Life with anxiety. It really needs to be addressed since it's such an integral part of my life. I usually write about RJC but today, it's all about me. I am a hugely anxious person. I have thought of this as a fault of mine. Something to get over, get past. Now, however, I think a bit differently. Like RJC's autism, anxiety is just part of who I am. I'd like it if it weren't part of my life, but since it is well, it just is.
From my perspective anxiety is a constant. Sometimes I am physically ill from the worry and angst. But often, anxiety is like an old bathrobe. I'm used to it. It's with me all the time. I work around it, with it, and through it.
I have met the kindest of people who tell me that I am "amazing" and "special" and that they "just don't know how I do it." While I totally appreciate the message I feel like I am deceiving them. Trust me when I say, I am neither amazing or special, and in truth, if they needed to do "it" for their child, they would. It might look different than how I do it, but they'd love and cherish and take care of their child just as I do. What I think some may not realize is how anxious I am on a daily basis.
What creates the most anxiety for me? Decisions we make are generally hit or miss and planning is all consuming on a daily basis and in the long term. This is not to say I wish my gal was different. I cannot ever imagine my life without RJC or life with her without her and her autism hanging around. It's part of who she is and I am completely at peace with that. Totally comfortable. But along with the autism piece comes anxiety which is sort of a byproduct - a side effect, if you will.
Often, this anxiety can be managed. Sort of and usually, anyway. I've kind of learned to embrace it and go with it - except on the really bad days but I'm only human. My husband is very familiar with my moments of high anxiety. It's when I cannot sleep and I walk around moaning and complaining and venting. On the positive side, I have an internal anxiety meter and when it starts to get above a 5 (on a scale from 1-10) then I know that this means something is definitely not working. So it's actually useful!
When does anxiety kick in? When she is not in my eyesight. On a daily basis this is the manageable kind. I have thoughts in the back of my mind such as: Is the ok? Is she with somebody who is taking good care of her? Is she safe? Is she having fun? Is she learning? Is she physically comfortable? Is she happy? Is she...well...there you have it. It is a constant in my brain. When I'm at work it's looming in the background. When my husband and I go out for dinner it's looming in the background. When we steal a weekend away, it's looming in the background. Sometimes it moves to the foreground and I cannot let it go. I have to call to be sure everything is ok. It's almost like that dull ache of an annoying tooth - not quite an all out toothache but it cannot exactly be ignored. I can easily get through it though, once I've put it in check. On the positive side, this mild anxiety has led me to make changes. We have learned that getting help from other people is helpful to all of us, we have changed her program when necessary, we have added activities that she loves that keep her busy and offer social and vocational opportunities. On the negative side, anxiety has kept me from doing things that other people would not think twice about doing. Going on an airplane with my husband? Nope. If something happens to both of us... I have enough anxiety getting in the car when it's just the two of us. I swear, I think we should be like the President and Vice President and always take separate cars. While I know this is impractical, it's still my thought process. So far...I've managed to get through that one. Taking a weekend with some girlfriends? Um...maybe...but not so far. Have not been able to make the leap. Partly because of the anxiety of leaving her, but also partly because if I do have a weekend away it feels like I should be with my husband since it rarely happens. Yep, the anxiety piece is constant and while mostly manageable it has it's plusses and minuses.
Anxiety kicks in anytime we have to make some decision that concerns RJC. They are often hit or miss. I think them out. Thoroughly. I am just never sure if my thought process will land us in the right place. Take the sleep issue - or lack thereof. My gal's sleep pattern has always been varied. There have been stretches of times when she has slept beautifully, then she goes through spurts of waking up yelling and not going back to sleep. I've tried a bunch of things. Melatonin - various dosages, various types, giving it to her at various times. Letting her stay up until she indicates that the is tired, rather than getting her to sleep at a certain time. Getting her to sleep at a certain team rather than waiting for her to indicate that she is tired. Hard mattress, softer mattress. Various blankets. Keeping it warmer in the house, keeping it cooler in the house. The latest suggestion from the doctor? Tylenol PM. Of course, I spent time talking to the poor pharmacist about all sorts of issues that may or may not arise, turning it upside down in my head to be sure this may work. But in truth. It's hit or miss. And even if it's a "hit' it may be temporary. Then we start again. This is how every decision is because the input RJC is able to give is limited. It's tiring and scary...and creates anxiety.
Planning on a daily basis. Definitely anxiety producing but generally manageable. RJC needs 24/7 supervision. We are very, very, beyond lucky to have some help but we still need to be meticulous in scheduling so the ball doesn't get dropped. It'd be awful to have nobody picking her up, or to have an appointment and realize there is no way to make it. Little things that can become big problems such as: do we have enough bagels so she will eat something in the morning? Who is dropping off and picking up at the day program? One of us needs to work overtime or fit in an appointment - how's that gong to happen? Vacation? That brings planning to a different level. What hotel will work? Do they have a pool? What activities can we do that we would all enjoy? Are there restaurants that have the limited foods she will eat nearby? All anxiety producing but usually manageable.
Then there is planning for the long term. Hugely anxiety provoking. This really came to the surface when she turned 21 and the reality of us getting older and her getting older really sunk in. We've talked about different possibilities, we went to visit a farm (yeah...no). We know what we'd like (in theory) but it does not seem to exist. The idea of creating our own long term program is overwhelming and gives me the biggest headache ever. The financial implications, the legal implications...yikes. And somehow we have to do this while working full time, meeting the needs of our other daughter (though she is an adult, we never stop worrying about our kids), making sure our marriage survives, keeping the house from falling down and you know...eating and sleeping someplace in there. So far that too has been manageable.
I do think it's possible that my anxiety is over the top at times. Sleepless nights for sure. Feeling weepy (I really, really hate that) or grumpy (other people really, really hate that). The medication thing - been there done that years ago - no thank you. So I drive my husband crazy, my friends crazy, and muddle through. I try to enjoy the adventure as it is. And so I move forward, anxiety and all.
That's my perspective on life with anxiety.
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