Anxiety seems to be my constant companion. Of course, with a family with a rare disease such as Myotonic Dystrophy (DM), there are many unexpected anxiety causing and sometimes life threatening situations. I consider myself to be a very resourceful and creative person. With this resourcefulness I am able to come up with many options for each unexpected and new situation. This has helped our family cope and figure things out in ways that have made living with DM somewhat manageable.

The drawback of my ability to always be brainstorming is that my brain becomes hyper-vigilant. Pretty soon, when there are a lot of important issues going on, I am always looking for problems and solutions. In essence, I am telling my brain that my life is in crisis mode. When we have a thought it triggers an emotion. It happens so quickly that we usually aren’t aware of the process. So, if I am hyper-alert the thoughts that are connected to it are concern, fear, and urgency. My body buys into this and I have an anxious sensation. Because I am in that place a lot then I end up with anxiety.

After Kent’s life threatening situation where he was intubated in the ICU for 10 days, when he gets sick I panic. A few weeks ago he got a cold which turned into loss of oxygen saturation. I was extremely fearful that if we didn’t get a handle on this at the very beginning that he could end up in the hospital again. I took him to visit our general practitioner and they started treating him aggressively due to his history and an x-ray that showed congestion in his lungs. With DM, lungs tend to be weaker than they should be. The doctor put him on steroids, antibiotics, and albuterol. They also had him consume lots of natural remedies. It took him a couple of weeks to get over this but he is now feeling better.

The reason that I share this most recent experience with you is because in the process I became hyper-vigilant. Within a couple of days I was experiencing nausea and felt close to a panic attack. Of course, these symptoms effected my ability to function. I was having to drink lots of ginger ale and I was taking Ativan. I went to the doctor and they put me on buspar and said that buspar didn’t have the side effects of Ativan. They also told me that I needed to start meditating (5 minutes a day) and journaling. I am successful at meditating most days. The meditating quiets my mind. I have also started journaling. I also started back seeing my therapist.

What it feels like when I am in this panicked state is that my senses are heightened as if I am constantly watching out for a crisis. My friend told me that we might not be able to control our first thoughts but we can try to change the ones after that first thought. We might not be successful with changing the second thought but definitely we can change our thoughts by the third one. When I start to feel this panic I have started reminding myself of our successes, such as remembering that the life threatening situation with Kent is behind us and he is starting to thrive now. These thoughts really help me feel a sense of calm. I know that life is shorter than we sometimes want but I choose to enjoy the successes that we have right now. I find such quality of life with Kent and our offspring that remembering that helps calm my senses.

While journaling the other day I was writing about what it must feel like to be my family member and to have me always hyper-vigilant. It must feel like I am being critical and that they are always being analyzed. What I realized was that the way that I must be making them feel is not what I want. My intention is that I am being hyper-vigilant because I adore my family members and I want to support them but that isn’t what comes across. By realizing this I was able to stop being hyper-vigilant and to start acting like I have their back and support them. When I am always assessing the situation instead showing them how much I adore them I am actually harming our relationship.  This insight was very impactful for me.

The next time that I interacted with Andrea I stopped questioning her and started telling her how great she is doing. I reflected back to her the way that I really see her which is a sweet and competent person. Everything shifted with me and Andrea. Andrea and I usually have a great relationship but for the last few weeks things had been tense. When I stopped my micro-managing behavior our relationship went right back to being the supportive relationship that we usually have.

It’s unreal how quickly I became so dysfunctional. I am usually a supportive caring person but when I got extremely anxious it became a vicious cycle. The more anxious I became, the more that I micro-managed. The more that I micro-managed the more anxious that I became. I have needed a lot of help to undo my new negative behavior. I think that I have been experiencing some post-traumatic-stress. Between medication adjustments, therapy visits, meditating and journaling, I am improving. But, it is a daily process. I have to pay attention to my thoughts and the internal anxiety all day every day. Hopefully soon it will be more automatic.

With the fragility of life for DM individuals it is going to be an ongoing process for me. I have been in this anxious place before. It helps to remember the incredible individuals that my DM family members are.