Personal Stories, Autism, Challenges

Navigating Life’s Curveballs - dealing with changes and burnout when You Are #ActuallyAutistic

Since being diagnosed as #ActuallyAutistic I have had many “lightbulb” moments and I am grateful that I came across this site as a platform to write about my diagnosis, and make sense of it. Helen Needham, who runs this site, has been so supportive and helpful to me and it was an absolute pleasure to meet her in person in London in January for a coffee.

I was writing articles and blogs for this site on a regular basis which focused on various aspects of what made me “me” since being diagnosed as #ActuallyAutistic, and then 2019 arrived. With it came a new set of challenges and curveballs to deal with. I suddenly found myself consumed by these curveballs and I didn’t have the same impetus to write for this site, or write much for my other blogs either. This is very unlike me, as writing is my life and I can’t function without it. Even during periods of my life which I now know I was suffering from autistic burnout, I was still able to write to a degree. But the period of autistic burnout I experienced recently due to more of life’s curveballs was profound this time.

period of autistic burnout I experienced recently due to more of life’s curveballs was profound this time

What curveballs, you might ask, hit me so hard? Firstly, it was the realisation that my Dad is succumbing to dementia, just like my beloved Aunty, his sister, did. He has had a myriad of health issues since being diagnosed with epilepsy at the age of 70 in October 2017, and no real answers as to what they are or how they can be treated. His mobility is poor, he can no longer drive, and he has become a shell of his former self. It is breaking my heart to lose my Dad like this bit by bit every day, and his most recent displays of poor memory, forgetting how to use basic items such as kettles and what a microwave is for, not to mention the fact he believes he can see his village in Italy on the TV all the time, is really worrying. He has a full dementia assessment at the end of March, but I can see him declining day by day.

In February my second cousin was diagnosed as having stage 4 bowel cancer with no cure and no treatment that will work for her. Her prognosis is for 12 to 18 months at the most, and she has four children, two of which are under the age of 10, who will all grow up soon without their mother. She is younger than I am, and I have struggled to come to terms with her diagnosis. It hit me hard.

Then earlier this month my Mum announced that she thought she had a lump in her left breast. A GP visit later and a referral under the 2 week-wait scheme to be seen at our local breast unit followed. She had various tests at the breast unit but was told that the tests showed she did not have cancer. But for the whole time we were waiting for those test results I couldn’t sleep, I couldn’t eat, I could barely function. I was worried sick that I would lose both of my parents. It is little wonder that I didn’t have any drive to write anything new.

We will all have to deal with curveballs in life at some time or another. As someone who is #ActuallyAutistic, I can’t bear change. For me everything must be in order, precise and correct and I find any changes like these difficult to deal with. I know that none of us will live forever, and that change is inevitable, but when so many curveballs are thrown at me, I panic and struggle to process them. I also struggle to process the changes that might occur as a result of life’s curveballs.

I must adapt to one day losing my parents. Witnessing my Dad decline so much is heart-breaking, and there isn’t a day that goes by that I don’t cry about it. I am struggling to process what is going to happen to my cousin. I’m relieved that my Mum doesn’t have breast cancer.  I’ve been navigating life’s curveballs since my ex-husband walked out on me in February 2012 and the curveballs in my life, deaths, and bereavements have been relentless ever since. Up until then the curveballs I experienced were few and far between. Now it seems that I can’t even go a single month without one being thrown at me. I don’t do New Year Resolutions anymore, because you just don’t know what is around the next corner. I don’t celebrate new year, New Years Eve blends into New Years Day and I treat them as normal days of the week. I try my best to make the most of every day, seize opportunities and run with them, because I know just how quickly things can change in the blink of an eye. And change they have for me, relentlessly, since February 2012.

As someone who is #ActuallyAutistic it takes me a while to “rewire” my brain to accept the changes that life’s curveballs bring me

As someone who is #ActuallyAutistic it takes me a while to “rewire” my brain to accept the changes that life’s curveballs bring me, and to adjust and adapt to them. To make sense of it all I often find myself writing everything that is going on in notebooks. My words are random, my writing is messy, and I would never let anyone see this. The words I write are for me, and me alone.

How do you all cope when a life change or curveball is thrown at you? Do you struggle to process curveballs, or are you able to shrug them off and deal with them? I’d love to hear your insights on this.

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About Rosemarie Simmons

Rosemarie Simmons was diagnosed as autistic in 2018 at the age of 44. Neurodivergent & proud, she uses her experiences to raise awareness of autism & living in a world that is set up for neurotypicals