Making progress & not freaking out over bad days
Just rambling here I guess... I'm gradually getting more productive every day now, with coping strategies and stuff I've learned from OT as well as having learned to manage emotions more with combination of OT and counseling. Today didn't go so well, and for once I'm not panicking about that. I've had days like this when I'd get almost nothing at all done and just got stuck to the internet with no brain power left for other stuff. I've learned that this is ok. It makes sense after all, because I've recently had a whole bunch of very good days personally, professionally and even socially. Today I slept in because I desperately needed it, and surely apart from the tiredness I just needed a break mentally from all the strategies I've had to immerse myself in in the last month or so, and I've had a few moments of comparing myself guiltily to how I think I "should" have spent the day, but much less than I used to. I've come to realise that with any AS-related problem, if it's not working and I push it, it gets worse. So today I would definitely have overloaded myself far more severely if I'd pushed ahead and tried to make myself do a bunch of stuff that my mind couldn't take. I'd melt down and shut down and take another day or two after to recover.
I suppose what I'm trying to say is that interventions can work even if you don't get them until adulthood, and that it's ok to have bad days, and it's ok to feel like it's going slowly for you because sometimes it does. And sometimes you just can't see the improvements yourself and it takes a compliment or two from someone else to make you realise that things really are getting better.
I wrote a post recently enough saying how I'd lost some of the nice parts of my autism, particularly my ability to get happily lost in playing music. I can say with great joy that I have regained that ability. This week was the first week in three years that I have been able to just sit down to a piano and get buried in practicing music. It felt like when I was a child. It was like being back at my own piano in my own little autistic world, going crazy with music and feeling excited and happy and fulfilled. I realise now that I had so much mental clutter in the way that it was impossible to just do my thing like I always had. This was made clear to me when I ended a toxic relationship with my former "best friend", and suddenly my playing got a whole lot better. It had improved a bit lately with my anxiety dropping further, but this was like the last thing I needed to sort out before my ability to enjoy my obsession could be released again. The feeling has been amazing.
One very important thing is list-making. Pick something you struggle with every day, an example for me would be getting up and ready and out the door every morning. I now have a list of instructions for myself. If I follow that, I won't get overwhelmed and will just get up and dressed. On good days I can do it from memory. On bad days I need to follow the list written. Go into as much detail as you need to, everything from rising out of bed to putting your underwear on to eating your breakfast. Over time you'll learn how much time it takes to do everything on this list, so you'll have to begin by starting the activity a bit earlier than usual until you adjust and learn how long it takes you. Then go and make lists for everything else. Pick your favourite meals and do instructions lists for them, and keep them in your kitchen. Make instructions for making tea or coffee, or for washing up, or doing laundry, and stick these to the walls/doors near the items required to do them. You'll feel stupid at first, but then you start to realise that following the lists lets you get from step 1 to step 2 of anything you want to do without your mind doing cartwheels and jumbling up the order of the steps etc.
Another useful thing is to come up with your own ABC for anxiety and/or panic attacks. Mine go like this:
Awareness - be aware of how anxious I feel, if I'm shaking, sweating, hyperventilating etc. (be aware = don't ignore)
Breathing - do the deep breathing that my OT taught me (you can find loads of tips for that online)
Call for help - if I feel bad enough, call my boyfriend or a friend or Samaritans or anybody just to talk and keep myself grounded
Figure out whether you respond better to light touch or firm touch, and seek sensory stimulation that makes you feel better. If I wring my own hands like mad, or preferably have someone else squeezing my arms (my boyfriend does this for me a lot) I can concentrate better in an overwhelming environment, e.g. a noisy café or in town. I would love to get a weighted vest but they're very expensive. I sometimes wear my backpack with some stuff in it just to get some deep pressure, and sometimes I wear an elasticated wristband to fidget with and to feel that tightness on my wrist. Look for ways of getting sensory input that helps you... I'd like to give more info here but my OT hasn't been able to do any sensory integration therapy with me yet as we're waiting for the new clinic to be finished up and opened.
Use everything at your disposal to remind yourself of things. I use reminders on my laptop and phone and my diary and a whiteboard and a jotter pad. Basically, there's always one of them nearby. Once I write a "to-do" into one of them, I fill it into all the others whenever I get to them. I am constantly updating my to-do lists and reminders and calendar and diary and board. It feels like huge effort at first, but it does just become routine eventually and you find yourself keeping on top of things much more easily. If you're like me and relying on one system alone doesn't work, then just use everything you have.
One thing I haven't mastered yet is knowing how to schedule rest and leisure time, but one thing I have learned to do is enjoy it when I get it. I relax now and enjoy what I'm doing without worrying about right/wrong, good/bad etc. This took a combo of counseling and OT to straighten out. I learned that everyone's own idea of right and wrong is their own and shouldn't be imposed on me or anyone else, and even so it IS right to rest and relax because you'll just destroy your health if you don't.
An important thing for not losing important things is to have a place for everything, and everything in its place. Cliché but it it works. If you have a place for everything, then you'll know where to put it when you're done with it and you'll know where to find it every time you need it. Use stickies/labels if you have to. I'm strict about my wallet and keys, always in the same pocket of my bag all the time, or else in the same pockets of my jacket every time I'm without my bag. Even when I come home and put down my bag and take off my jacket, the keys and wallet will be either in their designated bag pockets or designated jacket pockets. I do this for all my other belongings too. I have to be very strict about it though or I will not be able to find my own stuff, even if I use it frequently.
Use gadgets to help you. If you have a computer, use assistive technology if you can afford it. I have Read & Write Gold, Dragon Naturally Speaking and a Livescribe Smartpen to help me with reading, typing and taking notes in class. Other items like a timer, sunglasses, earplugs/iPod... anything you can think of that will help you, use it if you can't find a strategy to work.
This is pretty basic stuff I guess, but I really needed the coaching of an OT to learn the techniques properly and help me stick with them and not lose courage when it didn't fall into place quickly. I'm still early on in OT, she's not seen me in a few weeks as I've been sick, so I'll hopefully have more for you later...
That is awesome thanks
I like the idea of scheduling rest time in my day - i have never tried that.
I need to be more on top of my schedule - i tend to get carried away with my special interests and have trouble with self contol and prioritising other things first. Any tips for this in particular???
I wouldn't dream of leaving the house with out dark sunglasses, I will have to get into the habit of the ipod too that could help me alot.
I am trying to work out what calms me down and organsises me in terms of sensory stuff,
going for a walk at night helps me to relax and process the day stop my mind racing
going for bushwalks in total solitude helps me revitalise myself when it all falls apart
I have a squeeze ball, that i try to implement instead of biting my lip.
I have a brush that I use on my arms and legs and head to calm down (deep pressure) I use this in the car all the time.
I look forward to more ideas in future
thanks
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Never, Never, Never Give Up
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