Sometime around my September birthday, I get all introspective and think about my life, and those thoughts usually end up in this blog. October 10th of last year was my last post here and also the 40th birthday post. I just read through it and man, that girl was spot on and I'm fairly certain this one will pale in comparison. For all that changes, some things don't-- that blog post in particular. You wouldn't know it, judging by the barren blog, but I have written so many things-- some not good for public consumption, some that may be seen in the future, and many others a confused attempt to figure out this current life. There has been an underlying instability of emotions and mental faculties in relation to the weirdness of this world and my physical health. I'm just not always the same person day to day.
This year's 41st birthday was rushed as I was preparing for a trip to Mayo Clinic to nail down the causes of health problems that have subsumed my daily existence since January 2020. As many others have experienced, my life shrunk extensively after those events and in the spring of 2020. My fortieth year seemed to close in on itself. As symptoms persisted, depression and anxiety creeped in-- my own personal brand and the kind that comes from reading the news. The spring and summer of 2021 saw me hopefully getting somewhere with pulmonary rehab and appointments with the local cardiologist and pulmonologist. After many long months, the realization came that there was no interest in a diagnosis, but a series of bad medical advice from "specialists" who tossed harsh medicines at me before throwing their hands up in the air and blaming my problems on being a woman. It's 2021 and everyone has their hill they are willing to die on. Shuffling a woman to the side with "You're female" as a diagnosis is unacceptable and my personal hill. I'm too young for this and I want my life back.
Mayo Clinic was a revelation, a glimpse into how the medical world should be modeled. I asked them for two things: 1) a diagnosis 2) a way to treat the diagnosis without pill bottles being lobbed my way. A few weeks and two trips to Rochester, Minnesota, and I have both. For once, in a long time, the depression and anxiety has diminished knowing there is nothing physiologically wrong with my lungs or my heart. (The asthma was/is definitely a thing, but hopefully it has righted itself). The final diagnosis is Central Sensitization, Chronic Fatigue, and POTS (postural orthostatic tachycardia syndrome-- that dizziness, seeing spots, racing heart business that comes from standing up too fast). In basic terms, my brain and nervous system are in fight or flight mode constantly and do what they can to tell my body to slow its roll, whether by making the heart race or make me feel fatigued to the point where I can't think straight, experience a heavy weariness, and pain.The correlations between my emotional/mental state and my symptoms were glaringly obvious when I began charting our my struggles for the doctors and nurses at Mayo, and then my education classes for treatment brought everything into perspective.
So what did my 40th year look like?
In the last year, I have started and finished one book. ONE. As many of you know, I devour words. I read everything. A good many books languish half read on my shelves no matter how much I loved them. I picked up some fantastic titles this year and no matter how beguiling they are, they simply aren't read to the end. It's depressing.
I keep four calendars/planners and still can't remember what's happening tomorrow. Today, as with every other Sunday in the last six months, I can't remember what time church began and had to look it up. For the color coded, five minutes early girl that I am, it makes me anxious.
I can't recall most conversations with anyone outside of my house. I forget to text back and return messages. I know I repeat myself and it makes me feel like an 85 year old woman whose mind is slipping. It's depressing.
I can't remember words. My brain is forever running a thesaurus and coming up a word short of the one I need to adequately express all the things inside of me. When I'm well past tired, I make new words-- the kids find it hilarious. I find it galling. And I use galling because I recently used it as "gauling"-- not the Celtic French, Miranda-- GALL: impudence, effrontery, bitterness of spirit. For the first time in my entire life, I struggle with spelling. I know when it's wrong, but have to look it up to get it right. It's depressing.
I have sticky notes on everything. I rely more on textbooks than my own knowledge when teaching. I've got it when it's right in front of me. I locked myself in my room and cried a few months ago when I couldn't remember the name of the 16th president, the tall and honest one, the one who was President during the Civil War, the one who was assassinated, , the one who was succeeded by Andrew Johnson and then Ulysses S. Grant. I knew all these things and not Abraham Lincoln. Makes that BA in History look brilliant, eh? It bites keenly. It's depressing.
I'm not currently the person who my husband married. I'm not the mom my kids have always known. I'm not the friend I once was. No is a frequent part of my vocabulary. It's depressing and carries insecurities.
Long before diagnosis, I knew intentional living was the only way to cope. My 40th birthday post is about living this way. Funny how it's a year later and I'm still surprised by that post. I didn't remember ever writing the post and only read it after writing this post in my notebook before bringing the draft over here. On bad days, it's overwhelming trying to intentionally push myself to get out of bed, to do the things, to be in that moment, to do what needs doing, to put away pride and find the textbook or video or google for that answer that needs to be given, that remembers for me, to cover everything in post notes. I might not remember something in a few days, but I can show myself what was done. It's a saving grace that there are good days to mitigate the bad ones.
My days are full of checklists that aren't typical of a 41 year old woman: take the meds, get out of bed slowly, stand up slowly, drink the water and remember to eat, walk, do the stretches, do the things to relax, don't watch or read thrillers (the heart rate hit 161 watching Black Widow), don't laugh too hard (passing out isn't a funny reaction), sit down the first moment it's needed, don't rub the chest and its phantom-not real pains, be gentle with myself because there will be days where a sneeze can tell my brain to shut it all down, let go of stress, let go of people and situations that cause stress, it's shutting off the news, it's a lot of reading words I won't remember because right here and right now my spirit needs it, it's better management of the stress of grief... my life is micromanagement of self, introspection at a hyper level.
These things aren't me looking for some kind of pity, just that I've learned so much this last year about myself and I know so many that struggle with so much more than I do and have issues well beyond mine. I had eight hours of zoom class education through Mayo, because surprisingly, my diagnosis isn't primarily treated with medicines (gabapentin is pretty magical) but with lifestyle management. I'm utterly fascinated with the whole diagnosis and treatment. I've decided that this world would be a much better place if we just did a few things that are listed on this diagram I was given.
We all have the ability to retrain our brain and forge new neuropathways for a much healthier, positive life. It's overwhelming for me at times when I consider all the things needed to get back to pre-2020 me when I'm starting with goals as simple as walking five minutes a day, the stretches, and the breathing exercises. I've been told it could take six months to a couple of years to get it all back. The meaning of "baby steps" never felt so real.
This all seems a bit heavy and, well, depressing, but I've had some of the best days recently. I'm calmer in spirit with a game plan. I'm no longer caught in the bubble of "What if?" and back into the mindset of "it is what it is" as I take the small steps forward.
