dSavannahRambles

dSavannah note: Here is the second installment in my “Publish-A-Blog-Post-The-15th-of-Every-Month-In-2019” Goal. THANK YOU! for reading. There are tons of wonderful blogs out there, and I appreciate everyone who reads mine. (Oh, and a million thank yous to the people who sent me things off my wishlist last month.)

The good news (for me regarding meeting that goal) is that I have a bunch of drafts in my WordPress account (about 30?), and a few more in my email (no idea on the number), so I just had to go through the drafts and pick one that spoke to me (and was more than just a few random sentences).

This is one of those posts. Apparently, I started this last January (2018), but the message are still relevant.

The bad news (for me) is that it’s already February 5, and so I can’t take my sweet time (okay, it’s more labored than sweet) to finish this. Ten days may seem like plenty of time (and in my heady days of being healthy, it was more than enough!), but these days, when I’ve spent 11 of the last 14 days not being able to do much more than lay in bed… and when I can sometimes only write a sentence or two at a time, well, it’s a bit of pressure.

While I sat in bed and worked on this post on Wed (2/14), both cats came and snuggled on my legs. Piper (the tabby) is on top, and Cricket (the calico) is on the bottom.

And now it’s February 12, and I have been fighting a giant headache for ages, and I learned some bad news about someone, news that has slightly derailed me. Plus, every time I think I have something to add to this post, and I sit at my computer, the thought flies away into the ether…

And now it’s February 14, and I feel there’s so much I should add to this post, thoughts that might help people understand, or not feel as alone, or give them the courage to speak up, but I’ve been bedbound all day, and my head hurts, and I’m woozy…

So I’ve gotten my laptop and I’m sitting in bed to work on this, although doing so causes me pain: the weight of the computer on my legs hurts, and the angle I have to sit/lay to type isn’t really comfortable. (But nevertheless, I persist… for a little while, until my neck and legs are both screaming in pain, and my brain is flat-out refusing to process words anymore…)

And now it’s February 15, and I’m trying to hurry up and finish so I can hit the Publish button… But my stupid bladder is in overdrive, so (what feels like) every five minutes, I have to get up, take off my back brace, and go pee; and my sensory sensitivities are high, so I’m sitting in the dark with my headphones on because even the sound of my dog walking and my fingers on the keyboard is sending me into orbit. And as a fun added bonus, my temperature dysregulation is also in overdrive, so my hands are freezing while simultaneously sweating, and I keep going from hot to cold to hot to cold…

So, forgive me if anything in the below makes zero sense, or if there are typos (my brain just doesn’t see them anymore), or if it’s incomplete. (And I’m pretty certain that I’ve forgotten things I wanted to include, even though I’m already at almost 2,500 words!) (The original post was only 425 words, so I’ve expanded it quite a bit! Apologies for the verbosity – but you’ve been warned!)

PS. As for my goal to write in my Gratitude Journal every day, so far, yes, I’ve done it. Even on days when it’s been very bleak and hard and I’ve felt extra pain and extra exhaustion, I’ve somehow managed to find things to be grateful for, even if it’s just my icepack or the pen I’m writing with. Once or twice I’ve even had to write up the side of the page because I ran out of room.

Living with Depression

dSavannah note: Trigger warning. Some of what I write could be upsetting, and I would never want to – even unknowingly – cause anyone pain. And again, this has turned into quite the long post.

I’m in quite a few groups on Facebook (thank goodness for my imaginary friends on the interwebs!), and I wrote (a small) part of this in response to a plea for help, and thought, “hey, I sound kind of wise, I should use this in a blog post”.

And yes, I have depression, and an official diagnosis thereof. I’ve been living with it since I was about 10 or 11 years old, before I knew what the word was, or that feeling that way wasn’t exactly normal. I’ve written about it before (especially this short bit I wrote in the post D is for…depression for the #AtoZchallenge2016), but for some reason I feel I need to write about it again.

As I was wandering around the internet seeking inspiration on expanding on what I’d already written, I came across the site for the National Institute of Mental Health. In the section devoted to depression, it says that risk factors for having depression include:

• Personal or family history of depression
• Major life changes, trauma, or stress
• Certain physical illnesses and medications

Which made me laugh-sob, because check, check, check: all three apply to me. There’s history of mental illnesses on both sides of my family; my childhood was practically nothing but trauma (and as I wrote in a previous blog post, when a therapist went through a list of ACEs, or Adverse Childhood Experiences, mine numbered over 20); and I’ve suffered various ailments since I was young, from TMJD to scoliosis to migraines, and now I have Myalgic Encephalomyelitis (ME/cfs), along with 50 other diagnoses.

Depression is real, y’all

Despite overwhelming medical evidence, some people don’t “believe” in depression. In fact, because of this, I didn’t get help for my depression until I was 32. My college offered counseling services, but thanks to the ingrained family edict not to talk about how you feel or anything happening at home, it never occurred to me to seek it.

Then, after college, when I would suggest I needed help or medication or therapy, my ex-husband always poo-poohed the idea. Until I became seriously suicidal in 2003, and then had a breakdown where I couldn’t get out of bed for three days. Or do anything. All I remember from that time is darkness, and a crushing weight on my very soul. (I don’t even remember if I called in to work to say I was sick.)

I finally got out of bed, and tentatively re-entered the world. I called a friend I knew who was in therapy, asked who she was seeing, and made an appointment. I saw a psychiatrist, who diagnosed me with depression and prescribed an anti-depressant, and I saw a therapist, and between the two of them, it saved my life.

So again I say, depression is real, it exists, and it sucks. Depression is not just being sad (so saying “I get sad, too” to someone who tells you that they’re depressed is hurtful and downright insulting; it’s like saying “I stubbed my toe once” to someone who broke a leg).

Also, depression lies. It tells us that we are stupid, and worthless, and unlovable, and all kinds of other horrible things. It tells us we deserve to be punished (even if we don’t know for what, but we must have done something wrong), that we don’t deserve love, that we’re irrevocably broken, that we’re a burden, that there’s no point in anything.

Depression is NOT a character flaw, or a moral failing. It can be caused by circumstance, it can be caused by trauma, it can be caused by your brain not producing the proper chemicals. Whatever the reason, it is NOT YOUR FAULT.

Society seems to frown on expressing or feeling anything negative. Ever. Sometimes that means we feel wrong for doing so, even though getting upset or sad or angry is a normal, human reaction to negative experiences. Of course, having depression and/or other mental illnesses means sometimes our responses can be skewed and overblown – or it might the right response, but seems worse due to the depression.

Depression is not a one-off; it’s a constant battle for many people. (Including me.) It will never go away. Ever. Sometimes it’s quiet, and sometimes I can soothe it away, but it’s always there, lurking in the background.

This came up in my Facebook memories today. It’s so true. (Allison writes under the name AJ Aalto (website; Facebook). Check out her work!)

Depression doesn’t always make sense. You might have everything going perfect in your life, and be gripped by depression. You might have just gotten a big promotion, or bought a new car, or just came back from a fabulous once-in-a-lifetime vacation, and depression can sneak up on you. Depression does not discriminate – it visits the rich and famous, the poor and unknown, etc. etc.

Another thing I want to point out that gets my hackles raised in a big way: many people seem to think that people with chronic illness are just depressed, or that the illness is “all in their heads”, i.e. that it’s imaginary and you’re stupid for feeling that way. Having a medical illness can cause depression, not necessarily the other way around.

And finally, everyone experiences depression differently. My depression may not look like your depression, but it doesn’t mean either of ours is less valid or real. To quote Michael J. Fox, as he writes in his autobiography Always Looking Up, “You don’t know my devil”. In other words, your devil is not my devil. But they are both valid and real.

Professional Help

So, how can we cope with this raging, liar of a monster that lives in our brains? How did I – do I – survive it?

There is a stigma against seeing a doctor or therapist for mental health issues, yet many many people will flippantly tell you to “just get help”.

This tweet is so incredibly true. When I am depressed, I shut down. I close up. I stop communicating.

What those same people don’t take into consideration is that there are many many barriers to getting that help, including, as the tweet pictured here says, the inability to reach out.

From my own life, and I have no idea how, I managed to reach out to my friend and do the hard work of calling and making appointments with the doctor and the therapist.

And when I first got diagnosed and started going to therapy, I had a good job and the therapist took my insurance. My supervisors didn’t mind me leaving work early to go to appointments, and I had nary a thought about driving the 30-40 minutes to get to her office, or the 30-40 minutes to get home; it was no big deal. And the therapist I saw was exactly right for me.

These days, I have no job, and I can only see doctors within 2 to 3 miles of my house (I can no longer drive further than that because of various side effects and symptoms of my illnesses, and some days can’t even do that), and need to be able to take myself if my husband has to go out of town. I also can only see therapists who take his insurance, which is a very short list.

I have gone to three of them – one who basically told me “everything will work out and will be fine”, which cannot be truly called therapy and was not helpful at all; one who I saw for a year but started restricting how many times I could see her – at a time when the medications I was taking started to fail and I was suicidal!, which she missed entirely; and a third who implied I should be able to imagine my pain away (which I wrote about last January in the post imagining pain away (or, it don’t work that way)).

To add to my stress, the person who manages my mental health medications is going to be leaving the place she currently works (and I don’t blame her one bit), but that means I’ll have to do the onerous search for someone new, as my primary doctor has already stated I’ll need to find another doctor to prescribe those meds.

All of these experiences could easily keep me from seeking additional help (and honestly, it sort of has; I just don’t have the energy right now to try to find someone else and go through it all again, and thankfully I am [mostly] mentally stable and have been for about a year).

Those are all current barriers I experience, but they are relatively mild to those experienced by some people – imagine how impossible it must be for those who are so ill they cannot leave the house, someone who has no family to take care of them, who has no insurance, and no job or disability benefits. Or someone desperately trying to get help, but are put on a lengthy waiting list for services or have to fight with their GP for a referral. What are they supposed to do?

Although, having said all that, I urge you, if you need professional help, if you need someone to talk to in order to sort out all your feelings and experiences and traumas, don’t give up. It’s difficult, and can be disheartening, but you’re worth the effort.

Therapy – with the right person – can help you make sense of your feelings and things you’ve gone through. It can guide you to new ways of seeing things, help you recognize when something is wrong, and – most importantly – help you develop coping skills to deal with it all.

Medication

Art created by Megan Fabbri.

Just as there is a stigma against seeing a doctor for mental health issues, so is there a stigma against taking medication for it. So many people say “stop taking that poison” and recommend that you simply take a walk or exercise. What those people don’t realize is that you may wish with all your heart to take a walk, and know it will make you feel better, but depression keeps you from doing so.

When I first got on medication, it was a complete life-changer, and I will say without hesitation that it saved my life – and continues to do so. I was on one anti-depressant for a few years, and then (with my doctor’s help), I weaned off of them because I felt better and thought I didn’t need them anymore.

I was wrong.

A little while later, I felt myself slipping further and further into the darkness, so I went to my doctor and he prescribed an anti-depressant. He also told me that it was likely I would have to take them for the rest of my life.

And you know what? That’s okay. I’m not ashamed I take them, and no one should be.

As the art above says, “If you can’t make your own neurotransmitters, store bought is fine.”

I’m not sure who originally wrote that statement, but I found a blog post on the site Not Your Neurotypicals from October 2016 that spells out this sentiment so well. It points out that if your body can’t make insulin or beta blockers, no one blinks an eye when you take them. I urge you to read the blog post, because it so perfectly describes why we need to have that medication, and how it helps. (Sadly, it doesn’t look like the blog or their Facebook page has been updated since September 2017. I sincerely hope they are okay.)

Just as everyone’s depression is different, their reactions to medications is different. Some people don’t do well on them, and sometimes they stop working. I’m now on my third “cocktail” of drugs to keep my anxiety and depression under control. (I suspect that I’ll need to tweak it in the future.)

As I said above, there is no shame in taking medication. It makes me sad when people don’t take medication that can improve their quality of life because they are afraid of the stigma, or of getting addicted, or any other of the thousand reasons why people don’t do so. The alternative is much, much worse. (And, hello? We’re addicted to air, aren’t we?!?!)

Some Coping Skills

(Whew. I’ve made it to the last section at 5:09pm on Friday, Feb 15, so this is likely going to be the most incoherent of this whole post. But maybe not. I could be imagining that the ones above are “fine”.)

Unfortunately, even if you see a therapist regularly and take medications, you probably need some coping skills to use in your daily life. These are some that have helped me, and may or may not be of use to you too.

Depression is known by many as “the black dog” (a phrase used by Winston Churchill), tho lots of people don’t like that because black dogs are nice. Some people name their mental illnesses. For instance, AJ Aalto calls hers ‘brain goblins’, which I personally use a lot, and someone else I know calls it ‘Colin’, but I can’t do that because a college classmate is named that and he’s quite nice as well.

In any event, names are power, and naming your mental illness can help you internalize that having it doesn’t mean you’re a bad person, and that it’s something separate from you. When you’re feeling depressed, you can say “Oh, that darn Jago is acting up again” and work toward feeling better rather than blaming yourself. (If you’re wondering where I got the name “Jago”, I found it via a search just now for “least popular men’s name”, on the page “The most unpopular baby names of 2018“.)

Talking to your depression and/or anxiety can sometimes be helpful as well. For instance, I’ve been known to say “thank you, anxiety, but your worry for me about my next doctor’s appointment is not helping”, and somehow, it calms down. One therapist suggested treating your depression like a small, scared child, and talking to it in gentle tones, telling Jago it will be alright.

I don’t have a photo or tweet for this section, so here’s a photo of the storm on my wedding day (8/8/08), which is a good representation of how depression can feel.

Of course, it’s also good to talk to other people. Find a support group. I’m a member of several great chronic illness support groups online, and quite frankly, I can’t live without them. You may not be able to find one that works for you right away, but keep at it. Or start your own group with some trusted friends where you can all vent and be honest about how you’re feeling.

Write it out. I have a cheap notebook (so I don’t care if it gets damaged; I feel like I should only write “nice” things in “nice” journals/notebooks), and I use magic markers so I can make bold, angry strokes. Sometimes I just write curse words big and angry with a thick marker, over and over. Writing it out, without censorship, or making yourself wrong, or judging yourself, can really help. Doing so allows you to release some of what you are feeling, instead of the thoughts going round and round in your head like a dryer in a laundromat.

As a bonus, you can destroy the pages you’ve written. Rip the pages out of the notebook and rip them into tiny pieces and then throw them away. Or burn them. Whilst screaming and crying. It can be quite cathartic. (Of course, best to do all that somewhere private where friends/family/neighbors don’t become concerned.)

If you decide to save it, you can read it later, and see if how you feel has changed / improved. Sometimes it is a nice boost later to see that things weren’t quite so dire, or they were, and you made it through!

Be gentle with yourself. As I’ve said, often depression makes us feel like horrible people. Instead, we should NOT beat ourselves up over whatever we are feeling. When you tell yourself things like: “Once again, I’ve worked myself up over nothing” (a recent quote from someone in one of my illness groups), you invalidate your feelings and make yourself wrong. Don’t do that, even though it’s sooo sooo sooo difficult not to. It just makes everything worse. Your feelings are valid, even if they aren’t necessarily “true” because Jago is making things out to be worse than they are.

Use online resources. Read other blogs by people with depression, like “Depression and Me: My Story” on the blog Thinking Out Loud. There are lots of sites that have free worksheets or videos. Coincidentally, during the time I’ve been working on this post, I got an email from a new online magazine I just started following, with the article How to really help someone who has depression highlighted. (Obviously, that someone can be yourself.)

Get outside of yourself. Participate in things like the Chronic Warrior Collective, where you swap cards (real mail, y’all!) with other #spoonies.

And that, my friends, is all for now (and probably way more than you needed!). See you next month.

P.P.S. One of my fellow #pwME expressed sadness at not being able to read my last post – a sad symptom of MEcfs is how it can mess with your executive functioning and your ability to process words, light, sounds, noise – so on Feb 8, I recorded myself reading it in two parts and added the audio files. If you’d like to take a listen, click here, scroll to the bottom, and click in the empty black bit on the far left of the audio image. I will try to do the same with this post sometime after I publish (and when I get the energy).

Before you go:

I’ve never had ads on my blog, and never wanted them, but it’s expensive to have a website, what with the domain registration & hosting fees. And I haven’t been able to work in four years, and I get no disability benefits – and my medications alone cost me over $300 a month!

If you found this post useful or inspiring, please consider supporting me and my ramblings:

• with a $3 tip at ko-fi.com/dsavannah
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Your support keeps me going, even in tough times. Thank you for stopping by my blog.

Also, if you would like to help terribly ill #MEcfs patients like me, please consider donating to the Open Medicine Foundation or SolveMECFSInitiative, both of whom focus on research and looking for a cure; or #MEActionNet, an organization that focuses on advocacy. Donate online with a credit card, giftcard, or paypal!