So, it’s New Year’s Day and the world is full of people making resolutions, deciding that they want to try to improve their lives and so on. I don’t usually make resolutions, but I have, for many years set myself goals and used the New Year to focus on things that I’d like to achieve in the year ahead.
This year is slightly different. So much has changed in my life that the old system is not going to work. I’m still so unwell and life is so uncertain that I haven’t the faintest idea what I will be capable of doing in a few months’ time – setting specific goals really isn’t possible right now and I’m simply trying to get through from day to day. Just coping with the existing commitments and trying to decide how to answer e-mails and so on is taxing my brain massively.
I have set myself a few general goals, most of which are basically concerned with saving some of the parts of my life that are most important to me from completely falling apart, but beyond that, I cannot do more. Especially as the “get a formal autism diagnosis” pop-up referred to in my post “Why Bother?” is still flashing up in my head and the impending appointment is still causing me a massive amount of stress.
However, I have been “inspired” by some of the more typical pieces of advice that might work for some people to realise what bad advice much of it is for me at the present time, and to come up with my own alternatives. One of the things I’m going to have to come to terms with now I know so much more about the things that make me ill and the things that make me well is that a lot of the traditional “self-help” advice is not necessarily appropriate for me. I need to adapt it, partly because some of it is actively bad for me (e.g. get out and spend more time with people) and partly because my literal interpretation of a lot of it (e.g. keep pushing through the pain) means that I really will not stop until I reach the point of physical or mental collapse.
So I’ve come up with a few “alternative resolutions”, ones more suited to the person I really am than the person that society would like me to be. Little things that will help my wellbeing and will, perhaps, form the basis of a new way of living for me. I hope that maybe, one day, I might be able to educate people out in the world as to why some of the things that work for them, fulfil them, and make them feel good, don’t do the same for everybody. For now it is the start of a list that I’m sure will grow as I learn and discover. Maybe I’ll return to it and adapt it in a few months, but it’s the best I can do for today. I’ve written it in the form of advice to myself, so the “you” below is actually me, though maybe, for some of you, the “you” could be you too!
1. Screen time and mobile phone use is not evil. Sometimes, when you lose your words, it is your only option for communication. Staying alive by watching television programmes is just as valid as any other method. Never again feel guilty for carrying your phone everywhere, for getting it out to reduce anxiety when you’re surrounded by people and you start to feel ill. The technology naysayers do not understand the value of these devices to people like you – ignore them.
2. Remember that the internet is where most of your friends live, and where most of your support comes from. Meeting up with people in person can be lovely, and is sometimes even necessary, but it tires you massively and when you socialise with people face-to-face you are using energy much faster than most of them are so you can only do a small amount of that sort of thing. Don’t withdraw from the world and things you enjoy completely, but budget your people time carefully.
3. There is no reason on the planet why you should make eye contact with people on a regular basis. You have never been able to do it properly anyway, as evidenced by your lack of knowledge of the eye colours of your friends, but your ability to know what sort of teeth they have! Only force yourself to look at people when absolutely necessary. You have already found that if you are polite and nice to people that most of them really don’t mind whether you look at their eyes or not.
4. Stop pushing on through the pain. Your husband came up with the fabulous analogy that mental pain is like muscle pain – you need to be able to distinguish between the good and the bad. Learn what is acceptable and enables you to live a fulfilled life, but also learn what is damaging you and reducing your quality of life – and stop doing it! You are great at pushing through – you’ve been doing it for years. Now you need to learn when to stop and when to be gentle with yourself.
5. There is a lot of talk about how beneficial it is for people to “step out of their comfort zones” in order to grow. At the moment your comfort zone is under a blanket on the sofa. Every time you even put shoes on or step out of the front door you are out of your comfort zone. You do not need to make an effort to leave your comfort zone – you are doing that just by existing. Most people don’t think twice about going to the shop for a pint of milk, but for you it takes a massive amount of energy. Acknowledge that and ignore the glib remarks made by those who do not understand.
6. Give yourself recovery time. Lots and lots and lots of recovery time. Because of the way you process speech, participating in conversations tires you much more quickly than it does most people. Producing speech and giving real time answers is even more exhausting. Add the sensory issues into the mix, the overstimulation and processing, and you are working really really hard just to do ordinary things. Make time to recover. Do not feel guilty about staring at the wall – it is essential for your wellbeing.
7. Be alone. Stay at home on your own, quietly, with no pressure to speak to anyone. However extroverted some aspects of your personality might be, and however much you are excited and interested to know what’s going on, your brain simply can’t cope with too much of it. It has been making you ill for decades. Learn to be by yourself. Find interests you can do alone.
8. Find ways of expressing to the social people how important it is for you to spend time by yourself. Many of them will not understand. Sometimes you will need to be alone when there are people around, such as during tea breaks and social occasions or at races, and you need to find a polite clear way of telling those who come over to talk to you because they think you are lonely or being ignored that you are deliberately isolating yourself in order to recharge your batteries.
9. Do not be afraid to say no to things. Book blank space into your diary and protect it as if it were a formal commitment you had made. Do not be tempted to book this blank space for planning or otherwise pushing yourself either – leave it absolutely blank. Yes, you will struggle with massive fear of missing out, you know that, but you must choose carefully what to do because you don’t have enough social energy to do everything. You need more space in your life than most people do.
10. Listen to your own body. Really listen to it. If it tells you that it needs to spend half an hour or more rocking on the sofa or bashing against a cushion or jumping up and down or chewing something or flapping its hands or staring at a soft light or sitting in the dark or silently burying its face in something soft or anything else non-damaging, then do it, and do it as often as you need for as long as you need. It is your way of regulating yourself and you already have abundant evidence that it massively improves your wellbeing and makes you feel much less anxious and much happier.
11. Any time you see “advice”, remember that much of it is not written with people like you in mind. It is written for those with a different sort of mind. Many of those people have an inbuilt social knowledge that you don’t have and will be reading that advice differently from how you are. Many of them will be people who can go out for a meal with friends and return home feeling happy and relaxed rather than stressed and exhausted. Many will be people who have large comfort zones and do need to be challenged to leave them – the advice is for them, not for you. Ignore it.
12. Do not feel bad about asking for help. You might look strong and well, but you have many invisible conditions that mean you are not. I know it is difficult for you to accept this. I know you would rather be independent, fetch your own food, be a “normal” person in every single way, but just because that’s what you’d like doesn’t make it true. You need to work out what adaptions you need in order to be able to function as effectively as you can in the world, you need to be able to tell people about them, and you need to stop feeling guilty when other people have to help you.
13. You have a very uneven set of skills and abilities. You need to identify those things that you are unable to do and come up with compensatory strategies. It is not wrong to accept that cooking meals is beyond you and uses so much energy that you are too ill to eat food once you have cooked it. Give up. There are ready meals and other ways of getting food. It is more important that you get nutrition and eat regularly than it is that you try to cook fresh food. You also need to remember that you don’t feel hungry in the way that many people do and you sometimes need to make a conscious effort to eat. Leave the food where you can see it, set timers, reminders, and so on.
14. Do not feel pressured into answering e-mails and messages straight away, and continue to use phones for outgoing calls only. You have days when those sort of words work better than others. Do the communication work on the better days, and, unless it is really really urgent, don’t worry about doing it on the bad days. You will be more efficient that way and use less energy. Remember that you are not great at “changing mode” quickly, so plan your work to minimise task switching and maximise your available energy.
15. Be gentle with yourself. You are still recovering from a huge shock. You are still burnt out. You are still coming to terms with your new identity. Do not compare yourself to others – this is something you need to do your own way, in your own time, on your own terms. When you can, consider your skills and the things you are able to do, and how you can make your life work, but only when you can. In the meantime, just keep breathing, stay as well as possible, and maintain those things you value. You have spent more than 4 decades trying to be the person society wanted you to be – now it is time to be the person you really are.