... doesn't mean that I can fulfil them.
And I have no idea how to bridge the gap. Life is becoming just too hard.
... doesn't mean that I can fulfil them.
And I have no idea how to bridge the gap. Life is becoming just too hard.
Hi Jenny - it sounds like you’re having a difficult time - I’m sorry. What’s happened?
Hi there. It is simply the chronic nature of all of our problems taking its toll over time. I'm tired and emotional and probably need a good sleep.
Our cannabis prescription is still helping but, even at that, I have occasional breakthroughs of very negative emotions, especially during annual "milestones" (for which read "millstones" in our case) such as birthdays, anniversaries and Christmas. Unfortunately we are now entering a two month period where a lot of these cluster together. And this isn't helped when I can see others in my family buying then renovating their own homes, getting jobs and relationships and generally getting on with their lives. And yes, the conventional ways aren't necessarily our ways, but there's been a long dearth of anything positive happening around here, whether in the orthodox ways or not.
In a way, I can cope with specific things happening - i.e. one off negative events - much more easily than a daily grind which doesn't let up. Maybe I'll just have a cry then a sleep and re-emerge feeling as though I've had a good vent and be good to continue.
Hi there. It is simply the chronic nature of all of our problems taking its toll over time. I'm tired and emotional and probably need a good sleep.
Our cannabis prescription is still helping but, even at that, I have occasional breakthroughs of very negative emotions, especially during annual "milestones" (for which read "millstones" in our case) such as birthdays, anniversaries and Christmas. Unfortunately we are now entering a two month period where a lot of these cluster together. And this isn't helped when I can see others in my family buying then renovating their own homes, getting jobs and relationships and generally getting on with their lives. And yes, the conventional ways aren't necessarily our ways, but there's been a long dearth of anything positive happening around here, whether in the orthodox ways or not.
In a way, I can cope with specific things happening - i.e. one off negative events - much more easily than a daily grind which doesn't let up. Maybe I'll just have a cry then a sleep and re-emerge feeling as though I've had a good vent and be good to continue.
Respect and love to you - till the next time. x
Funnily enough, that was one of my dad's favourite sayings too. 
I also believe we can catch up very quickly, basically because we are drawing on things that we have always, at some level, already known. It might not have been put into words. We might not even have had the words. Or we might have believed that we were non autistic and identified with our own masking. But we knew and all of the masks, defences and strategies that built up around our core have served their purpose, maybe still serve us in many ways, but we're onto them and can purposefully free up that core - the people we were supposed to be.
Yes, hope springs eternal.
And I veer between existentialism, with a dollop of nihilism, and a strangely deeper-running spirituality. But of course that latter is very personal and hard to describe.
Still, I do wish that I'd felt able to move closer towards what I consider to be my authentic self much earlier on in life as the real growth could have started sooner and I could have been of more help to my family
Honestly, it's plain weird. Things you write ARE me!
Despite our late start in self awareness - I believe we will catch up and then surpass our wildest dreams.
As my dad often said "Hope spings eternal."
I've missed you around in recent weeks Jenny - nice to have you back here. You always seem to express feelings that I am oh-so-familiar with in the best words imaginable. You are a wizard who seems to know the same dark dark corridors that I have wandered through, but your words are an extremely effective torch !
Many thanks! I am often around here still but sometimes feel bereft of words - things can get very intense here inside my head and there are some days when I really need to find my torch! :)
And yes, I go through the usual patterns of venting and crying before buoying up and continuing with life. It's a long way from what I envisioned but I sometimes wonder whether I am beng shown something else here, that I needed to be jolted from my formerly very conventional and very false life. It is also very hard, when you're in the thick of it, to differentiate between necessary growing pains and purposeless suffering. Perhaps, in a sense, none of it is purposeless. And I veer between existentialism, with a dollop of nihilism, and a strangely deeper-running spirituality. But of course that latter is very personal and hard to describe.
Still, I do wish that I'd felt able to move closer towards what I consider to be my authentic self much earlier on in life as the real growth could have started sooner and I could have been of more help to my family and others. This is why I'm so pleased to see autistic communities and autistic-led training and resources growing.
And yes, the conventional ways aren't necessarily our ways, but there's been a long dearth of anything positive happening around here, whether in the orthodox ways or not.
I can cope with specific things happening - i.e. one off negative events - much more easily than a daily grind which doesn't let up.
I've missed you around in recent weeks Jenny - nice to have you back here. You always seem to express feelings that I am oh-so-familiar with in the best words imaginable. You are a wizard who seems to know the same dark dark corridors that I have wandered through, but your words are an extremely effective torch !
I'm sorry that you currently have "carers fatigue." Wholly normal. Wholly awful. It will pass.
I'm glad that you can all still all have a laugh about the nihilistic hopelessness and pointlessness of it all at the moment - in terms of dusting. That's hope and joy right there !
Stick with it. Vent away at us / me all you need. Have a special coffee and a cry and a sleep.
Tomorrow awaits. SMILE.
Lots of love to you and yours.
Yes. It all feels like too much and I mistrust services after all of our negative experiences with them.
I feel blocked or thwarted. My sister is going to her daughter's graduation this weekend. I daren't leave the house because my husband can't cope and I fear what I might find when I return. The coffee definitely helps but it's not looking as though I can turn things around here. Locked in. For reasons which, although I have a vague idea about, ultimately remain obscure and not amenable to our efforts or good intentions.
I'm doubting that I have what it takes to be a longer term carer, although I suspect many carers will feel the same. I honestly didn't think that parenting would get harder as they got older.
Yes. It’s not surprising we have days like this. It’s a lot to deal with - and so often without much help or even encouragement. I think sometimes you just have to let yourself admit that it’s hard and that - today - you have to have a moment where you let yourself say “I can’t do this” - even though you know you’ll get up tomorrow morning and feel that you probably can. And a stiff drink or whatever else helps is a probably a good idea :)
I was just thinking today that just knowing there was a bit of help out there if we ever needed it would make a big difference. I don’t have that. My mum has dementia and my dad is completely unsympathetic, unhelpful and judgemental. My husbands parents are both dead - and our siblings are not there for us on any level. It’s really hard not to have family who care. But we are where we are and we can’t change that. We don’t have close friends - like many autistic people. So it’s just us - and on days when I feel particularly lacking in confidence and vulnerable I feel the lack of support really deeply. It helps to come on here and know that many other autistic people understand. I hope you enjoy your coffee - I only wish I had something similarly soothing!
Absolutely! Thank you.
And yes, we may feel like failures, but we absolutely aren't. We also often need to ignore any sociatal standards, including our internalised stuff, because we're in an entirely different situation from the majority and those take no account of what we're struggling with. I find it hard to be on a different path from many families around me, but I have to, and often do, find some intrinsic worth in all of this. It's just that I also need some time and some creature comforts. At the moment I am enjoying a "medicated" coffee. :)
Hi Jenny,
coincidentally I had a bit of a cry today for similar reasons. It can all feel so overwhelming sometimes can’t it? It’s not just one thing - it’s EVERYTHING. And the lack of support. The news is depressing too - you feel if there are no services now it’s only likely to get even worse! We feel very isolated sometimes - there’s no help really. I think having a cry is probably a good thing really. I feel I’m always trying to be strong - and I get so tired and worn out. It’s best to let these feelings out. I’m sorry you’re feeling this way too. It’s not surprising- I know that like me you have your own challenges and are also doing you best to support autistic children with all their challenges. My youngest is feeling very down - and everything I try and do to help him this week has not helped at all. This makes me feel like a failure as I want more than anything in the world to help him. Sometimes we have to accept that we can’t always help - however much we want to. But as you say - have a rest, a drink or whatever helps, and tomorrow is another day - and hopefully a slightly better day. And if tomorrow isn’t better - then maybe next week. Or next month. But life is too precious to give up on it all. x