Are things JUST different?

Why not stop adapting? Would you be less exhausted then and have more energy? 

That’s complex! I see millions of bright multicoloured dots though when my eyes are open or closed ~ I thought that was what we and the universe are made of. I sit for hours sometimes just looking at them, at their incredible outstanding beauty and perfection. I know that everything comes from them so although I like beautiful things, I know that nothing is ever as beautiful as these beautiful multicoloured dots. 

Do you have a support worker Jan84? Somebody who is there just for you, who you can spend time with each week, even if you only go and let of steam or whatever? I get a feeling that I want to wrap my arms around you (don’t get freaked out, this is how I communicate with people, on an energetic level but the communication doesn’t always come through in words) ~ I feel like I want to hold you strong and tight and love you until you can love yourself. It feels like you need a protected area in which you can use to let go of all that’s not you and come into a relationship with all that is you. .... this is getting weird (not to me, but probably to you), so I’ll stop. 

But seriously, have you got a one to one support worker? Relaxation, as well as friendships, leisure time, time for self etc are all important elements of everybody’s life, which I have only recently realised but that doesn’t mean that the way you relax looks like the way I relax etc but it is important to discover a way for you to relax, regularly, like, everyday and it sounds like you could do with some support to figure this out. As well as someone to let off steam to, who understands you. 

I feel like I’m starting to get the bigger picture now, of what’s going on from your original comment. I can’t lie to you, nobody on earth can say their difficulties or struggles are worse than somebody else’s but we do have to have our difficulties acknowledged and heard before we can move on from them or address them or let them go and this is where a support worker would be perfect. My support worker tells me, even if you just want to come in and moan and groan or whatever, you can. 

All that stuff with the double vision and dizziness etc is very complex and you need someone to support you who can understand all that as well.

I think my happy time is when I wake up at 3.50 in a morning (my waking up time) and all the rest of the world, including the animals are asleep. This time is so precious and special to me and it enables me to prepare for the day. It’s vital to your health and well being that you get that special time back for yourself and you’ll discover it much easier and probably quicker, with the right support. 

All the best Jan84. 

To The Cass-Man... I had seen this yesterday, but I was not Posting then, and only after Posting upon your New Thread, I find this again (I am sort of sorry!). I wanted to say... that the main word here is PRIORITIES, and what they are is different for everyone, of course. If you are beginning to feel "difficulties" then although it may be difficult, some things must be 'cut out' in order to give yourself your own time to REST.

...Or something. (You probably knew this already!)

Are you managing to get time for yourself to simply be or to relax or whatever?

I used to say that “I don’t like to relax” now I’m more aware why... relaxing in not safe environment usually causes even more stress. So I’m still learning what would be safe environment for me ... I remember when I was a child I would wait till everybody was asleep and then I was having my happy time, it was so pleasurable I remember that feeling even today. I also remember how unhappy I was the next day when I fell asleep before everybody else. 

Today I’m still struggling to find equivalent of that... even when I finally get some time alone I find it difficult. Relaxing means that I’ll have double vision as I’ve got convergence insufficiency, to keep single vision I have to stress my muscles to keep my eyes aligned. Visual snow and tinnitus make me dizzy so whenever I stop moving I feel like everything around me starts to spin. When I close my eyes as an Aphant (somebody having Aphantasia which means blind mind, I’m not able to create even simple image in my head) I would be expected to see blackness ... I see millions of brights multicoloured dots, it’s very busy out there. 

When I start to relax I feel like all of those things takes over me, I feel like drowning.

I understand. You probably suffer more in the heat than I do. I suffer more than many others in the heat. So, yes, I understand what you mean by worse. You are negatively affected more than most people are by the heat. It is a hard concept for someone who is ok in heat to grasp, or someone who tolerates the heat better. And you are in a stressful situation too. These are facts. I hope you find your way to cope. Heat makes many people a bit irritable, unless they are on holiday, and irritable people say things they would want to retract! It’s best not to dwell on such exchanges. 

You definitely have it worse in the heat than I have it. I enjoy the heat, and it has to get very hot before I sweat. I can spend a long time in a sauna or a jacuzzi, much longer than many other people. It's not just "different".

It's more frequent for someone to say they are worse off than someone else, but I will freely and happily admit when someone else's situation is more difficult than mine. I think that gives me the right to sometimes say that certain situations are more difficult for me than they are for other people.

Some people really do face greater difficulties than other people. That's why disabilities are named as such.

well done Jan84, it sounds like a terribly difficult situation and you sound like you're handling it not only incredibly well but with compassionate consideration to your wife. I have great trouble saying no to anybody so if you're anything like me, that's a major achievement. Are you managing to get time for yourself to simply be or to relax or whatever? Anyway, well done, I think I would have run away by now. I admire you. 

But how do you know it's 'worse' just because you've got more identifiable symptoms? It's like saying one person's experience of being abused is worse than somebody else's. You can't experience what your wife experiences and visa versa so there's no way of telling which one is worse. In AA, there's a common saying that if everybody threw their troubles down on the table and we're told they could take back which ever person's troubles they wanted, they would pick up their own, no matter how 'bad' they thought they were. And what are you trying to achieve by proving that your difficulties are worse than your wife's or other people's? 

Rip Van Wrinkle said:

Only your wife could explain what she meant.

I think it was difficult for me because “just different” was in regards to my sensory issues especially the heat. She was after long and tiring day at work and obviously she suffered from heat as well. So she said that heat for me is not worse only different.

This is what I disagree with... I sweat so intense that I’m constantly dehydrated although I drink enough for conditions like that, my feet starts to hurt whenever temperature go above 20 Celsius, I can see spots, tinnitus goes havoc and I feel like faint ... and this is not after hard day at work. 

Look after yourself Cassandro. I get spells of not functioning too. Hope it passes soon. 

I agree. It’s exhausting being of the about 1 percent that has to adapt all the time! 

Yes, I agree the word JUST can sound like trivialisation. But I think people use the word JUST too liberally, perhaps with no meaning attached. Only your wife could explain what she meant. It IS difficult being different. It IS difficult adapting, but one must. As like a man born with one arm, we work with what we have. We be our best version of ourselves. Your wife was probably trying to encourage you, and she is invaluable. She too has had to adapt to being married, as with any couple. You can bring out the best in each other. Even if you find communication hard, communicate between yourselves. Nurture that companionship. 

You needed only to decline to drive him once, and then disengage with him completely

Yes, you are right, but I think because we live together it all gets complicated. Doing things for him is a way of protecting my wife from him and also a way of keeping my environment easier to cope. It works but only short term in a long run it makes things even worse. Long story. Tomorrow is his next appointment and I’m not going and I’m not going to explain myself.

I’m not saying autistic people don’t have difficulties and that they can’t be quanitified but rather who is to say that their difficulties are ‘worse’ than somebody else’s difficulties?  How do you measure that?

For example, an autistic person could have a difficulty with switching between tasks which could have huge implications on their life in so many ways but an nt person could have a difficulty in their life which impacts their life in a huge way also, but how do you even begin to compare the two and why would you? It’s not a competition in who can have the most difficulties.

And two people can have the very same difficulties but because of a difference in mindset, they will experience them differently. For example, one man with no limbs might sit at home all day, barely leaving the house, just getting by  and accepting that life is simply pretty terrible when you have no limbs whereas another man, born exactly the same with no limbs, could have a completely different mindset and go on to win gold medals at the Paralympics and have a truly fabulous life and the only difference would be, the mindset. One had a victim mindset and the other a positive mindset that recognises that we all have difficulties but it’s how we respond to them, with our mindset, that makes the difference. With a victim mindset there’s very little chance that the situation will improve or change but with a positive, open mindset there is every chance that you will discover a way to make life great, despite the difficulties. 

Most people with a victim mindset are not even aware they have it. They rarely go around thinking that oh, life is so terrible for me etc etc and in fact, quite the opposite, they usually give little attention to their difficulties, they simply accept them and they seem to accept them more easily than most people as difficulties are a natural bed partner of a victim mindset so there is less resistance to accepting them.

The victim mindset is often, only noticeable, when you hear a person talking about how difficult life is for them (nothing wrong with this, this is healthy and the person needs to be heard), but they are suggesting that their difficulties are greater than other people’s, or they’re harder because of their circumstances  or that nobody understands them and people expect them to be able to do this, that or the other when they can’t! Generally, the person with the victim mindset is the last to find out they have it, it’s much easier for somebody on the outside looking in, to spot, as the clues are often in what they say. 

I didn’t say you have to have a victim mindset to acknowledge your difficulties or to have difficulties but that a person with a victim mindset will always think it’s life is harder than other people’s and will have a ton of proof that they can readily whip out to prove to you that their difficulties are indeed harder than other people’s. But in all honestly, can one person really say that their life is harder than somebody else’s? We all experience the world differently and what is hard to one person is easy to another. 

A victim mindset will always think it’s life is harder than other people’s lives

You don't need to have a victim mindset at all.  If you have difficulties with certain things that other people either find easy or do without having to think about them, then you have difficulties.  That isn't to say they can't be overcome, or even used to one's advantage in other ways. You would be able to quantify these difficulties better if you worked with autistic people and saw some of the struggles and challenges they have.  Even the higher-functioning ones.  Disability, or 'different ability' in our society is largely a social construct.  The disabled are expected to adapt to conditions, rather than society accommodating them more. 

I don't go around thinking to myself 'Oh, woe is me!  I have no idea why I can't seem to make friends or handle relationships.  I have no idea why I have anxiety attacks over seemingly trivial things.'  At the same time, I accept that I have difficulties in some areas of life.  Every autistic person has them, to a greater or lesser degree.

You didn’t have to refuse to drive him, three times, and you certainly didn’t have to give him a reason. You needed only to decline to drive him once, and then disengage with him completely, because just the action of being involved in such an interaction at all, will require you to have a period of recovery time. If he doesn’t like that, that’s not your problem, it’s none of your business. You don’t have to take the responsibility of him on your shoulders, unless somebody has a gun to your head of course. 

I can see that you’re trying to tell me that your life is harder than other people’s because you’re autistic. Whether that is true or not, does holding on to that mindset, for dear life, help you? Or would it be more helpful to say to yourself, I’m autistic, I love and accept myself, I identify as autistic, it guides my life but it doesn’t define who I am. How can I make life more comfortable for myself, knowing, the difficulties I have with changes and heat and social situations etc?

I can see you already employ some tactics. I recognise them in myself. And I understand your challenges, I really do. How could I not? I’m autistic. But I have learned through life that it is only my mindset that will ever make life easier and more enjoyable for me. If I persist in refusing to part from a victim mentality mindset, then I will continue to face these daily challenges and the situations will not get any better. If I lose the victim mindset and decide to take responsibility for myself, I become open to ideas and opportunities that really will make my life better because I am solution focussed as opposed to having a defeatist focus. Neither way is easy but I like the results of one over the other. 

You have understood that you struggle with setting boundaries ~ I don’t even really know what a boundary is and I don’t like the sound of them and don’t want them. I have lived my life in what could be described as a closed solitary prison. I don’t want to put up any more boundaries. But I’m slowly learning what boundaries are and why they’re important. So you’re way ahead of the game than me. At least you know you struggle with them. I’m only just figuring out what they are. Instead of complaining about how hard life is for you, why not put some effort into learning how you can improve your boundaries and spend time practicing them. I bet if you put as much effort into learning about and practicing boundaries, as you did into complaining and playing the judge, you could have great boundaries in no time and maybe like me, you will rarely ever see your family! Lol! I love my family but I feel stress around them so I don’t spend much time with them and to my surprise, they seem to be ok with it. They’re probably glad! Lol! 

Best wishes with it all. You’re doing great. Truly. Please don’t take anything I’ve said as criticism. I am not somebody who could criticise anybody and I’m still learning and to me, you sound like you’re doing a really Stirling job. As you said, work on the mindset. It’s all a process and we all learn in different ways and in different time frames and the one thing we must never do, is criticise ourselves or give ourselves a hard time. Life can be very difficult. I’m not taking that away from you. I hear you. Now go and tell your wonderful wife how much you love and appreciate her and I can tell you from a female perspective, she just wants you to know that she exists as well, and life isn’t always easy for her either and I’m telling ya, I couldn’t live with an autistic person, so she deserves a medal. When we put our focus on somebody else and do something nice for somebody else, it changes our mood and always makes us feel better and I think your wife needs to hear that you hear her as well. 

A victim mindset will always think it’s life is harder than other people’s lives

Yes I agree ... I’ve got to work on my mindset. There is no doubt about that and probably this is what my wife wasn’t happy about. Saying that quite often I do struggle with setting boundaries. Example: Friday afternoon, my father in law has a appointment with a nurse, he refuses to go on his own because of his poor English (which is a big issue for me because I personally wouldn’t feel allowed to stay in this country if I wouldn’t make an effort to learn) I go with him anyway and I perform quite well in set social situations (as long as I can stick to my “script” and stories for social situations). He uses his illness and poor language skills to make me do things for him, including driving etc. Friday afternoon and is the most difficult part of the week as routine changes from work to weekend, heat makes me feel dizzy, confused ... I do avoid driving when I’m distressed which sometimes means that I have to get somewhere on foot or I’m not going at all. So I say that I can’t drive ... but he is not listening and says that he can’t move (which is not true). So my point is I had to refuse to drive three times and with details explain why and prove that his discomfort with moving his legs in this situation it’s nothing compared to my sensory issues etc. 

Can you “see” what I’m trying to say?

At the moment, I think things are more difficult and it's not just society, it's me. I'll try to explain what I mean on these forums soon, but suffice it to say I'm not functioning to my own satisfaction, and it's probably related to being atypical.

Hahaha I think my thighs are pretty similar and I like them, but I’m quite sure they’re different to everybody elses. 

:)