Sunday, January 27, 2019

Just Surviving

(TW: Depression, loneliness, suicide.)

I guess I have some catching up to do here.  Last I wrote, I was trying Aimovig, the first anti-cgrp medication approved to prevent migraine. THE FIRST EVER MEDICATION INVENTED PURELY TO PREVENT MIGRAINE!!!  Do you get why I am advocating and trying to bring awareness to migraine all the time now?  Anyway, after 4-5 months of that not working, and some major stomach complications along the way, we switched to Ajovy, the second of this class of medications to be approved.  Ajovy has been a mixed bag.  The stomach complications aren't totally resolved, but are manageable.  My first month on Ajovy, I felt I was definitely trending upwards.  The second month I felt I hit a brick wall.  This past month, I don't see any trend.  I haven't left my house in almost 2 weeks.  Is that purely pain, migraine pain, or fibromyalgia pain, or depression, or my new hermit tendancies picked up the past year? I am not sure. It's a mix of it all, I think.  I take another shot of Ajovy and see Dr. Young, the headache/migraine specialist in mid-February.  So, we'll see.  I have a (shorter than I'd like it to be) list of everything I can remember helping a bit over the past 20 years, living with Chronic Migraine.  I am going to ask him to do everything safe all at once.  Something has to give.

Sometimes I try to be upbeat and helpful on this blog--whether that shows or not I am not sure.  I don't want people to feel that they go through things alone. I try to bring awareness.  Right now, I am writing just for catharsis, and therapy. I'm writing to hope to dampen the storm raging and lower the water levels around me a bit.  I'll explain the metaphor in a minute.

I added the trigger warning above because honestly, I feel as though I am just surviving right now.  I added loneliness as a warning, not because I am alone. I have lots of people who I love that I can talk to if I choose to. But I don't think anyone who is really Depressed ever feels they aren't in it alone. I am not happy, am not thriving, am hardly functional most days, and just overall feel overwhelmed.  The Depression (capital "D" Depression) has set up shop in my head and isn't seeming to budge for much.  It's like I am trapped in a severe rainstorm, and I have no real shelter.  I talk to my husband or others, and I feel like I have a temporary umbrella over me.  But in the end I'm in a place where the water is rising and an umbrella is only a temporary shield.  At some point I won't have my head above water anymore.  This isn't a cry for help.  I tread water really well (literally and metaphorically) and can do it a long time.  I don't feel at direct risk at the moment, but unfortunately, I have enough experience to know that can change quickly.

I never know for sure where or why these feelings pop up.  I know Depression is a chemical imbalance, not just a feeling.  Why is it worse at times than others?  I don't know.  Does anyone?  Maybe the Migraine pain and accompanying symptoms, the Fibro pain and accompanying symptoms, and being a hermit all at once doesn't help. I know it doesn't help.  But who wants to go out or be around people when your head and body is screaming at you to go into survival mode and just protect yourself in the quiet darkness of your home?  I still have freaking Christmas presents to deliver.

Everyone knows that politics is a passion of mine.  I have tried to have some productive political discussions this week that lead to no where.  It makes me question the motives of people that I don't want to have to question their motives.  Other than that discussion, I can't even really handle politics right now.  It's too dark, it's too depressing.  I had to stop watching the news after Trump was elected.  I found myself having physical reactions to his voice and things he was doing.  I read the news, to the extent possible, but with a screaming migraine I don't catch all I should or need to to be really effective politically.  I had to sit out the 2018 election cycle largely.  That hurt.  I don't want to do that again but I feel everything I care about is just too much right now.  That sounds so weak.  I hate letting people down.  I still have ideas I want to accomplish and people I want to work with, but I am not consistent.  I am writing this at 4 am-ish.  That means tomorrow will probably be a waste.  Maybe not. I never know.  But not having any sort of a regular sleep cycle is bruising to my chronic pain issues, my ego, and everything I want to do.  When your schedule doesn't match up to virtually anyone, it's hard to collaborate on anything.  And the guilt from that, which I know I put on myself and doesn't come from others, can make it harder to breathe than I'd like.

Politics was what saved me once.  I floated, floundered actually, for years after giving up law school and a career, feeling useless, purposeless, just less.  Then I got involved in politics and all of a sudden, even though it's not a money-maker, I at least felt a purpose again.  I felt I had a cause I could spend energy, time and thought on.  I felt I might be even good at some of the background stuff.  I have never really felt a strong urge to run for office, but I feel like helping put the right people in office is just as important, and something that never has to end.  I am not term limited from that! Volunteering is ideal for people with chronic illnesses.  No one fires a volunteer, if that volunteer is helpful.  They are just happy you show up.  That's been my saving grace a long time.  But right now, I feel I am going through the motions on the few days I can do anything or try to care about that.

Oh, I have psoriasis now.  It's red, itchy, and scaly.  My hands shed skin regularly like a snake.  It's gross.  I am fortunate it's mostly contained to the elbows and hands at the moment.  Sometimes a knee or ankle will break out.  I am on methotrexate now.  Trying to get a light box for light therapy.  Waiting on insurance to decide that.  Great news about methotrexate, it's a chemo-type drug so my hair, my luckily incredibly thick, enough hair for multiple people, is falling out.  I'm not too vain about my hair and my experience with meds that cause hair loss (Depakote, I think it was) is that it will take many, many months before it's noticeable, but it's bothersome as heck to have handfuls of hair in my sink and shower daily.  Well, not that I manage to shower daily.  It's too big a chore and painful on my head and skin at times.  No worries, I take care of things before too much grossness sets in.  But I hate the hair just falling out on my shirt and feeling like a bug crawling down my arm or on my back regularly.  Ick.  I just want to shave it.  My husband never tells me what to do with my hair, (lucky for him, I doubt I'd listen anyway) but I am sure shaving it voluntarily might be a stretch too far, even for him.

BTW, my long term therapist retired.  That sucked.  I thought it'd be worse, but I am happy for him.  For his sake, he needed it.  But now I am trying to get a new therapist adjusted to all things me.  I forgot how hard that was, especially when you are too sick to make most of your appointments.  I don't trust therapists right away.  I've found myself hospitalized before because of that.  I mentioned some of these feelings to him at my last appointment, only to be told that maybe I should go to a hospital.  I haven't been back.  I will go back.  I just have to make him understand that I have a dark sense of humor about life or death and if I go to a hospital every time I feel this way, I might as well set up residence there.  I don't need to be told to go to a hospital. I need to be able to talk this through without people overreacting.  I need to be able to vent, cry, tell someone that death seems better than this, with them still understanding that there are people and things I love, I adore even, and I am trying with all my might never to do anything to hurt them or complicate their lives.

If this is published, which I haven't decided on yet, it's going to scare some folks I am sure. My mom and aunt are going to want to move in and think I should never ever be alone. Dad too. Maybe my brother. Nope. That's not what I need.  I just need to get this out, send it into the ether somewhere, and hopefully be able to breathe and dampen the storm raging in my brain a bit.

Don't worry, if you see me, I'll do my best to smile and be happy and be the person you expect to see.  Is that good or bad?  Is it being true to me, or protective of me, or protective of you, or just a fake version because it's who I want you to think I am? I never know and almost 20 years of therapy hasn't helped me figure it out.  When my therapist retired I bought him something that said "I'm a therapist, not a magician!" And it's true. Therapy is good and helpful and I've always said I recommend some therapy and prozac to just about everyone I know, but they can't crack my head open and clean out the bad stuff and feed the good.  They can't crack my head open to even see the good and bad. It all depends on me really, and I know it doesn't help that I don't trust therapists and doctors right away.  They have a lot of power over your life.  As I said I've been hospitalized before for sharing too much with a doctor who didn't understand me yet.

At this point I am just rambling and I am going to stop.  Writing is cathartic.  If you read this, you can know where I am, and what I am feeling, but don't add a lot of additional worry to yourself.  I am not at risk. I just need to not have this inside me.  So now it's out there, where ever the Interwebs takes it.