Living with chronic pain and invisible illness and how easily the day gets derailed by autism and anxiety

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Today I had no appointments (a rare and wonderful thing), I was going to work on my business and do some pain advocacy work.  Recently an article has been widely shared that dismisses severe back pain as needing nothing more than a heat pack.  The article is riddled with falsehoods and incorrect “facts” regurgitating all the myths that we now hear constantly – opioids are so additive no one can resist them, opioids are not effective long term, opioids increase pain long term.  NONE of these things are true, so I’m going to rebut the article with the facts, the science and hope that the journalist will print a retraction.  I will share it widely to other journalists, and hope someone will pick it up.

I also have a few orders to make and ship and I need to order more supplies.  A full day.

Then this morning the Chicklet has a meltdown panic attack. She has just started a new job (her second casual job, she has been unable to find full time work largely due to COVID-19).  Yesterday was her first day, today is her second shift. She is training in the city store with the area manager.

She received word that she couldn’t park in the staff car park because the manager needed the ONE park thye provide.  So many things wrong with that, but its beside the point.

The Chicklet has severe anxiety and one of her anxieties is about finding car parks.  I know it sounds silly, but its phobic.  It’s the same as some people are terrified of heights…she is afraid of being unable to find a place to park the car.  She has been worrying for two weeks, talking about not knowing where to park. Frankly she has been driving me nuts, because I’m dealing with all these really big problems and she’s prattling on about a damn carpark. The solution was very simple, message the area manager and find out where to park.  Eventually she did that. But it took endless discussions and counselling from me, support and ENERGY that frankly I got sick of spending on something that is so trivial to me.

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But anxiety is like that.  It sounds trivial to people who don’t have severe anxiety, but its not at all trivial to the anxiety suffer.  The Chicklet has mild autism and her anxiety is the main symptom that affects her life.  Its not disabling, but its can cause major problems on occasion.

Like today.

What to do?  It was too late for her to get a bus. She was in full meltdown. If I did nothing, she would not go to work and she would lose this job.

So I drove her in.

I will not drive her in every time the carpark is taken, I drove her in to get her through the crisis today and buy time to work on this anxiety.   I will help her.

She has a referral to a psychologist that she hasn’t used. She has medication that she hasn’t started.  She wants to “manage” it herself.

But she’s not managing it. 

I always tell her that you can’t help having anxiety, but it is your responsibility to learn to manage it.  There are treatments, therapies, strategies and tools she can use to improve her response to her anxieties.  I am here to help but I’m not here to “rescue” her every time something comes up.

I am same with Gamerboy.  His autism is much more severe, it’s a disability. He also has anxiety and when he was a child it was extreme. He was so afraid of heights that I could not drive into a multilevel carpark with him in the car, he was terrified and would melt down.  He couldn’t walk across air bridges, he couldn’t walk on the upper level of the shopping centre.  It took years of working with him to get to the point where he could access the upper levels, as long as he didn’t have to go near the edge. 

Years of work.  I have been just as much psychologist and occupational therapist as mother to my kids.  Their father didn’t participate, he chose to blame Gamerboy’s extreme anxieties and behaviours on my bad parenting.  It put a great deal of stress on our marriage.  Their father believed that kids are more like accessories and you should keep living your life exactly as you choose and the kids just have to tag along.  And that’s fine, that’s a perfectly fine philosophy to choose, but NOT if your child has a disablilty.

He opted out, and left me to manage everything on my own.    Great.  Most people in my life were the same:  “Oh but he doesn’t’ REALLY have autism, he’s too well behaved!” (Most people have no idea what autism looks like).   And the whispers behind my back: “She thinks he has autism but I think she just wants attention”.  My family and friends denied all of it, and made it clear they thought it was my problem too.  It WAS my problem, but not the way they thought.  I was totally unsupported and felt very alone. But I learned about autism and anxiety and got on with it. Gamerboy rarely melted down in public and few people ever “saw” his autism. I believe its because I was do damn good at managing his autism, teaching him strategies and working through the anxieties and meltdowns as they came up that he appeared “normal” to everyone. Yeah, I’m going to take credit. I did a damn fine job and I have a right to be proud.

Now that the kids are both young adults, almost 19 and 20 respectively, I’d expected things would be easier by now…and they are.  But there are still time when I still have to intervene and “rescue” the situation, and then it’s the ongoing therapies to take an extreme anxiety and get it to the “manageable” anxiety level.

So I drove her to work, and drove back home. That’s one hour and twenty minutes round trip.  It was early morning, so it has taken all my energy, now I need to recover.  And I have to pick her up this afternoon, at 5pm.  Another hour and twenty minutes round trip.

She has taken most of my energy and upright hours with her anxiety.  Its frustrating.  She has taken most of my day and she is not aware, not truly aware, of what that really means.

But I don’t have a choice. I am her mother, and her support.  I want her to keep this job, I am proud of the way she has worked hard in getting this job and her other casual job.  She is a hard worker and she’s conscientious and dedicated.  She deserves this job, she aimed for it and got it.  I don’t want her to lose the job because of anxiety.  But now its up to her to work on this, to get familiar with the area, find out where the alternative car parks are, because I will do this ONCE.  Only once. 

Otherwise I cease to be a support and I start to become an enabler. 

So now my plans for the day have changed.  I’m aching all over and need to rest for a while.  In an hour I’ll work on my bracelet orders.  Then I need to walk the dogs.  Then the research and write the rebuttal article.  Then I need to drive back into the city to pick her up. 

I’m going to expect the kids to sort dinner. I usually have to tell them WHAT to do, step by step…e,g,  put the pasta water on to boil. Chop spring onions. Crush the garlic.  Slice the bacon.  Grate the cheese.  Put the pasta in the water. SET the timer.  EVERY step needs to be mentioned, else it won’t be done.  It’s just the way it is. It takes them longer to retain this kind of information.  Miss a step and you land in a meltdown.  But it will be doable. I have tried for years now for each of the kids to have three nutritious dishes that they can shop for and cook from scratch.  They each have one at this point.  The Chicklet still needs help with her dish. But she can cook tonight, that will be how she thanks me for using up all my energy on her needs. 

Seems fair. 

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1 COMMENT

  1. I have a 42 and 40 and I still have gut aches worrying about them. I fear it is our fate as parents. if I ever escape it I will let you know how I did it. Until then do what I do swear a lot.

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