Why we can’t have nice things: Fear and Mental Illness

I started writing this post back in June. Why didn’t I publish it? —

I don’t have the ‘official’ diagnosis for BPD or borderline personality disorder yet. However, from what little I’ve read it explains so much. More things keep ‘clicking’ and if I don’t end up with this diagnosis I’ll be asking the doctor what looks like BPD but isn’t.

Recently, I read this from Psychology Today. It’s about people with BPD fearing what their emotions will do. The article says it better. Then things just clicked. HOLY Fucking SHIT I keep getting answers. This article even potentially explains what happened when my physical health became worse.

I live in fear and I feel like very little is under my control.

Fear that something bad is going to happen. Fear that someone is going to think something bad of me. Fear that something bad is going to happen to a person close to me. Fear that I will upset someone. Fear I will overreact to something small and mundane and not be able to calm down. Fear that something physically is going to happen to me when I’m not at home and I won’t be prepared – like a sudden migraine or an allergic reaction. Fear of getting lost. Fear of what will happen if I end up upset and can’t control it and end up more upset. Fear of losing friends if they _____. Fear of harassment on the Internet. Fear of having to wait 30 minutes or more for a doctor appointment. Some of these fears I’ve been able to logically move past. Some of these fears I think I cope with by just not feeling.

I didn’t realize it was fear until after all my testing for personality disorders and after reading that article. This explains why I find compartmentalizing my emotions so dangerous. If I ‘save it up’ to feel later it will be so much worse, especially because I’m afraid of what will happen. And I’ll forget about it, until it comes back, like because something has triggered an emotion or memory.

Rereading this, most of it seems ridiculous. I’m not actively fearing for my life. I live in a relatively safe area. I isolate myself quite often and literally have less of a chance of being in a dangerous situation. But mental illness is ridiculous. Mental illness is illogical. It’s difficult. I’m going to go out on the metaphorical limb here and assume I was afraid to make these words public, despite the fact that in terms of the Internet in 2018 my blog basically doesn’t exist. Again, mental illness doesn’t make sense.

More logically, I didn’t post this because I’m still waiting to hear back from the doctor in charge of looking at all the testing I did for personality disorders. The initial information I received in early July is that I have depression and anxiety. That’s it. There was something about not exhibiting behavior for BPD. I still have so many questions. But that doesn’t explain so many things. I’ve realized a good chunk of my daily behavior is impulsive. From stress eating almost daily to suddenly getting up in the middle of a TV show because I decided to do something else like go play a game on my computer to deciding to clean out the closet. My impulsive behavior is collecting hundreds of kindle samples and thousands of knitting patterns. Or starting 8 different books before I decide to actually read one. Deciding I need a new pair of shoes today. Then there’s the mood swings and the times where I don’t remember what I did all day, even when I try. It’s not like when you can’t remember what you ate for dinner last night. It’s because there’s a dark hole in my mind instead of memories. I fear something happening that will remind me of a bad experience and then my emotions will stir up – like a sudden summer storm that might spawn a tornado.

And leaving the house. Oh. Leaving the house and being around people is exhausting. Conversations have so many rules to follow. Small talk is tedious. Avoiding people is easier. Driving somewhere is stressful. You can’t trust drivers around you. Most people drive distracted. If I get cut off or something else sudden happens I could spend hours shaking from the jump in my heart rate. Then there’s the physical problems like making sure I have snacks because it’s so hard to find something safe to eat outside of the house. It’s so much easier to stay home, inside, away from everything. Besides, home has netflix and our cats and a supply of chocolate.

Because of my health and my anxiety, I spend all day trying to keep my thoughts, emotions, and impulses under control. I can’t go shopping because I don’t have a job and we have a mortgage. I can’t just go for a walk because it’s summer in Texas and my body doesn’t tolerate heat over like 77 degrees (F). I can’t spend hours in the kitchen baking because I won’t be able to do anything after I’m done – and I don’t know if I’ll be able to clean up everything before it’s time for dinner. I’m jealous of people who can drink alcohol and eat whatever they want. I’ve started to impulsively “break” my diet. I’m gluten intolerant and it clearly still causes problems but I’ve started eating foods with gluten again. Thankfully I’ve been on a high dose of a mood stabilizer for years. I still have mood swings. I’m afraid of the mood swings now. Or something triggering me into feeling overwhelmed by emotion. I’m afraid because every time something happens that’s difficult, it’s harder to calm down afterwards. Harder and harder. And the migraines. Because some things are better I can see how stress triggers the migraines. Last time I had a migraine I lost 5 days. I don’t remember what I did.

I suspect? Assume? I fear?  Probably fear. That when I finally hear back from the doctor who is in charge of the neuro-psychological testing I completed in the end of June and being of July he’s going to tell me I don’t have BPD at the current time because I don’t have the extreme behavior – because I limit and control myself via anxiety and fear. And then that means I’ll have mental illness symptoms that doctors can’t explain on top of my long list of physical symptoms that doctors cannot explain when all I want is help to straighten out my mental health so that maybe just maybe my physical symptoms will calm down too. I’m afraid this doctor does not truly understand what living with chronic illness and chronic pain means.

*scrolls back up*

So I guess I didn’t publish that post because I knew I had a lot more to say and I didn’t want to face it. (And if you read the entirety of this blog post hopefully it wasn’t as painful as I imagine it to be. You deserve a cookie, or a strong drink, or some ice cream. (Also, I’m afraid to reread this for edits or I might not publish it.))

My mind is a place I don’t want to be and I don’t know what to do about it. I think that means I don’t know who I am either. 

And not remembering how I feel at home when I can’t bear to leave the house when I do actually leave the house to see doctors isn’t helping.


Image courtesy of Inspiro bot. If you aren’t familiar, you should be. https://www.instagram.com/inspirobot.me/ or http://inspirobot.me/

Looking forward and being sick

Or, why I’ve decided to apply for disability.

My health has improved in the past few months, since it started getting worse(r) at the beginning of the year. Much of my week to week, or month to month, life often seems to be taking two steps forward and one step back. (Or one step forward and two steps back.) It’s depressing and frustrating.

In the last month or so I reached an important milestone. I choose to think of it as a milestone. I stopped looking at how I feel compared to how I felt. (I need to make sure my neurologist understand this.) Instead, I’ve started (trying) to look forward. How do I feel compared to how I should feel to be able to do things like work full time, write a book, work in the yard again, or volunteer again.

Ignoring, for a moment, the unknown aspect of all my multiple health problems, I think it will be years before I can attempt many things in life that I used to take for granted — without much planning, preparation, and expectations of doing nothing but resting before or after. The unknown aspect of my health problems means that I don’t know if I’ll be staying in bed – or going back to bed – tomorrow until tomorrow.

The goal that I put first, after taking care of myself, is being able to write a book AND publish it. This is something I can do on my own schedule, around doctor appointments, migraines, and naps. This is not something that pays bills. If I was to go back to work full time, I’d lose access to doctors because I wouldn’t have the time to get to appointments. I’d also lose access to hobbies and increase my stress. All of these things would negatively affect my health by causing more issues with pain and fatigue – among other things. More pain means (more) narcotics. It would also mean I’m more likely to get sick. Getting sick means more doctor appointments and more medicine.

Regardless of what my long term goals happen to be, I now understand that I have to think in terms of years. Half a year, a whole year, two years, etc. Getting sick happened over years, not weeks or months. It’s going to take longer than that to improve my endurance and find my new normal. I’ll probably never be like how I was in graduate school. (That was only 3-4 years ago!)

This is not something that pays student loans or doctors or medical bills that are in collections. It all sounds scary, but at least I can look forward and think about the future now without panicking (much).

Labeling the Pain

Monday – 4 days ago – I had my follow up with the rheumatologist. She diagnosed me with fibromyalgia. She also happened to deliver her diagnosis in a way that you might tell your significant other/partner that someone needs to get milk on the next trip to the grocery store. Other than her somewhat – odd – bedside manner – she’s a great doctor. (I finally know how to spell fibromyalgia. I think. I will by the end of this blog post.)

I have taken time off of work because this has rocked my world and I’ve needed time to process….and because I’ve been kicking my caffeine habit. Sidenote: It’s a little weird that I learn about my caffeine intolerance and start working on kicking the caffeine habit BEFORE I find out about the fibromyalgia and that caffeine is bad for fibromyalgia. Anyways. This is day 6 of no caffeine and the second day of not having a migraine because of eliminating the caffeine.

Looking back, I’m not sure when the pain got bad. I feel like I haven’t been myself for most of the year. But there have been a few periods where I was able to catch my breath and try to get back to normal. Looking back at my blog, April was a VERY bad month and I’m pretty sure January was too. I have had a few realizations this week but, before I get to those…. Fibromyalgia sucks. I sure as hell did not seek the diagnosis out. However, it’s not RA, or Lupus, so things could be worse! On top of that, I’m not really surprised by the diagnosis based on my general sensitivities, intolerances and food allergies.

Most importantly, I now have a label for the pain I have been experiencing for I’m not sure how long, probably close to a year. I have a label for the weird feelings or things I’ve been dealing with for over a year. Like, the days when my clothes hurt…. figured it was my allergies. Nope, it’s my brain!

Because, you see, being able to label the pain I’ve been experiencing means that I can acknowledge the pain exists. I can acknowledge the pain is not going anywhere (that sucks yup. But calling yourself weak because you’re in pain other people don’t experience is worse.). I was consciously ignoring the bad feelings and hoping they would go away. I don’t need to do that. Ignoring the pain and hoping it will go away takes way more energy than accepting the pain is there and not going anywhere. Then instead of spending energy wishing it will magically go away? I can work on making it not as bad.

I’ve done a lot of learning this week. Reading The Spoon Theory was life changing. It’s a great way to explain why some days are great and some days are total shit. You don’t get the same number of spoons every day. I shared it with a friend who has RA and she was surprised how well it applied to life. She also shared with me how she copes with pain. Acknowledging the pain exists means you can put it on the back burner and then move on with life. I like her metaphor too.

Building on her metaphor – I think this applies really well to life. Anyone with chronic pain automatically has one less burner to cook dinner with than someone without chronic pain. The severity of the pain experienced is illustrated by how full that pot on the back burner is. Really bad days means that pot is threatening to boil over, even on a simmer, any minute of the day. Good days mean there’s little threat of the pot to boil over since it’s on a simmer. But, like everyone knows, that is open flame, (we have a gas stove), so you still need to be attentive.

Now where was I? Besides distracted?

All of this has helped my sanity, but it’s not enough. Per my rheumatologist’s recommendation, I’m also trying cymbalta. Hopefully it will my brain. Finding this little bit about chronic pain and the brain helped me figure out more too. I’m still trying to figure out how much exercise is enough and how much is too much. I’ve done some reading so I know I need to start slow.

Last night is the first night of sleep I’ve had since I don’t know when where I actually felt like I got a full night of restful sleep. I’m assuming both eliminating caffeine and adding the cymbalta have helped this. Next thing to do is look up sleep stages. I think I learned about them like 8 years in a PSY 101 class. I should have a review.

Besides the exercising and doing some more learning on my own I have to find a support group. Something where I can see other people, not something online.

I will own my health.

Now I’m going to knit something light weight because my hands are tender.