A Head Full of Pain

On the Wednesday after Labor Day, I got up and got ready for work. Jeremy had already left to workout, so I had a fairly silent preparation. I thought my foggy head was just from it being 5am and the remnants of a bad headache I had had the day before. As I walked out the door to get to the car, I was reminded that sometimes headaches don’t just go away; they erupt.

I sat down in a lawn chair we have just outside the doors and the world spun. My headache had morphed into a migraine. Now, I don’t get migraines extremely often, but when I do, they are not usually put at bay by a mere Excedrin Migraine, which I did take immediately hoping that it would put me back on my feet. I ended up having my hopes dashed an hour later and informing my employer that I would not be going to work that day. I then crawled back into bed and slept for most of the rest of the day.

Knowing what a migraine feels like often gives me a small bit of insight into how Jeremy and others with bipolar and borderline personality disorders must feel sometimes. I’m lucky; migraines and severe headaches are accepted illnesses and I can at least get some sympathy from people.

There’s always someone that doesn’t get it, though. Where they get “We all feel sad sometimes” or “I have a hard time relating to people sometimes too”, people with migraines hear “Yeah, I get headaches all the time.” Note: Bipolar Depression  and Borderline Personality Disorder are not the same as sadness, just as headaches are not the same as migraines.

Let me show you a physical example: You have been reading my blog. I assume that most of you are reading with a fair amount of ease, maybe with glasses, but for the most part, it’s comprehensible. Now, look at this: 785a97667c645119a46dc4911af7088f--migraines-quotes-chronic-migraine-quotes

Do you see the difference now? And this examples is if the migraine is a minor one. When mine are severe, the center of my vision is entirely fogged out.

Years ago, I found a video that helped me understand a little bit of what Jeremy goes through. When I showed him the video, he told me that it was the closest he’d seen to capturing how he feels and it’s still a tad off the mark. Check it out here: What it Feels like to Have Borderline Personality Disorder.

I didn’t really get it until I watched this. Then, I went on a YouTube binge to try to understand, to try to find treatments that might help, and to reach out to those that I finally felt that I might understand a little better. I got it now that his outbursts, mood swings, and self-deprecation were just an outward expression of his head full of pain. My outward expression was sleeping, dimming the lights, and putting on my fuzzy sweatshirt. On days when his illness was taking hold, he became sullen, lost control of his voice inflection, and was unable to sit for more than 5 minutes. When mine is bad, I can’t get out of bed, cry a lot, and ask him to put on headphones instead of sharing his videos.

Either way, invisible illnesses are harder than they look. Those of  us that have them often fill ourselves with pills to be able to make it through a day at work (as I am doing today, since the remnants of my reasons for staying home are sticking around today). We may take longer breaks than others. We may need more praise and motivation speeches. We don’t want pity and we might just want you to listen for a little bit when we’re tired of explaining that our bodies and brains are rebelling against our intentions. Thank you to those that try. Thank you for reading this post, whether you’re struggling with it or it comes easy to you. I know better than many how hard reading can be some days. Health and happiness to you all; we’ll see you on the road.

You can’t be Cancer

No one ever tells you that you are pneumonia or cystic fibrosis. You are not rheumatoid arthritis or heart disease. You have diabetes, eczema, PCOS, or a row of stitches.

And for some reason, you are bipolar. You are borderline. You are Schizophrenic, depressed, OCD, or “mentally ill”. Once diagnosed with mental illness, it becomes part of your identity in most circles.

That’s one thing that bothers me in the public eye and I think it’s part of the stigma. When I was first trained as a personal care worker, I was trained that my clients are people first. That means that “He’s a person with autism” was a perfectly acceptable statement in that company; “He’s autistic” wasn’t. It was a model that brought dignity to the people that I was there to help. It allowed this person to decide if they were going to identify themselves as their illness or as something else. With this model, the person with mental illness can be anything they want to be still. If they want to be depressed, they can. Or they can choose to be a ballerina, an artist, or a lump in bed. If they want to be crazy, they can. Or they can choose to identify themselves as a person with mental illness and explain that they’d rather not talk about their diagnoses.

I like this model. I like seeing people be able to identify themselves how they would like to. I especially like it when people choose to identify as other than their illness. It gives us more purpose than to focus on our pain.

Focusing on our pain is happening this week. There’s a lot of reasons that may be throwing our lives into a tailspin. I kind of lied to some of you because of it. I cancelled appointments and shut down friend time because of a “family emergency”. That family emergency was an emotional dysregulation that has turned dangerous.

Recently, there’s been a lot of stress. 2 months ago, we moved into our RV and parked it at a couple of friends’ place. They helped us immensely to improve The Girl Next Door to at least a running status. A few weeks ago, they asked us to leave so that they could better serve their customers, who come to their business at the house. We were in the way, where we never had wanted to be. So, Jeremy fixed the fuel pump and we were on the road within hours of it being fixed. It was 2 days after they asked and way before the date that they had told us we had to be gone. Jeremy’s emotions started to get out of control then: when he took one sentence said as him being “unwanted”.

You see, when Jeremy starts to go away and the monster of his illness comes up, it usually starts to happen the most prevalently when he’s rummenating on something that can easily be misunderstood or taken the wrong way. You didn’t say anything wrong, or even mean. His dysregulated brain latches on to anything it can to torture him. Then, it plays that thing over and over again for over-analysis. He probably won’t say anything about it right away. He knows, logically, that his brain is being a jerk.

Next stress: Jeremy found out that his oldest son was in a hit and run accident 4 MONTHS AGO!! We didn’t know anything about it. He’s an adult and totally free to keep his secrets. What hurt Jeremy the most was that his parents knew about it and kept it from us. While his son wasn’t hurt, it reminds Jeremy of his ignorance of his son because his son chooses to cut us out and use Jeremy’s parents as a shield of sorts from life’s consequences. That hurts Jeremy; it reminds him that his adult child doesn’t trust his reactions. It also reminds Jeremy that his parents are coddling this adult child; that hurts too. Pain like this is a big stressor for any parent.

Jeremy’s younger son came to stay with us from Friday to Monday of the Memorial Day weekend. This may not seem like something out of the ordinary for most of you. However, this child has been dealing with mental health issues of his own. This is the first time in almost a year that he’s been in our house for more than a few hours, much less an overnight. There was anxiety on everyone’s part, Jeremy and his son the most probably. We all want a successful relationship. The trust that was lost last year is slowly rebuilding. I don’t know about them, but I want it to be back, darnit! I’m tired of learning how to forgive and how to renew the relationship. I can only imagine how the two of them feel about it. So, for 4 days, there was the constant stress of being a good parent and learning how to trust and how to earn trust again.

On top of all of this, Jeremy’s doctor changed his meds last week. That means that this week is when we’ll start to see some of the changes that this new dosage should bring about. In the past, on this medicine, there is an initial spike of mental illness activity when there’s a change. Eventually, it evens out and Jeremy is back to himself again. And while we’re in this week and maybe next week, there will be some loss of stability with the change. This will be happening for Jeremy for a long time. He and his doctor started him back on this med back in December. He’s been very slowly and steadily increasing the dosage since then. It’s a hard place to be, the middle of a med change.

Some medicine changes happen very quickly. When Jeremy went off of Lamictal before, it was an instant thing. His doctor told him to discontinue immediately and come in for a consultation. They changed him to Lithium and that was that. Some happen more slowly. Sometimes, finding the right medicine for anything takes forever. Jeremy was on Lithium for 4 months last year. It didn’t help; in fact, it may have made things worse when he was on it. Imagine that happening 2, 3, maybe even 4 times with different medicines. This can be a multi-year process for some.

This week has erupted beyond our normal feeling of “off-balance”. Every day there is usually some uncomfortable feeling of anxiety or neuroses from one or both of us. Usually, we’re able to pull the thought train back to forward and make life work. On a normal week, it’s hard to get day-to-day life finished, but not impossible. The laundry may pile up for a few days, the bills may get paid only after a reminder letter, the dishes look icky for a whole 2 days instead of getting washed daily. It isn’t usually so off that we can’t live.

Over the last month, that hasn’t been the case. We’ve been living on bought meals and restaurants because we don’t have the foresight to make dinner. We’ve been allowing the dishes to overflow the sink. Our laundry took 5 loads the other day and I still have a basket full of dirty. We could really use the help of someone willing to help us organize, get things done, and lift our spirits. Let’s face it, isolation is another side effect of mental illness breaking down. It’s not as simple as just having the people we need in place to help. There’s arranging that needs to be done if those things are going to happen. Neither of us is up to that task. So, this week, it has all come to a head and we’ve had to try to hold the pieces together.

In the end, the month of May was extremely stressful on both of us. Jeremy hasn’t been able to regulate his emotions like he wants to. He doesn’t want to have outbursts and breakdowns. In turn, I respond by pulling inward, letting my self-care go, and riding the depression train. Neither of us wants this; we want to be happy and healthy. We are working together to find a way to make that happen. Hopefully, once we’re through this hard time, we’ll be able to go out and see you on the road again.