms are incredibly varied across multiple body systems, so only in recent years has Mast Cell Activation Syndrome/Disorder even had a name.  Unpredictable allergic reactions when no allergy actually exists, sinus issues, dermatological issues, gastro issues, chronic pain, migraines, extreme fatigue, painful menstrual issues, these are some of the symptoms MCAS/D can cause.  In fact, many with a chronic fatigue diagnosis should ask to see an immunologist who knows about mast cell issues - the mast cell stabilizers can help treat it.

I think my mother had it, too, just based on similar medical issues we've both had.  I think knowing this is helping me want to forgive some of her quirks a bit more, but not all of them.  I can understand wanting to stay in bed all day, now.  I can't understand not being able to drag yourself up to help your child get to school.  I can understand wanting the pain to go away.  I can't understand going to multiple doctors in the 1980s and lying to them all in order to get extra doses of pain medications, and writing hot checks for these meds to boot.  And I can't understand trying to get your teen daughter hooked on these same meds by insisting she also gets the same Rx's.  

To this day I am refusing anything like an opiate for migraine, anything that might make me more sleepy than Benadryl.  The most I will accept is codeine in cough syrup when very ill.  I have a husband with chronic illnesses that have required an ER trip and I am the primary driver for us anyway.  I need my wits about me.  but I know a big part of my fear is being like Mom, and that I liked the floaty feeling some of the medications gave me.  

BPD Dad got custody of me at 15 when they divorced.  I split him white and split her black, and wanted him to love and approve of me, and so did my best to not be like her at all.  I had no other family I knew.  All other relatives were in another state my whole life and I only knew Mom and Dad, and sporadically Mom's family who were all elderly even by the 90s and today are all gone except her and a few cousins I don't know.

But I could not will away my "allergies", chronic sinus infections, myopia, and I know now that he has a sadistic streak, he enjoyed hurting me, I think, as well as hurting her by keeping us apart.  He enforced NC with her the whole time I was still living under his roof and told me she never loved me and didn't want to see me, which I believed.  

He also told me taking me to a doctor was a waste of time and money, and so when I was sick in high school I hid it as much as I could, never asked to stay home, and only once of twice shamefully asked to go see a doctor for a sinus infection I just could not beat on my own with Dayquil and Nyquil to get me by.  

Fast forward to adulthood - I still feel stupid or silly or weak when needing to go see a doctor.

Now, learning about MCAS/D I see that I have gone through periods of anaphylaxis, including once this week... and ignored them because I do that when I feel bad.  I'm being sent an epinephrine device... I'm scared I won't even know when to use it since I downplay my body feeling sick.  

I've been NC with dad since 1997, mom since about 2009, and both still manage to hurt me by how they trained me.  

[Harri]

I've been NC with dad since 1997, mom since about 2009, and both still manage to hurt me by how they trained me.

 

Do you want to work through this and make changes?  it will be hard to overcome a lifetime of patterns and reasons why we can't make changes.  It can be done though.   

[isilme]

Harri,

I’m really trying.  I feel shame for the amount of medication I’ve been put on to re balance my body.  It’s making so much histamine at all times I’m on multiple h1 and h2 blockers, singular, symbicort to control the newly diagnosed asthma, plus 2 mast cell stabilizers.  I have huge boxes of weird vials I have to drink 4 times a day.  They help, but I find it embarrassing, particularly to my BPD husband who has adds to the stigma of me being ill.  He’s doing ok for him, but like all pwbpd, seems surprised when I explain something again and again he doesn’t want to hear.  Told him I’ve been sent the epi device, it’s here, I’m embarrassed to show it to him.  I’m afraid to use it.  I don’t like him seeing me mix my vials, try to do it in a ,alter of fact way, not hiding but not drawing attention to it. 

Just going to a specialist at all is a big deal for me.  Realizing I’ve had anaphylaxis and ignored it is a big deal.  I can even remember  being stung by a bee in high school, and getting sick but I didn’t say anything to my aunt, grandmother, or cousins the whole day.  I was sweating, throat hurting, raw,  burning, tight, nose running, feverish, headache, just wanted to be home asleep, but I was stuck with them on a shopping trip in town an hour away from home and didn’t want to mention anything.  I was 15.  And I’ve done this since,  not super often, but I’ve simply suffered quietly and waited till I got home to mention I felt poorly. 

Why am I like this? I mean, I know it’s how I was trained, but damn this bad wiring is so much deeper than I realized.

[Harri]

Hi.  I read about your diagnosis and was happy you finally had an answer.   

It takes time to adjust to having a chronic illness and how to manage it but it gets easier with time.   Fight through that shame.  Hell, get defiant about it and tell that part of you that believes these old scripts to shut it and change your narrative.  You have the right to self care and be healthy.  There is no shame in being sick or in taking care of yourself.  If anything, the shame is when we don't self-care.

Why do you let your husbands opinions and thoughts about your health matter so much?  I realize he is not making things easy for you given your own triggers and beliefs.  I do think you can work this through maybe by recognizing that you and he are separate, he can have his opinion without it affecting you and you need to take action to make these changes in the way you think about things. 

Isilme, nothing will change for you without change and a whole lot of effort.  Change those tapes.  Change those responses.  Change that self talk.

Let the knowledge about your condition settle in and learn what you can about it so you can take charge and lose some of that fear. 

[isilme]

Harri,

I’m trying, baby steps for now. 

[Harri]

I hear you Isilme.

 

[isilme]

Told my sister-in-law about my epi-device Saturday (it's not a pen, different proprietary design I think.  Looks like a flat McCormick spice container).  She took it okay, asked about anaphylaxis, told her it's not really what you see in movies, the epi-device is supposed to stop you from getting to your windpipe closing.  She's told me about her thyroid issues in recent years, and she's about 8 years younger than me, so it felt okay telling her? 

Told her about my bee sting at age 15.  She was surprised I didn't mention anything at the time, but her mother at least was loving and caring and her sister was close to her. 

I think that helped a bit cement in my mind how weird it was to not feel I was worth telling my aunt or grandmother how sick I felt.  She asked if I've done that other times, told her about how the other sisters-in-law's dog started to make me ill at holiday visits, even though I used to be fine dog-sitting him, but I'd quietly stick it out with my eyes swelling more and more and throat getting more painful, face sweating, fever starting, until the family visit at her house was over and then take Benadryl and go to bed. 

I think I have just been lucky - I get what I'd call really sick after one of these events, still recovering from last week's, but it never fit my mind of what an anaphylactic episode was.  Thanks, Hollywood.  Just like a real heart attack can look anticlimactic from the outside, apparently, anaphylaxis can happen and not need a MASH-style emergency tracheotomy. 

I also don't remember telling my mom about my first period, either, and only told them about chicken pox at age 14 because it was alarming to see the sudden spots (Christmas morning, went to try on new clothes, covered in dots that had not been there.)

So, I apparently feel my own health, my own body, is not to be mentioned to others?  Is this just part of internalizing neglect?  Taking my dad's statements of being sick means weak after age 15 doesn't explain the earlier incidents.  So I've had this idea in my head it's better to simply suffer in silence than bring attention to myself?  That I am so unimportant that no one will care anyway?  I am having a hard time unraveling what is going on in my head. 

Does anyone else do this?  I'm doing a bit better asking for help time to time, with rides if needed, and so on, and shower two co-workers where I keep the epi-device just in case. 

I know I am ashamed to tell my husband just because he is such a BPD mess lately.  He's been mopey because he needs reading glasses, and any trapping of advancing age he can't handle.  He is upset I am sick, too, so I avoid flaunting reminders in front of him.  His mood sets the tone for our house and my days.  even at my strongest imitation of Pollyanna, the constant mutterings of age and sickness and the downfall of all things creeps past my armaor and can ruin my good nature over time. 

[Harri]

So, I apparently feel my own health, my own body, is not to be mentioned to others?  Is this just part of internalizing neglect?  Taking my dad's statements of being sick means weak after age 15 doesn't explain the earlier incidents.  So I've had this idea in my head it's better to simply suffer in silence than bring attention to myself?  That I am so unimportant that no one will care anyway?  I am having a hard time unraveling what is going on in my head. 

Does anyone else do this?  I'm doing a bit better asking for help time to time, with rides if needed, and so on, and shower two co-workers where I keep the epi-device just in case.

I think you are onto something with the first paragraph here.  For sure it is the way you were trained, whether it is what your father said to you or how you learned to cope and compensate to protect yourself does not matter right now.  Those are lies and distortions that people told you and that you embraced to survive.  They can be changed and I think you are making big steps in this area.

I have several major health issues I do not talk about much except here and even then I have a problem.  I am working on it and have gotten a lot better.  Some of that is because I chose to talk about this so I can get over this defense of mine and some is because my hands were tied and I *had* to say something (ie "take me to the hospital please").

Reading this, I was quite proud of you for saying something to your sister and that you will tell a couple of co-workers.  I hope that does not sound patronizing as I do not mean it that way at all.  I can simply relate tot he struggle of not going to the docs, then feeling awful, then having to go, then telling others and everything else.

You took huge strides Isilme!  Talk about taking lemons and making lemonade... being sick is the lemon part and taking these unchosen circumstances and using them to work through some old issues is the lemonade part.

 

[isilme]

Thanks, Harri. 

It helps to know that others are also reserved about speaking about their issues.  At work I am okay talking - it got to where I could not hide how badly I felt, I was having to walk, sit, walk, sit, and had no stamina to stand, talk, and walk all at once.  This is not including the couple of co-workers who walked in on me ugly crying at my desk.  They've come to ask me how I am, which in turn makes me cry, but I think it got kinda scary because everyone goes to the big C when you mention daily fever with no infection. 

So Mom loved taking me to doctors.  She liked going, too.  I'm not sure she was Munchausen's or anything, but she would not pass up a chance to use me for attention.  She would notice when I was little if I had a sore throat (all the time) or a sinus infection starting (also all the time, shows a pattern that also conforms lifelong MCAS).  After I was old enough to learn shots weren't all bad, and all visits did not result in shots, and that amoxicillin usually made me feel better after a few days, it was not so bad.  I am not sure how often I told her I felt bad and she could just hear my nose snuffling and voice get hoarse.  A few times Dad would come too, but it was almost always a Mom thing to go to the doctor.  Dad was the one who took me to the ER when my arm got broken, but he was the one with me at the skating rink.  He had one of his good days and we went roller skating but I was 8 and didn't really know how yet, and broke my arm.

I still can't figure out why I didn't mention my period to her when I noticed - I remember being 11, getting ready for the Christmas choir concert at school, and my tummy hurt like I was getting sick, I noticed spotting, knew where mom kept panty liners for minor incontinence and grabbed one, read the instructions and went to my concert.  I think maybe I did not want to be late?  Or told we'd stay home and miss it?  I really can't remember.  I know she figured it out by the time I was 12 in Spring that year, cuz she tried to get me a full pelvic exam and blood workup - she DID have a history of hyperthyroid issues plus endometriosis, but that was scary at 12, my first "paper-dress" exam.

Dad went the opposite way, but I think he mostly had me to hurt her, I was a thing.  He didn't really want to be bothered with food, clothes, and whatnot for me, so seeing a doctor was just an additional expense not worth it.  He did the bare minimum, and my quietness about the neglect and abuse did the rest.

I am guessing that the years in the basement family room - keep quiet, don't be underfoot unless we want you, we don't care what you're doing as long as it doesn't cause us problems, I guess telling them I was sick, or that I had a broken mattress with springs poking thru, or that my window would not quite close, so many things I just felt I had to deal with on my own, or just 'get over'.  I took an extra comforter and put it on top of my mattress and then put sheets on top of it to pad the broken springs (did this twice actually, once about 10-12 years old, again at my step mom's house).  I grabbed the insulation plastic we used here and there in the house and covered my own window, my room was now warmer.  I was 13 or so. 

I suppose being sick fell into the "just get over" category for times when I had no ability to get to an MD or no $$.  Meh, it's just really weird.  Every time I think I've found all the bad programming, I find something new.  I need a firmware update. 

[Cat Familiar]

Like you, my mom dragged me to the doctor about even the most insignificant thing. As a result of that, I avoid doctors as much as possible and do my own medical care and self diagnosis. I know that’s not smart, but so far it’s been OK. It’s been a couple of years since I’ve had a checkup, so I’ll grit my teeth and make an appointment.

I had a nontypical anaphylactic event. I think it was due either to a spider bite or a kissing bug. I woke up in the middle of the night with the soles of my feet and the palms of my hands itching intensely. When large hives suddenly appeared on my trunk, I knew it was an allergic response, one I’ve never had the likes of.

I took a Benadryl and by that time, I was simultaneously getting hot and very cold at the same time. The only place that was comfortable was the cold porcelain of the bathtub after I’d taken my clothes off. I was aware that my throat was closing off somewhat and I contemplated calling 911. But then, the Benadryl started taking effect.

I lay in the tub for probably a half hour and felt what appeared to be a bite on the back of my neck. The welts receded and my feet and palms quit itching and I was able to return to bed.

Now I have an Epipen but it’s likely expired. What I discovered is that they retain much of their potency for years after the expiration date, but far better to get a new one.

[isilme]

Cat, they gave me something called Auvi-q as an alternative to the Epi Pen since it's so expensive.  Not sure if that helps. 

What you just described sounds about like my feelings, save the welts - I get hot/cold sweats.  This last week I remember coming home and my husband had to put three blankets over me for me to stop shivering, but I was sweating, too.  I think I will call it the tight sore throat sweats.  Those are the biggest symptoms I can mention, but it's not a Hollywood style ana-event.  And, I've just self-treated with Benadryl or Nyquil (which some formulas contain Benadryl, it's what makes people sleepy). 

I don't always end up with hives, that was more common as a kid, mystery hives, my skin seems to just get pallid and/or flush pink.  The flushing is a hallmark Mast Cell Activation issue. 

Yeah, I spend a lot of time researching symptoms on the web to talk myself int or out of a doctor visit.

[Cat Familiar]

Not long after my anaphylactic incident, I had to go to the ER for a raccoon bite. (I had reached into the kitty bed on the shelf in the goat hut, after hearing snoring. Instead of my cat, it was a raccoon.)

While there, I chatted with a nurse and told her about the anaphylaxis and she told me that I could double up on the Benadryl and add a Tagamet if it happens again. So far, it hasn’t.

But I’ve been mindful about pulling my bedding away from the wall, and I haven’t had anymore bites.

It’s criminal how they’ve jacked up the price of an Epipen. 

[isilme]

It sucks that they raised the price but it HAS encouraged others to come up with alternative devices.  Once these gain some traction Epi-Pen will have to come down to something reasonable, or they will lose all customers. 

[isilme]

A new thing to note that I didn't realize was weird:  Having a discussion this week with yarn ladies about drinks and things that have made us ill after overindulging.  I mentioned a bad night with the Greek liquor, Ouzo.  I was in my late 20s, was at a house party to which we'd walked, so I was not the DD for once, and I did not drink beer and did not know how to pace liquor well.  I knew that I might be sick, and all the bathroom were full.  So I went outside to sit, clear my head a little, and if I got sick hoped to do it away from the door.  Two guy friends, like little brothers to me, saw me and were walking to their house down the block.  They were being kind asked if I needed anything, but were also playing a sort of game, to see if they could keep me from throwing up by not leaving.  They knew I could not do it if someone was present.  Finally, they left, and I gave myself permission to get sick.  Another time, after too much champagne, I had a similar incident where a female friend was trying to hold my hair and I guess do all these girls things you do when your drunk friend is getting sick.  And I kinda had to forcefully ask her to leave so I could vomit, I just could not do it in front of anyone.

Everyone at the table thought it was strangely polite to be holding back being violently ill to avoid grossing others out.  I didn't realize it was strange.  I guess this is yet another way I felt I needed to maintain control and not let people see me at my worst, weakest?  I've not let myself get like that since, so it's not come up.