You’ve read a lot about me and my fibromyalgia. I’ve tried to share what it’s like to live with a chronic disease that affects my neurological system and by association, affects every part of me at some point or another. This post is not about fibromyalgia. It’s about my Beloved and his chronic disease that affects his entire life. (And mine, by association.)
He doesn’t have fibro. My husband has been diagnosed as Bipolar, Category 1, with OCD; he also has stress anxiety disorder and PTSD (Post Traumatic Stress Disease). He actually got upgraded since his initial diagnosis, several years ago, was Bipolar Category 2, without all the other letters after it. What caused the change? Six years of working for a company that uses the Dorito method of dealing with employees: “Crunch them up, it’s okay, we’ll just get more”. Almost 3 years of working for a manager whose first act upon taking the position was to inform Beloved’s specialty team that “they didn’t belong here” and that she would “shut them down and make them go away”. And she did all she could to kill the team, including lying to her superiors about their performance. She would change the metrics required for their job, even including calls per hour–at an INbound call center. How can you require a certain number of phone calls by your people when that is totally dependent on the clients calling in and there is no way for an agent to make that happen?
An anonymous complaint was filed, citing hostile work environment (duh) and HR sent a representative down from the head office. There was a meeting with the entire team (and NO managers or supervisors) and the HR rep asked what had been going on. When she was told, she wavered between extreme anger and complete disbelief. Beloved was very open and told her all about the problems–but he was having increasing anxiety and fear that the management level would think he had ratted them out–since he had always been very vocal about the problems as they were happening. He was afraid they would retaliate, even though they would have then gotten into trouble–but that wouldn’t have helped him if they had fired him. Hooray for VA, a “right to work” state.
Suffice it to say that in the long run, the negative effects on the team were ameliorated as much as possible, although the team itself was still dissolved. The manager in question was told to resign and every effort was made to keep the team employed, which would not have happened if the complaint had not been filed.
However…that did not help my Beloved. The day after the meeting, he was showered and dressed and ready to leave for work. Stretching his hand out to pick up the car keys, he froze and his hand began to shake. He could not, just could not pick up those keys. He could not return to work and was so overwrought that he was crying and almost hysterical (but in a quiet way, not screaming). He was having a first class anxiety attack.
Now remember, feelings are created by chemicals in your brain. You have no control over what chemicals may flood your synapses at any moment and can only react to the feelings they induce. It’s vital to understand that this is a physical, CHEMICAL process we are talking about. This has NOTHING to do with a person’s character, personality or their “mind”, or how they think. This is just the same thing as the pancreas creating insulin to break down the sugar someone has ingested. It’s a PHYSICAL thing. In this case, his brain was being flooded with feelings of fear, triggering the infamous “fight or flight” mode–but without an apparent reason, it caused essentially an alternating “go-no go” loop in the chemicals which completely shut down his ability to function.
My first act was to calm him as best I could, then call our PCP. I insisted on an appointment that day and they were able to squeeze him in with our alternate physician. He had two more anxiety attacks during the time between the first one and arriving at the doctor’s office that afternoon. He was talking fast but not making much sense, trying to describe what was going on but it was changing so fast that he couldn’t keep up. It’s a bipolar condition known as “mixed state”–when you are manic, or energized, enough to DO things, but depressed enough that you lack normal inhibitions and your impulse control is nil. In other words, this is the mental state of the crazed gunman, sitting up in a bell tower, shooting at the pedestrians below. NOT good at all.
I could see the doctor subconsciously backing up until she was plastered to the wall, watching him with wide eyes. I didn’t think he was dangerous, but he wouldn’t shut up. He was essentially bombarding us with words. “It’s called Xanax,” she said. And wrote him a prescription to cover him over the weekend and then Monday, we’d come back to see our main physician. We went immediately to the pharmacy and filled the script–and he took one. It works, I will say that. It works almost immediately but the effects are temporary–it also leaves the body rather quickly. One pill was good for about 5-6 hours, and then he’d need to take another one. On the other hand, his blood pressure on Friday was approaching the stroke level. On Monday…the lowest it had ever been since he had started seeing the doctor, almost 10 years ago. So Xanax is a wonderful thing.
We come back and talk to the doctor…who again, is backing up and watching Beloved very carefully. And he is obviously working up to saying something to us that he’s not sure how it will be taken–he wants Beloved to voluntarily enter a mental health institution. You know, the loony bin. I felt so relieved, because I had been trying to figure out how to tell my dearest husband that I was going to take him to the loony bin–even before the doctor said he needed it. I knew that he was beyond my ability to help and that the help he required was going to require hospitalization. He agreed. SUCH relief. Beloved is a SMART man and he also realized that his condition was beyond a few little pills and a couple of days of from work.
He was terrified of being admitted into a psychiatric unit without his consent–but going on his own made the difference and so he would do it. He asked the doctor when…who replied, “Right now. Leave here and go. Your choices are Fairfax or UVA.” and I told him that since they were about the same distance from our home, and the ride to UVA was prettier, we’d go there. And so we did. The doctors there agreed that he needed hospitalization–but with all the cuts to mental health budgets, their ward had gone from 40 beds to 23 and they didn’t have room for him. It took all of her 8 hour shift for the social worker to finally find a bed–in Salem, down near Staunton. A four hour drive for us. Which worked out because it meant that I would not try to drive down to see him every day.
He stayed for 5 days–which was actually 2 days more than the usual patient. They were afraid that when he got out, he would go kill his boss (and as the source for all his anguish, a not unreasonable thought). He willingly attended every group meeting, taking part and actually helping some of his peers with fresh insight into their own issues. Like any other problem he’s had, he attacked every aspect of it that he could, finding out what he didn’t know and then arranging it into a comprehensive picture in order to understand and deal with this.
We had some pretty major discussions about the fact that his problem IS a chemical one, not a personality flaw or some defect in who he is. It’s no different than treating a diabetic with insulin and should carry that much stigma (in other words, no stigma at all). Unfortunately, mental disease/mental health is NOT treated the same as an obvious physical illness or injury. And doubly unfortunate, his mother believes the stigma and thinks his problem is…well, all in his head. It is, but not the way she sees it.
Beloved is also fighting the fact that he had years of thinking the psychiatry and mental illness are all bullshit. Now, faced with the reality of the condition of his mind and the problems that he is having because of the incorrect chemistry, he’s having to revise his opinion and try not to let his mother overwhelm him with her negativity. He is learning how to explain what’s wrong in terms that really bring home that fact that this IS a physical problem and that he can’t just “think” it away. He’s also becoming angry at the lack of sufficient and adequate care for those who suffer from mental illness and disease. It’s a nationwide problem, so even leaving VA to find some place else that has care would not work.
He has had to accept the idea that he began to have this disease when he was a teenager. Well, teens are moody, and they switch moods fast, so who is going to notice bipolar symptoms? Most diagnoses are made when the person is in their early 30’s–just like Beloved. He has been just below the “zero line” for general mood most of his life–that means that he’s sort of depressed without being clinically depressed. Or to explain it better, he told me that other people came to him to solve their problems, and he never got flustered or upset and he could help them. I pointed out that he didn’t have the energy to get angry about it, so yes, he was a rock of salvation simply because he lacked the energy (better mood) to be anything else. Oops. Yeah, that would be about it.
He’s having to relearn everything, go back over everything that has happened to him and look at it through the filters of proper medication, rather than through bipolar disease. Like the scene in “Mr. and Mrs. Smith” when they find out each is an assassin and he tells her, “We’re going to have to have every conversation we’ve ever had, again.” Like going through life with bad eyesight, learning about the world completely out of focus and then one day, you get glasses–or lasix–and suddenly, it’s all in focus and looks completely different than you had thought.
It is, simply put, a life changing event. To be bipolar and not properly treated, to have accommodations and shortcuts that are a direct result of having to deal with a world that’s just not quite in focus….and then to suddenly have it go into focus and have to start over. Add the stress anxiety and the PTSD to this and no wonder the man has crying jags. I would, too. It’s overwhelming all by itself, to deal with all this chemistry, feeling like your brain is not your own. Now add the worry of money and concern for your spouse who also has health issues…and it’s a major cluster fuck, everything is out of control and you’re a person who likes to have things under control. Oh dear.
And where does this leave me? Because that’s really what this blog is about. It’s not just about my Beloved, it’s about my life with my Beloved. It’s how he and I live, what we do together and how we fight the battles we are facing. Bad enough to have to fight fibromyalgia. Worse yet to have to fight it while learning how to live with someone who has a brain disease that causes erratic behavior. He also struggles with long term, unresolved anger–which can flare up for no apparent reason. His disease MUST always be on my mind, constantly figured into any interaction I am going to have with him. He is amazingly aware of how his mind works and is very adept at explaining the shifting moods and his actions, even if he cannot control what is actually happening. He can, and does, make every effort to be pleasant and calm, even when he is not feeling that way. He reassures me that I have not caused the anger or the unhappiness and then we just deal with the feelings.
Our doctor had told Beloved that he has “used up all the ability to handle stress for his lifetime” and we are coming to believe that is so. As long as there is no stress, no palpable anxiety, no demands on his damaged psyche…he manages fine. He is not handicapped, not unable to care for himself or to participate in Facebook conversations. But he is finding that he prefers to NOT go out without me and having to do so makes him nervous and upset. And then there’s money…the root of all evil and a major source of stress–when you don’t know if you’re going to have any, you get a little wacky. No one would argue with that–but it is a tiger that has sunk its teeth into his leg and won’t let go. It’s a boulder, crushing down on his body and he can’t get out from under it. It is unrelenting and unbearable–and he’s trying to deal with it even as he does all the other things he needs to do to heal the wounds caused by the imbalance in his brain’s chemistry.
He sleeps a lot. Sleep resets the brain chemistry and forestalls some of the swinging that bipolar causes. Even on the correct medications, at about the correct dosages, he is still having episodes of mixed state. He cries easily and then despises himself for “being a baby” even though the tears are washing toxins out of the system. He needs to cry, there’s so many reasons for sadness that makes tears appropriate, even necessary. He needs to release that anger as well but finding an appropriate way to safely vent it is harder.
I’m learning how to recognize the bad moods (the mixed state or rapid swinging from manic to depressed and back again). I remind him to take his medications and I don’t argue when he supplements that by self-medicating with alcohol or tobacco. I leave him alone when he’s working out anger or just a bad mood (chemicals, remember?) and I am always there when he’s ready to interact with me again. He used to be a call center agent, on the phone all day long talking to people. He now has anxiety about even touching the phone, even when it’s his friends that he would like to talk to…so I handle making calls about this insurance or that medication or paying the bills. He has to take an anti-anxiety pill and prepare himself to actually make the calls that only he can make. Stupid thing, he can’t deal with the phone–such a common thing, everyone has one, everyone is talking or texting on it all the time…and it makes him unable to function.
This is all so unfair to him, so completely unfair. He worked hard, he did his best, he excelled at his job and he was viewed as the leader for the team because of that ability. He is a good man, treats people well, tries to always do the right thing even if it costs him time, money or effort. BUT He’s got this disease, a mental disease, that has stripped him of his dignity by making him unable to do his job and therefore not able to support his wife. It has made him look like a slacker and lazy good-for-nothing to his parents (mostly his mother) because it’s all in his head. It doesn’t help that he also thinks that if he just straightens up, puts his shoulders back and forges onward, it will all go away and he’ll be fine again…even though he knows that it won’t. It’s just the feeling that he can out-think it, can force it into some box in the back of his mind, lock it up and never have to deal with it again. Did I mention that he has a disease that affects his brain chemistry, which includes feelings? I think what got him to actually seek help was the realization that he could become that crazy gunman, up in the bell tower…very easily and with almost no effort because of the chemistry in his brain and how that makes him feel.
We’ve both acknowledged that without the other, we would each have sought the ultimate solution to the pain and unyielding stress of life–in other words, suicidal ideation. We’ve thought and even to a certain extent, planned to commit suicide. But we will not leave each other, and so we cling together, trying to work our way out of the brambles and onto the path. A lot of the problems will disappear with the onset of a steady income, at least we hope so.
So I deal with the fibro and I deal with a husband who I call a loony to his face. As far as we’re concerned, his mental illness is just part of the reality of our life and it has long term effects that he is just now realizing. He cannot go back to work within the skill set he has gained over the past 20 years. If he is to have a job, it must not involve phones, or people calling in, or anything that can cause him stress. That pretty much cuts out any job. Which is why we’re fighting for the SSDI for both of us. He needs time to do some healing, to learn how to be “normal”, if there is such a thing and if the medications really do get him to that level–it’s so subjective.
There’s a LOT of stuff that doesn’t get done in the house because I cannot do it and he doesn’t even consider that it needs to be done. I don’t know how much of that is being male (sorry, men, but you are not known as good housekeepers) and how much is the bipolar disease. We need to get some of it done because we need to have a house that is cleaner and neater–so he has finally reached the point where he’s willing to get rid of some of the stuff he’s been dragging around behind him for years. Me, too. Truthfully, at this point, I’m just about ready to throw it all away without even opening the boxes if I can get my house in order.
So we’re both learning about living with mental illness, the stigma attached to it and the serious lack of proper care at all levels for those who are mentally ill. Finding the right doctors for him is a real challenge–his psychiatrist was down in Fishersville, a 2 hour drive–in each direction. Four hours in the car for 10 minutes in this man’s office and in the long run, he was not worth the effort. Without health insurance, we will have to take what we can get in the free clinic, since as my grandmother would tell you, “beggars can’t be choosers”. It’s a real lesson in humility–and also in hope, as we figure out what life is like for a bipolar man and a woman with fibromyalgia who love each other regardless.