Warning: Long, serious post ahead
As we get ready to leave for Vancouver and the olympics bright ‘n’ early 6:30AM tomorrow morning, I’ve been thinking a lot about how important my hubby’s support has been for me in this past year. It is just in the last year that I was officially diagnosed with dysthemic disorder and chronic fatigue syndrome. I’d figured I had some form of depression for the last couple years, and I’ve been tired all the time and needing WAY more sleep than my peers for…well, I remember someone making a crack in high school, so at least since then. But once I became a “grown up” I just couldn’t manage them anymore. I can’t skip work to get extra sleep. I can’t manage my day so that when I have energy I do tasks which require more thinking and when I don’t or am feeling depressed I do more mindless work. I can’t work on a hard task, and then switch off to an easier task to give my mind and body time to recover, and then go back to another hard task. I don’t have months at a time where my schedule is different to give my body and mind a break from the intense pressure I was putting it under in school, taking 24 credits/semester (a typical load is 12-18) to get 2 degrees in 4 years. Now I have to find some way to work so that I put it under less pressure and I can keep working indefinitely without breaks.
There have been days I’ve had to leave work because I’m so depressed that I cannot bring myself to care enough to do the simplest of tasks. Do you know how frustrating it is to have so little control of your mind and emotions you literally cannot make yourself care? Not only about a job that you have worked for years to get yourself the privilege of doing, about, say, eating. Or getting out of bed. Or saying hello to a friend. Do you know how frustrating it is to watch yourself damage what you have worked so hard for, knowing academically that it is something important to you, but not being able to feel that or care at all that you are damaging it?
There have been days I’ve had to leave work because I’m so tired I am falling asleep while working. I’m talking about the kind of tired where you cannot speak in complete sentences. Where you’ll forget words and not be able to come up with them. Not technical or complicated words like “seismic mass” or “interrogated,” words like “him” or “there.” When you’re too tired to have facial expression. When I will stare at my computer screen, and realize 20 minutes have gone by and I have not even moved the mouse. Do you know how frustrating it is to get a MINIMUM of 8 hours of sleep every night, to spend at least an hour before that resting and not moving, to spend your weekends getting 10-12 hours of sleep every night to catch up, to eat regularly, to take vitamins, and to still with no warning and completely unrelated to the care you’ve been taking of yourself, be overcome by that kind of exhaustion? There are many more days where I haven’t left work, but I have been so tired I have done calculations wrong or set up computer models wrong, and in the following days I then have to deal with catching and correcting all of those mistakes.
Perhaps what is most frustrating about these diseases is that they are invisible. My coworkers do not know that I deal with them. They certainly don’t know that I am technically disabled, and that I have had two doctors offer to support me in getting disability benefits at work. I don’t pursue this because I work at a small company, and that would be a great way to get put at the top of the lay-off list. It may not be legal, but my company is very affected by every single employee, and taking extra benefits would not fly. Add in another invisible disease, social anxiety disorder, and life gets even more fun. I’ve been told at reviews repeatedly that one thing I really need to work on is spending more time socializing with the leaders of my company in the office and at after-work functions. What they don’t understand is that “hanging out” even with friends, which is relaxing for many people and fun for almost everyone else, is extremely draining on me. It takes a lot of energy to keep myself together and not have an anxiety attack even when I’m with a group of friends. Doing so with a group of higher-ups is exhausting. I am on hyper-alert the whole time about how I’m sitting, what I’m saying, how I just laughed, who I looked at, what I’m drinking/eating, my facial expression, who can hear me, who can see me, the location of everyone in the room, and on and on and on. Logically do I know that these are nice people and it doesn’t matter? Of course. But mental illness is not logical.
Through all of this, my husband has been an amazing support. When I was first diagnosed, even though I had assumed I had at least some of these conditions, it was crushing. There is a stigma attached to mental illness, and naming the illnesses, putting that stigma on myself, was upsetting. I came home upset, and he just held me. That was exactly what I needed. As I’ve gone through the past year learning how to deal with these diagnoses, he has been there, to hold me when needed, to tell me it’s not weakness when I needed to hear it, to listen to me crying when I couldn’t hold it together anymore, and most of all, to encourage me to continue taking the steps that are helping me.
Shortly after I was diagnosed, I started paying attention to how our puppy was helping me. He could sense when I was upset, and would come and aggressively lick my face until I started laughing or playing with him. If I was depressed he would stop playing and in very un-puppy like behavior come and settle down next to me, and cuddle me until I felt better. Once my mood lifted, he was back to being a normal puppy. Focusing on him let me forget about the people around me when we were out. If I started having an anxiety attack, either his face-licking would snap me out of it, or stroking his fur or working on cues with him would help me re-center myself. I knew very little about psychiatric service dogs at that time, but I had heard of them. I started looking in to ADA and state laws, and started to wonder if my puppy and I would meet the criteria. I soon realized that we did, and was also introduced to several other “tasks” I could teach him to help me manage my invisible disabilities.
However, the disabilities are invisible, and are often considered just weakness by uneducated people. When you hear enough that “Oh, I used to ‘need’ a lot of sleep, too, you’ll learn not to as you work in this field long enough” or “Yeah, everyone gets sad sometimes, it’s OK” you start to believe that it really is just personal weakness, it’s no different than what other people go through, that there aren’t really chemicals that aren’t balanced in your brain or other problems throughout your body. And when I believe that, it means I’m really not disabled, just weak. And if I’m just weak, then my puppy isn’t helping manage a disability, I just like having him around. My husband has been there to remind me that what I go through is NOT normal, that we have found that there ARE chemical reasons for my problems, that he can visibly see the difference in me when we’re out with my service puppy and when we’re out without him, and that I am willing to leave the house far more often now that I have him to help prevent embarassing problems and to help me get over them faster if they occur. Without his support, I don’t know that I would have had the courage to declare my puppy a psychiatric service animal, and to formally put him through all of the training I have, giving me so much benefit. One of the most insidious things about depression is that it makes you doubt yourself, and it makes you not care enough about being sick that you work to make yourself better. My husband has been there to support me when depression has tried to keep me from getting the help I need and being able to live a more normal life with less strain. He reminds me of what I’ve said and thought when I’m not depressed. And he helps me get back out of depression. When we’re out with my service puppy and I get challenged, sneered at, or insulted because my puppy doesn’t look like a typical service dog and my disabilities are invisible, he reminds me that I am completely within the law and helps me move past it.
The reason this all came up to me today is that in Vancouver, I won’t have my service puppy. Sure, I could take him legally into another country, but it would be a lot of work, and a lot of hassle (especially since the disabilities are invisible and he doesn’t look like a typical service dog), and it’s just not worth it when we have great people we can leave him with here. I will have my husband to support me at all times, and there will be no one else I know there, so it will be less stressful than normal life. But still…it’s going to be hard. I am just realizing how much my service puppy helps me get through my days and improves the quality of my life, now that I’m facing time without him. And I am so grateful to my hubby for encouraging me to train my puppy, to use him, and to give me part of my life back.
As I was typing this my husband just came downstairs with my puppy, who was playing with him, so that my puppy could spend some time with me. He knows it’s going to be hard for me to spend 5 days without my service puppy, even though we haven’t discussed it, and so he brought him to me for some extra cuddle time. It’s like he read my thoughts :-)