Escaping the Doldrums

It’s interesting when you pick a name for a post based on what you think it means and then when you google it to check the spelling you discover it is so much more. I picked the doldrums because I knew it was an area around the equator where sailors would often become becalmed due to lack of winds, and could be stuck there for days or even weeks. It has something to do with the way the winds move in the northern and southern hemispheres. The area of the doldrums moves, or maybe sea currents move the boats and they eventually pick up wind again and can be on their way.

Google search also tells me ‘They’re the most treacherous seas on the planet. At those that lie beneath the Intertropical Convergence Zone (ITCZ), known by sailors as the ‘doldrums‘ or ‘unwise tantrums’ for their¬†dangerous¬†tendency to lurch between extremes, almost absolute calm can unexpectedly degrade into raging thunderstorms and hurricanes.’ but doesn’t actually give me the details so that I can reference that properly. The term ‘unwise tantrums’ caught my attention, as did the lurching between extreme of absolute calm to raging thunderstorms.

Now I feel that not only have I been in the doldrums (the calm with no ability to move) but that my life can be the doldrums when I lurch from that calm that immobolises you to the rage that is so destructive.

But I digress.

This post was supposed to be about the fact that I have been stuck without purpose and I have now gained something that gives me direction and the ability to move forward again. But now I am looking over my shoulder for that raging thunderstorm.

I met with my autism mentor on Friday (at the prompting of my husband – he organised it and told me we were going) and she mentioned that she had been meaning to start a facebook support group for autistic adults for a while. It is also something I have been wanting to do, but with few autistic friends and none locally it didn’t seem like it would go anywhere much or achieve anything. She was lacking the impetus to start the group and I was lacking the connections. She has connections, I have impetus. The group is started. We have 25 members. We have success. Next step is to get the group working, providing support and social connections for each other. Tips and advice and anything else the members of the group need it to be.

I am not naming or promoting the group here (at this time anyway) as this blog isn’t about publicity, It is just me documenting my thoughts, feeling and events and if people want to read it and it helps them then that is good. Our group also aims being a bit local for personal social support. Saying that, we already have members from all over Australia, but hopefully the group will enable them to connect with people in their area, and in the meantime online is good.

So, I have a special interest at his time. There is part of me that just wants to run with it and organise everything and just do things. But I know I have to take it slow, let the group decide what it wants to be and let other people have a turn too. I must temper the child who wants to run around manically because it is so excited or I will experience the other side of the doldrums when something doesn’t quite go right.

Learning to be Me Again

Even though I have only been officially autistic a very short time I am more then happy with the label. I consider myself out and proud. Happy to be it, tell people I am it, wave the flag and celebrate.

But there are days when I still don’t know who I am. There are things that fit, and make so much sense it is a homecoming. But other days I feel like someone has taken the box, shaken out all of the bits and left me with the instructions for something else entirely.

I don’t have to pretend to be NT anymore, but I do have to play by enough of their rules to be considered polite enough and to get by. But I also get to prioritise me. It is hard working out who I am and what I want after so many years of pretending to be a sheep.

I am trying lots of things on for size to see if they fit, and also if they feel good and I like the look of them. But even things that look and feel good aren’t necessarily what you want or need. And some things you want or need aren’t necessarily the things that look or feel the best.

Today I found out that autistic people NEED their special interests. It isn’t just something we do, it is one of the things our brains needs to do to function. It helps us function to a higher capacity, but if you don’t indulge (for want of a better word) in a special interest the brain actually starts shutting down and wont function on a basic level. So, find me here, working out what a special interest for this moment in time can be. Feel my brain starting up again. My mentor (who told me about this special interest requirement) and I are starting a local facebook group for autistic adults. I was hoping to join one but apparently a local one does not exist. Well, it does now. Creating the group was my special interest for the day. I have a little bit of happiness in a job well done.

So, learning to be the autistic version of me is going to mean creating some of the tools I wish were already out there. Someone has to go first, I am happy to do it, but I kind of thought a lot of it would already have happened by now.

Cat on the Wrong Side of a Revolving Door

Today is one of those days.

My husband walks into the room I am in. ‘Do not see me, do not acknowledge me, do not talk to me’. He does what he needs to do and leaves ‘Why are you ignoring me?’

I managed to keep this in my head, but explain to him what is going on. Luckily today is one of the days he can laugh about it. I would love to laugh about it but it is me that it is happening to.

I feel like I am on the cusp of something happening, but what can happen with Covid restrictions on a cold and rainy day. Its not quite cabin fever, I don’t think I actually want to do anything. Maybe it is frustration that the not doing anything is not my choice.

I have the munchies. I have no idea what I want to eat. I am not hungry. Part of it is comfort in the motion of hand to mouth, I guess it is similar for those quitting smoking. Part of it is my mouth wanting a particular flavour or texture. The ‘mouth feel’ of a particular food, but I have no idea of the food or the feel. Word of warning, when you are in a mood like this and your husband is in a mood that finds it amusing, DO NOT ask him what you can put in your mouth that wont make you fat.

I have to admit, dealing with today is easier than it would have been before I ever suspected I was autistic. I can almost laugh at it. Before I would have acted on my moods. There would have been a huge fight, because he must have done something to make me feel this way. That makes me sad. The amount of time I have wasted yelling at my husband for things he didn’t do. And not like he didn’t put the toilet seat down or something, he did nothing wrong, it was my mood that was wrong.

And now I feel sadder, but the contrary mood fades. No regrets, because all of my choices in life and my actions were based on information I had at the time. But if I had even the slightest hint I was autistic, and what that meant, so much of my life could have been so different. I love where my life is at, but it would be so nice if my life felt like it was more.

My prickly cat has lost interest and wanders away to find something else to do. Nothing has happened, I have not done anything, so why do I now feel so exhausted?

Spring is in the Air

I know it is technically still Winter. But a couple of lovely sunny days and the hints of blossoms on the trees gives hope of the approaching Spring. I am not fooled, I know we are still in for some hard cold days when the doona beckons or will not release us from its tangled hold, but today is sunny and I choose to be an optimist.

Apart from the sunny days, thoughts of blossoms and optimism, other things also turn my thoughts.

Apparently most people with Autism will have allergies of one form or another, and this is one of the times I tend to follow the norm. (Yay for being on the curve)

I love my garden, and growing plants and seeing the changes of the season in my microcosm. (You will have to take my word for this, my current garden is still very much under planning and construction and paused until other garden destroying projects have taken place). But planning a garden is much more than picking pretty plants when you have allergies.

There a plants aplenty. Beautiful things that will survive and thrive in the places I want them to be. But choosing a plant is so much more than going to the nursery and picking something pretty. Will it grow where I want it? Will it grow too well where I want it? What affect will it have on the surrounding area, roots, shade, branches, spikes, fruit, and so many more things.

It is the things that aren’t on the label that I need to know. Will it make me sneeze, give me headaches, cause my skin to itch or blister. Google doesn’t always help as some of my reactions are obscure. Ivy gives me blisters (or blister like sores) and that took a while to figure out when you have a garden with miscellaneous patches of the plant. Tomato plants make me itch (but I am willing to risk and wash myself as quickly as possible for the home grown fruit). Daffodils give me a hard deep headache. (I volunteer with the Cancer Council and it takes diplomacy to tell them you can’t participate in one of their major fundraising days because you are allergic to it)

It has taken me all my life to accumulate my knowledge of what plants I can tolerate. (Moving interstate to different climates four times in my life hasn’t helped). The plants that are on my hit list are quickly removed from any garden, this can take a year or more as some plants only annoy me in certain seasons. So, now I have my relative blank canvas, a couple more projects and I can find the plants that like me the whole year round and start creating my oasis. Just hoping that any hit list plants my neighbours have can be avoided at any crucial time.

But why, apart from the sunny days, are my thoughts on Spring?

I can decimate my garden. Go napalm on the plants that don’t like me. I can clean my house with neutral substances, I can avoid areas where I know there will be plants that give me adverse reactions. But I don’t have that control with the world of people.

I choose jobs in industries that do not favour the NT female. I avoid the sales reps with a fear of BO. I don’t go to the fancy functions where the well dressed and made-over congregate.

But today, with the border closures and restriction on travel, my husband had to sign some legal documents for his mother’s estate. Because my husband could not cross a border to meet with the probate lawyer, the probate lawyer came to our house to sign the documents.

So, here I sit, with a dull head and wanting to cry, on this beautiful but chilly day, with all the doors and windows of my house open, hoping that the the perfume dissipates so that I can sleep tonight.

A Void in my Personal Space

A week after my official diagnosis my mother-in-law passed away. While not unexpected (she was 90) it was rather quick. Complications in treating a medical condition due to pre-existing medical conditions and medications.

So, processing dealing with being autistic (a good thing, just a very different thing), dealing with my own grief, supporting my husband dealing with his grief (there is no grief like losing your mother, no matter anyone’s age) and supporting my interstate daughter with her grief at losing her last grandmother. Throw in a pandemic and rapidly changing border restrictions (and living on one of those borders) and you should be able to understand why blogging hasn’t been high on my to do list.

So much processing. Wanting to curl into myself and hide. Trying to be there for the people who are more important to me than myself (even if I’m not good at showing it). Wanting to cry but not wanting to be messy emotional. Knowing I need to be emotional to help process everything. Like I told my husband, its like gastro, you know you will feel better if you throw up but the process of throwing up is so disgusting that you put it off as long as you can.

And now the long process of putting our lives back together with a hole in it. The pandemic makes some of that harder and some of it easier. Some more of the reality will hit when restrictions can ease again and the things we used to do will no longer be done because of her absence, not because of the rules.

I couldn’t have asked for a better mother-in-law. She accepted me. She never interfered. She loved my daughter, her youngest grandchild. There is something special about being the youngest, when the others move away and there is time for appreciation of what will be lost in the near future. I think we lived far enough away for visits to be special, but close enough for them not be to infrequent.

I love her son with all my heart. She raised a beautiful man. I thank her for the privilege of having both of them in my life.

I believe she was autistic. So many things in her life are clues, her last days no different. She died on her terms. A declarations of ‘I’m sick of this shit’ a reference to her health battles in the last few years and her last battle that she could not win and acknowledgement that the fight would be futile.

I don’t think I truly appreciate just how much I will miss her. She was always quiet, in the background. There if you needed her but not interfering. Very intelligent, very caring, just a little bit sarcastic (she had no idea where her children got that from, until the next sentence out of her own mouth) She loved to get presents, folding the paper meticulously to be used again. She liked to go out to the club for the pokies and the bingo. She loved to people watch but didn’t want to talk to the people because she didn’t want to know their problems. She loved her garden, her children, grandchildren, great grandchildren and great great grandchildren.

You are not gone until the ripples your life created have passed and stilled.
May your ripples never cease.

What’s the Best Thing about Bashing Your Head Against a Brick Wall?

All my life I have been using other people as the yard stick for what I should be able to do, and even what I should want to do. More to the point, I have been using other women as the yard stick. Maybe not all women, not the really girly ones, I had to be a little realistic with my expectations.

I should be able to talk to people, to make idle chit chat, to talk about boyfriends and babies and make-up. (ok reality check, makeup was never going to happen with me, it smeared on my glasses – that was my excuse and I was sticking with it)

I should want to go to parties, to meet people, to chat up guys and flirt. (I didn’t mind talking to guys, they didn’t want to do idle chit chat about boys, babies or make-up).

I shouldn’t just want to talk about babies, I should be clucky, and want them. Babies should be the ultimate aim of my life. The dating, boyfriends and all the other stuff was just a way to get to the BABY.

I should be able to work at jobs that were people focused. OTHER PEOPLE focused that is. I should be nurturing and caring and do everything for others as if they were incapable of doing for themselves.

I should get a job as a nurse, a teacher, a receptionist. I should help solve other people problems all day. I was good at solving problems, good at listening to people, I should make it part of my career.

Oh yes, I should have a career. Not just a job. I should want to make something of myself. I should have goals and ambitions. I should network and climb the corporate ladder. I should manage people, middle management. I should look after the people below me while meeting the goals and expectations of those above me.

And as I do all of these things I should be happy, outgoing, energetic. I should have hobbies, socialise. Go out for coffee with the girls. I should be all things to all people. Well, not all things but certainly the things they need me to be.

So, what is the best thing about bashing your head against a brick wall? IT FEELS SO DAMN GOOD WHEN YOU STOP.

What is Love?

As part of my diagnosis the psychologist asked me if I loved my husband. Of course I do, I wouldn’t be with him if I didn’t. The next question was, ‘What does love mean to you?’. That was a hard question. What is love? What is love to autistic people and does that differ to love for NTs?

A different psychologist once asked my husband why he loved me. His response was ‘Because she doesn’t bite me, and sometimes because she does’. (Obscure movie or comic reference there)

A lazy rainy Sunday morning lie in conversation on what love is for us.

Like is when you are willing to share your personal space with someone. Love is when you want to share your personal space with someone and you miss the person when they are not sharing your personal space. There are more nuances to it that that, but that seems to be the bones of it.

Not long after we got together my husband and I agreed that we loved each other and that we would let each other know if that changed (apparently this isn’t relationship normal). We still tell each other we love each other, because it is nice to say and nice to hear. Saying ‘I love you’ shares the joy, offers support in times of stress or sorrow and offers bonds of sharing.

So yes, I love my husband, because there would be a void in my personal space if he was no longer there. There are many other people I love for the same reason. Some would leave bigger voids than others, but all would cause me some degree of sadness if they were no longer accessible.

An Incredible Lightness in Being

So, yesterday I got my official results. It gave me a great sense of peace. The report was factual. I could not disagree with anything it stated. This morning I woke up happy. It is corny, but today is the first day of the rest of my life. And it is MY life again. I am autistic, and if people have a problem with that then it is their problem, not mine.

So, to telling the family

My sister was just an update. She did my family questionnaire, so she knew what was going on. Older brother was cool, he had suspected he might be for a while but hadn’t done anything about finding more information. Guess what he has been up to today? Younger brother seemed indifferent, as in ‘Why are you telling me this?’. Dad was fine, but as he is somewhat deaf and I had to tell him by phone I had the joy of the info being relayed through my step-mother – “When did you get autism? I thought that was only something kids got”. She is nothing like my mother was, but Mum was autistic too, we just didn’t know it. My daughter was fine. She got her diagnosis earlier this year after I told her I was going for one.

My husband has read my report. There have been questions to aid understanding. How could I tell someone I barely knew so many details that he barely knew about me? (Not an accusation, just a request for information) If I could not lay myself bare before this person I would never know the truth. I had to trust my psychologist, if I could not, I could not be diagnosed properly. I have never lied to my husband, there are just some truths that are too big or too personal to share out of context, and if context never arose they were not secrets, just not yet shared. He is still processing everything and now understands why I needed to shut down after my diagnosis sessions.

My daughter’s actual response when I messaged her my results was ‘Woo?’. She gets it. She was diagnosed as level 1, venturing into level 2 when stressed or tired. My diagnosis, Asperger’s in the old terminology, level 2 with high levels of masking in the new terminology.

So yes, I am autistic and I am happy about it. And now, the true journey begins.

A Little Bit Manic

So, tomorrow is D day. I get my official diagnosis. Just to add a little fun to the mix, my job provider also decided tomorrow is the perfect day for my JobSeeker appointment. Luckily (I think) my Jobseeker appointment is in the morning and the diagnosis one in the afternoon. I wont be able to wave a piece of paper at my job provider and say ‘See, I really am autistic’ but I will be able to process my diagnosis at my own pace and wont have to pretend to be able to function while I do this.

So, to cope with this double stress day tomorrow, my brain has decided that today is the perfect day to do EVERYTHING. I have warned my husband and he has wisely decided to vacate the house for several hours. I figure I am best off just riding it out and crashing later today. Hopefully I will be physically exhausted and sleep well tonight.

So why am I writing today? Well, my brain has decided that this is some of the everything that needs to be done, and the grass is still too damp to do the edges and mow. I have already done the washing and the vacuuming and am trying to pace myself just a little bit to get as much bang for my manic buck as I can.

My brain is absolutely fizzing today. I needed to double check the spelling of manic. I didn’t think it had two n’s but needed to be sure. Google search threw up suggestions based on my typing and right under manic was manicure. My brain immediately started to wonder if indeed, would getting my nails done calm my mood today. Given I had to bounce while hugging my husband goodbye this morning, I sincerely doubt it.

I think I have said all I need to say today. My brain says I have and I must move on to the next task IMMEDIATELY.

Wish me luck for tomorrow. Actually, I may need it to survive today.

Diagnosis Progress Update

It has been two weeks since my second diagnosis session. I am still processing it. I will get my diagnosis in another four weeks. Apparently it takes a while to go through everything and work out where somewhere fits on the spectrum.

I have been warned the diagnosis can be a negative experience. I will be told all the ways I can’t / don’t function like a ‘normal’ person. I think I am mostly okay with that. Unfortunately I don’t get told what my autistic super power is. That is something I would like, both having one and knowing what it is. If I had to guess I would say organisation would be in there, and finding stuff, objects and information.

So, between processing what has been, and what may be coming, I haven’t had a real lot of time to think about the rest of my world. I am enjoying the Covid lockdown. Not being allowed to go out and having to keep at least 1.5 metres from other people is very much one of my happy places. I am missing being able to go for drives. I love to be out and about seeing new things (so long as the people interactions are low). The good thing about new places is that you aren’t supposed to fit in and it doesn’t matter if people think you are strange because you don’t intend to stay.

So, I may be quiet for a while. I will update some time after my official diagnosis, depending on how long it takes me to process.

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