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.


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Tracking where my pain patches are going

For over a year now, I think, I’ve been using the Butrans pain patch as part of my regular prescriptions. It has been life changing, literally. You apply/reapply this patch once a week. It stays there. You can get it sort of wet with few issues. I try to keep mine out of direct water but that can be difficult.

From the manufacturer’s website:

BUTRANS should be applied to the upper outer arm, upper chest, upper back, or the side of the chest (See Figure A). These 4 sites (located on both sides of the body) provide 8 possible BUTRANS application sites.

Personally, for me, I have to focus on my arms and back. I question if they did much work for locations on women, because breasts. Oh noes! Anyways, that’s another topic.

Because you aren’t supposed to “re-use” a site in less than 3 weeks I made this tracker or journal because it’s otherwise impossible to remember. When I was updating it again, I thought I’d share it. I actually type up the specific dates I’m to change my patch so since I change it every Monday night, the column on the left will include the dates of every Monday for many months. The left and right location columns are so that only have to write down “shoulder” or “back” in either column. It’s a little easier. I added a notes section in case you want to be able to note site reactions.

If you so choose, you can print this out or save it. (I’ve never shared a public Google doc. so I’m assuming you can save it for yourself.)

Here’s the link to the tracker.

Whirlwind

It’s been a four day week (here in the states where Independence Day was Monday) and it’s been an absolute whirlwind of doctor waiting rooms, exam rooms, traffic lights, grocery and pharmacy. On top of that, trying to stay out of the heat, and deal with new and different types of pain in new and different types of places. Like eye pain and chest pain. Not fun. Extra phone calls have been necessary too.

Prescription change I need to call my immunologist about Monday. Another new doctor I need to make an appointment with. I have to make sure that this is “just” my asthma no longer well controlled. You know, just asthma. My immune system is totally not doing its job right now.

If I was “normal” I’d get drunk tonight but that won’t help anything. I’d feel worse in the morning, so much worse and if I was really unlucky I’d end up with a migraine or something comparable. Three doctor appointments this week, all three ran late. I have three more doctor appointments next week.

Oh yea and we won’t even talk about the prednisone taper. At least it’s only five days. I am in such desperate need for some kind of fun random thing. A small surprise, or an afternoon spent somewhere new or a kitten. A kitten would help!

My Vitamin D levels

Last summer my regular doctor – per my request – checked my vitamin levels and found I’m low on vitamin D. Really common vitamin D deficiency symptoms include fatigue and joint pain. These symptoms are hard to separate from fibromyalgia. At that time I increased my vitamin D supplement from 1000 to 2000 units a day. (I also take calcium and magnesium regularly.)

Fast forward to after Daylight Saving Time and the holidays and my pain levels had gone back up and my energy levels had gone back down. Per my request, this time my rheumatologist checked my vitamin D levels. LOW! She gave me a prescription for a weekly dose of 50,000 units. (Unfortunately the pills also have artificial colors which is not good for my low histamine diet but I figure once a week for medicine could be worse.)

I’m two days past the second weekly dose and I’m definitely feeling a difference. I have more brain and less pain. Less fatigue, less cloudiness. This is on top of the 2000 units/daily…. It seems to be working.

Low vitamin D is an easy fix and you don’t need to have a chronic illness to have problems with low vitamin D. I’m lead to believe (I say it this way because I haven’t researched it myself.) that some people just don’t process/absorb vitamin D all that well. This has been a reminder that sometimes the problem can actually be fixed AND easily. It’s such a relief!

I’m also glad this got figured out before the neurologist appointment so I can already know about it.

Acceptance

Accepting the reason you haven’t felt yourself is because you have a chronic illness there is no cure for is…. Difficult.

I’m still working on accepting that I have fibromyalgia and will for the rest of my life. Though I think I’ll start hoping for a miracle cure in the next 20 years.

This last week or so has been full of realizations. All different kinds. I’ve cried a few times too.

1. If I’m having a good day I shouldn’t procrastinate.
2. Now I know why I stopped eating tomato soup.
3. Now I know why I always need to shower after a haircut.
4. It’s ok to admit you’re in pain.
5. Admitting you’re in pain is easier than trying to ignore it.

I’m trying really hard to start good habits now…. And not feel guilty for being horrible to be around cause I wasn’t well before.