New Doctor: "This is a physical thing, and it is real."

Ok!  Exciting movement with a doctor!  First however, I’ll catch you up.

So I’d been seeing a naturopath for the hormone stuff.  At some point several people were asking me if he’d done any tests, and because I said No they encouraged be to go see a regular medical doctor at least once to see what tests they might be able to do.   Ok, sounds like a reasonable idea, right?

I saw that the women’s care clinic for the university near me was just down the street from my work.  Great.  Women’s care would include peri/menopause care, right?  So I looked on their website and of all the doctors listed, none listed perimenopause and only 3 listed menopause as something they specialized in or had interest in, and none of them were taking new patients.  Oh good.  So I asked a nurse there and she said she’d ask the various nurse practitioners which of their doctors they’d recommend for menopause / perimenopause issues.  They agreed on a suggestion for whom I should see and I made an appointment.  But when I got there and started our conversation, I realized she wasn’t any kind of expert on the subject, and my circle of knowledge about it wasn’t necessarily much smaller than hers.  Turns out her specialty is geriatric medicine.  Nice one kids, not quite the same things as perimenopause issues.  But thanks for playing.
She gave me a follicle stimulating hormone test, saying that those numbers drop for women within a few years of menopause setting in.  The test came back negative, but she said the progesterone I am taking could likely affect the test, and could I go off it for a month so she could redo the test.  I almost yelled “Are you fucking kidding me?  Of course not.”  But instead I nicely explained that she must not fully understand the severity of my symptoms when not medicated to suggest such a thing.  Then she suggested I go on anti-depressants so I could go off the progesterone so she could redo the test.

Related: I started having heart palpitations recently.  This same doc did tests, found nothing, said she’d order me a wearable heart monitor and call me when it came in.  I haven’t heard from her since.

I decided I didn’t want to continue with her due to her obvious lack of understanding of what I’m actually feeling.  Then, I had a very bad day last week, a full breakdown that kept me from leaving the house in the morning.  I ended up on the phone with a good friend who has also had hormonal struggles recently, and at the end of an awesome comforting conversation she directed me to her doctor who has been fantastic for her hormonal ride.

Which brings us to today. I just got back from the appointment, and WOW was it great, and I learned a lot.

First off, she said that the very first doctor I saw back when this all was ramping up (the one that said 1. I’m too young for all this, 2. I’d have more symptoms if it were that, and 3. Here have this Zoloft) didn’t know what she was talking about, that most women start the very first symptoms of perimenopause in their mid to late 30s and just don’t realize that’s what it is because most only know about actual menopause, not perimenopause, which are related and attach but are distinctly different parts of the overall process of women’s wombs turning on and off.
She said that the last doctor I’ve seen also didn’t know what she was talking about, because the follicular hormone test would *not* be affected by my taking progesterone, plus the numbers only drop for *some* women, not all.

She explained so much for me.  She said that everything I’m feeling is because of physical stuff happening in my body, and it isn’t because of psychological issues.  The endocrine and nervous systems are attached, and the severity of my symptoms tells her that my nervous system is very very sensitive to hormonal changes from the endocrine system.  She explained that it feels psychological because the brain is part of the nervous system, and it is trying madly to do it’s job of interpreting the signals it is getting from the rest of the nervous system. 
She explained that on those bad days when I’m really struggling and I feel wiped out, feel no energy for anyone else, feel like I’m “out of spoons”, it’s because I’m essentially having to drive my nervous system down the road on 2 cylinders; it’s moving, but having to work much harder than normal, and burning way more fuel than usual, and when it runs out of fuel it has to be allowed to recharge before I can drive it more.  She said that “no spoons left” feeling is an actual physical reaction to an over stimulated and exhausted nervous system.  She said that it is important to make self-care a priority, and when I feel out of spoons and need a recharge, do it.  Because it is a real thing, the recharging, putting myself in situations where my nervous system gets a rest and isn’t triggered.  She stressed the importance of doing what I need to do to care for myself when I feel bad, regardless of expectations of others.  She said, “If I had a concussion I wouldn’t go to a party that night.  This really is like that.  If you need to stay home, stay home.  Your body needs it.”

Spoon Theory & Fight or Flight

I've gotten a couple new tools recently to use when I need to explain some of my current shit to someone.  Maybe you will find them useful too.

Spoon Theory

I'd never heard of spoon theory until a friend posted a link to a tshirt that said something about no more spoons, and having only knives left.  I looked it up to find it's a way of explaining what it's like to have one of a number of mental or physical issues that leave you with limited mental or emotional energy to deal with life.  Christine Miserandino came up with it while trying to explain to her friend what it was like to have Lupus.  You can read her full story on her website www.butyoudon'tlooksick.com.
The idea of spoon theory is that spoons represent a unit of energy for doing things in your day; a typical person has an unlimited supply to spend during the day to do all the things they need and want to do, while someone else with a disability, chronic illness, or mental issues might have a limited supply, and when that day's supply is gone they have no more until they get a chance to do whatever they do to recharge (usually rest).
I don't have nearly the issues of someone with Lupus or other chronic diseases; I don't spend spoons taking a shower or cooking my dinner.  For me it's certain kinds of interaction.  For instance, I didn't spend any spoons being at work today as it was an easy day and no one asked me any hard questions nor put me on the spot about anything; however I went to an industry function after work, and though I enjoyed the talk immensely, I came home exhausted due to the interacting with strangers that happened.  I arrived early and found a seat near the center and sat alone for just a couple minutes; then a woman came over and sat next to me, saying it was a good location, and introduced herself.  She asked me about myself, and then one by one various other women who knew her came over until there was a small group of us, and all of them knew each other, except me.  I ended up right in the center, often being talked around.  No one was rude, and they did try to include me in the conversations, but trying to seem comfortable in the middle of the group spent many spoons.  Most of what I had left for the day.  I'm now under the covers at home, enjoying the quiet, and recharging.

Fight or Flight

I've written about having the jitters before.  Well, I think it's the same as fight or flight.  It's like the switch for fight or flight short circuits and dumps those chemicals in my body even when nothing external warrants fight or flight.  At the beginning my brain would always grab something and decide that must be the thing that is wrong, and it'd take me a full day (or two) to get over it.  Slowly I'm learning to just feel the sensation, and keep my brain free from needing to pin the sensation on an imagined danger. It is still distracting, but doesn't take me down emotionally for an extended period of time.  It isn't easy though.  But have faith, if you get the jitters, know it can be done.

You did not just say that.

I’m learning that as important as it is to take care of myself in certain ways to help through the perimenopause symptoms, I have to also be patient with other people who don’t have a fucking clue what I’m going through, and don’t understand it even when I try to tell them.  If you've never had anxiety, or other mental issue, or for that matter any issue that isn't visible on the outside, it is very hard to understand. 

The hubby and I just went through Landmark Forum.  One thing to know for this story is that part of the curriculum involves looking at the stories of your life, and figuring out the difference between what really happened and what is just the story you’re telling yourself about it.  It’s surprising to see how much of what we tell ourselves about our past are just stories vs. what actually happened.  When you really get it that some bit of your past you’re carrying around is JUST a story and not what actually happened, its a wonderful feeling to let it go and go into the future without that.

So.

At the end of the last day they encourage you to sign up for the advanced course, which we decided to do.  Ok, I wasn't ready to do it, wasn't ready to commit, but I did due to those around me telling me I should and asking why I didn't want to commit.  As we’re registering for it, the young man signing me up hands me a piece of paper and tells me to write down what I want to get out of the advanced course.  I’m supposed to put down something like “The possibility of living my life without the perceived judgement of my dead parents in my ear all the time.” Or “The possibility of living my life authentically and genuine in my word.”  Something like that.

Well  the current anxiety stuff affecting my body has one sure fire trigger, and that’s being put on the spot to say something thoughtful.  I didn’t do great at participating in the forum while we were in the sessions, sitting quietly for most of it.  I had all of my breakthroughs back home in the quiet of my kitchen, alone, able to think things over without someone watching and waiting for my answer; then I’d have huge brain exploding realizations.

Now by the time I was registering with this guy, I was already using a certain amount of emotional energy to keep myself together as it was the end of the last session, and I’d just had a conversation with a couple people that made me feel pressured to say Yes to this course rightnow.  So I was smiling through my anxiety, pretending to be/feel normal, just wanting to finish up this registration and get the hell out of there and go home to my quiet empty house. 

So this guy sticks this form in front of me and wants me to put down right then some meaningful thing (or three) I want out of the next course.  And I immediately feel the anxiety ramp up; I hadn’t had any time at all to think about things on that level yet, and had no answer.  The fight or flight reaction started kicking in, every cell starting to slightly vibrate.  I said calmly, “Oh thanks for the form.  I’ll take this home and think on it.”  He persisted, “Oh just write something down now.  It’s ok if it changes, we just want you to start your advanced course right now, and saying what you’re here for will do that.”  I put him off again, slightly less calm in my voice, and he persists again.  So I explain, “Listen, I’d rather do this at home.  This whole seminar has been triggering my anxiety pretty hard, and so is your pressure to do this right now.”

That’s when he looked at me with a smile and said, “Anxiety?  Are you sure that’s not just a story you’re telling yourself?”

I heard Andrew beside me draw in air quickly, and he has since explained the action to go with that sound was him visibly wincing at what the guy had said.  Andrew said he fully expected my hand to fly and smack the guy across the face.   As sticking up for me with other people wasn't something my first husband ever did, I'm always a little surprised to see Andrew get upset with people who make comments signaling they really don’t know how much this has all affected me nor how really difficult it’s been; sometimes people make light of it without realizing how serious and difficult it has been for me.  I’ve been pretty good at hiding away the majority of the worst of it from everyone but Andrew, but he has definitely seen it, and has now come to my aid a few times, telling people to back off.

I responded in a very hard and low voice, “No, this isn’t just a story. Yes, it is real.  It is a physical sensation increasing in my body right now, and comes from the hormone changes going on in my body due to perimenopause.  I PROMISE you, IT IS REAL.”  Me, starting to shake as I finished.

The guy did an amazing job of keeping the smile on his lips considering how immediately it faded from the rest of his face as he realized the level of anger he’d just triggered, seeing in my eyes that if I had a flame thrower hung over my shoulder right then I’d likely have used it on him.  “Oh ya?  You don’t think it’s real?  How real does this FIRE feel you fucking asshole?”  Or so I imagined saying as I engulfed him in flame in my mind with my imagined flame thrower.

Andrew leaned forward and said something to the effect of, “I invite you to consider [more Landmark jargon] letting her do this at home.  It will be a much more useful experience for her, I promise.”

The woman who was registering Andrew right next to us leaned over and said quickly, “Of course you can do it at home.  When you make your on-line account you can just put the answers in there.  That’s just fine.”

So maybe one of the things I should put down as a goal is the possibility of holding patience for people who don’t know what I’m going through.  I think so.