Many days I feel like I am running on fumes and wish I had more time for myself, my husband, my family, and my friends. I know I am not alone in this. If you are anything like me you wake up, get the kids ready for school, go to work, “teach” e-learning, pick up kids from school, finish work, start dinner, get kids ready for bed, and then yourself to bed and crash with no other time for your partner or yourself. Now I have started to add in the DMD parts of normal activities of daily life. Wyatt needs assistance getting up from the bed, getting dressed, getting his food ready etc. I still feel lucky that Wyatt is able to move himself in bed but I know the time will come that he will need me every few hours to help him turn to get comfortable in bed. I have known this for so long that when we built our house we put his room close to ours so it wouldn’t be too far to walk in the middle of the night to help him. It is something that many families who have older DMD children say is the hardest part. It is the total draining of your tank and it worries me that when the time comes I won’t have the patience or niceness when I go in there because I will be totally drained.
I know I need to find a way to make time for me a priority so when that time arises I am better prepared...yeah those are nice words to say but how to do it is something different. I recognize that when I am drained and I am running on fumes it becomes easier and easier to ignore the signs that my tank is getting empty because I literally am just going through the motions. For me this showed up as depression, frustration, yelling, and anxiety. Over a year ago I got a reality kick that I had definitely put myself and my health on the backburner and it was a hard reality to accept. I was crying all the time. When I say all the time I mean it. I was crying listening to Christmas music and if you know me I LOVE CHRISTMAS and Christmas music. I didn’t even want to decorate for our annual Christmas party. I wanted to sleep all the time and I just had no energy to do anything. I finally told Patrick that I think something is “wrong with me”. He quickly said, “You need to go see someone. You haven’t been yourself for a year!” What a YEAR!!! I called my best friend to see what she thought and she said, “well not an entire year but you have definitely not been yourself.” What!!! How did I not know this? Those were some hard words to swallow but I knew I needed to find help. I called Wyatt’s psychiatrist and she saw me the next day....yes that quickly and it definitely cost me a few bucks but it was worth it.
I realized while talking to her that I was slowly but surely just wearing myself down and using up all my coping mechanisms to try and be what I thought was my “normal happy self”. I had drained my tank, I had nothing left to give to myself or anyone else. I realized that on November 5, 2019 was when I broke. That morning I read on FB that Wyatt’s clinical trial which he participated for 3 years was cancelled. The medication that we would have sworn was working was no longer going to be available to him. For 3 years of our life we traveled and put this drug into our son’s body and it was all for nothing. Well that’s what I thought then but in reality it is something...it helped the drug company move on to find a new drug that could help but at that time I was devastated and could not get myself out of a funk. She prescribed me meds and on December 6th, 2019 I started them. It took a few weeks for them to kick in but wow what a game changer. I tell you all of this because I could no longer be a good mom, wife, employee, friend if I was not good to myself and that scared the hell out of me. My family needs me and I need me to be the best me I can be.
So finally after getting my brain in check I have added another drop in my tank to help me stay on track. It isn’t anything big but it definitely gives me a little time to clear my head and not get so worked up in the craziness of the morning. It’s just 30-60 minutes of quiet time before waking the kids up. I use that time to either watch tv and drink coffee, read a book or just journal a little bit. I know this works because the days that the kids wake up first I can feel the anxiety and frustration start when I walk out of my room. I highly recommend setting your alarm a little bit earlier than normal. I promise you will not regret it.
Lastly, my most recent addition to focusing on me a little bit more is taking a walk in the morning or doing a short yoga class in the afternoon between school hours. It’s not a lot but I can feel the difference since I started. Exercise has definitely helped me to feel better about myself and given me an extra few minutes to clear my head a little more before hitting the ground for the day.
I tell you all of these things that I have tried to help slow me down and remind me to fill my tank because I hate that being so busy during the day and exhausted at the end of the day is the new normal and that sitting for a few minutes to enjoy a cup of coffee or dinner with a friend has become the exception and something to feel guilty about. This is a small reminder that it is not necessarily the quantity of time that you give to yourself that fills your tank it is the quality of what you are filling it with.
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