Feeling Fragile

Sorry to hear that you have also had tbi, I used to call it tbi but now call it abi (acquired brain injury), how long ago was it? I was lucky in that I didn't lose consciousness but you are definitely right it does make certain Aspergers symptoms worse (fixed thinking, obsessions, perseveration, lack of facial expression, lack of variation of tone of voice, etc) as well as giving you a few more symptoms too. How are you coping with yours?

Ah so you too have had TBI (traumatic brain injury) - mine was 2 weeks unconscious and I have been much worse since. I feel the aspergers symptoms are made worse by the poor brain frontal lobe function, and now 3rd n palsy with diploplia as well.

I did wonder if the two might interact and complicate each other. I don't have EDS, for my co-morbid see below for my reply to bookworm. I wish I'd been diagnosed when I was younger but I can't change the past. Thank you for your kind words. You keep positive too :-)

I have to be honest, I don't think any of us on the spectrum will ever find it easy but we may just get better at finding ways around our problems. Well I hope so anyway lol

in reply to @Kitsun - Yes EDS is very painful and yes ASD does make people more sensitive to pain. However, you are a strong person to be coping as well as you are. I find it hard to sleep most nights and when I do I dream heavily about stupid things and occasionally have nightmares. I was 19 when I was diagnosed with Asperger's Syndrome. I agree very strongly with you. Keep positive and try and get an assessment for EDS at Kings College, London.

Thank you for the recommendation :-)

Thank you Bookworm. I'm still a bit up and down and I suspect that that will continue for a while. I do consider myself a strong resilient person, I've been through a lot of bad things in my life and always managed to pull myself through the other side. I make no secret of the fact that I have a co-morbid brain injury that I acquired nearly 12 years ago. The process of grieving and loss and adjustment that I had to go through after that was absolute hell on earth. It's the episode of depression that I've had where I've not been able to see the light at the end of the tunnel, it was so horrible, I actually ended up 'in' for a couple of weeks (informally) for that one as I was at absolute rock bottom. But, I did get through the other side emotionally, it will take more than being hit on the head by a large recycling truck to keep this girl down :-) So now, yes I have to go through a period of adjustment after my Aspergers diagnosis. But, it won't be as bad as after the brain injury, I haven't lost anything, I don't perceive that I need to grieve, I just need to rejig my cognitive schemas a bit to accommodate knowing that I have Aspergers and get to understand how that affects me. I'll get through this ok, of that I am confident. This up and down, anxious phase is just something that I have to go through to get to being ok again.

Thank you for sharing your experience and I'm sorry to hear that you are feeling fragile too at the moment. Incidentally I was reading something the other day about the possible link between ASD and Elerhs Danlos Syndrome, it sounds very painful, do you find that your ASD makes you more sensitive to pain? Co-morbids sure do complicate matters! I have my own co-morbid and it makes me a lot more 'neurologically complex' than I would be without it. Our tendency to over think overthink everything doesn't help does it? I hate going into overthinking mode though I'm better at managing it than I used to be, except when I'm trying to get to sleep! I was nearly 38 when I got diagnosed, I've spent my life until then thinking there was something 'wrong' with me or that I was just a complete weirdo so it's a relief to finally have an explanation, but an adjustment too none the less.

Laura James book Odd Girl Out,may be of interest to you

It is a big shock when you are diagnosed and a really confusing time so I get where you are coming from but you seem like a strong person to me so I'm sure you will get through this. I'm still having repercussions of my diagnosis now at work, as you know, but I'm still glad I have my diagnosis.

Hi Kitsun, firstly don't apologize. I feel so fragile sometimes I cant even make it into work or college.

I feel very upset at the moment and sometimes I feel that it is reassuring that I am not the only one feeling this way.

Emotions seem to drain me Physically not just because I have ASD but also because I have Elerhs Danlos Syndrome.

It can get to the point when things get extremely painful, even at one stage I have had to use walking sticks. Life can be a nightmare sometimes when you have ASD and all of the comorbids that go hand in hand with it. That's why I guess you feel so snowballed. You know you are not alone.

You'll find everyone on here has felt the same way at least once in their lives, sometimes its hard to be yourself when '@S£$ happens. We all need our down time. I'm overthinking everything right now too, I feel that I need more support at the moment from people around me sometimes it feels like I'm hanging from a thread. I have been feeling this way since before my diagnosis and sometimes medication and talking therapies can help.

I found that my diagnosis was empowering for me because I got diagnosed at 19 after being through a hell of an early life. If I was never diagnosed I would have been locked up for MH issues, and even though both events have occured in my life at least I knew I was different and that my specific needs needent always be a hindrance and sometimes they can be a great strength, even though at college people see it as something that is "Wrong" with me, my family is proud of how I've coped with this mountain of stress. Try and make light of the situation- I know its hard but diagnosis can be encouraging even though sometimes its not the light at the end of the tunnel.

That was kind of my point

Kitsune said:

Ah but dishwashers and draining boards have to packed the right way or things don't get washed/drained properly, everyone on here knows that

Yeah, but everyone here is either definitely or probably 'on the spectrum'...! 

Driving with loud music playing helps me too.

Stay safe Kitsune

Ah but dishwashers and draining boards have to packed the right way or things don't get washed/drained properly, everyone on here knows that.

Going for a drive is helpful to me as I can shut my brain off while I'm driving, not the bits that I need to drive safely obviously, I just mean it allows me to refocus and calm down a bit

Honestly, she's not terribly understanding... though that sounds harsher than I mean it - I think she can no more easily understand why I was struggling than I can understand why my repacking the dishwasher the 'right' way upsets her so much...

Telling her was more a case of 'using my last spoon' to try to buy me some time/space to hopefully recharge.

If going for a drive is something you find helpful then that sounds like you did the right thing.

yes, guilty as charged :-) I have been beading more lately and it is a good way to forget about stuff, especially if it's a complicated pattern that I really need to concentrate on. Actually, a friend bought me a new beading pattern for Christmas, I might have a look at that tomorrow

It would appear that the 'cognitive overload' process is quite a common phenomena then! I'm glad that you managed to pull yourself out of your shutdown. Is your wife understanding? I tried talking to my husband the other night, to be fair trying to talk to him about anything after he's had a few beers is pretty pointless, I should have waited until the morning, but I really needed to talk, I started talking, he decided to play me a u-tube clip of a child chanting 'millwall, millwall, millwall, eff you' because it was supposed to lighten the mood apparently (drunk logic!) It didn't remotely lighten my mood and just annoyed me so I went for a drive instead. Honestly, I can't talk to him about anything, that's why I'm always on here chatting to fellow people with ASD! 

I think it helps to get an assessment, to know one way or the other, it saves a lot of 'what ifs'. With regards to how it will affect you and those around you. I don't know, but as you just said to me, lean on people here, keep talking to us :-)

Was it you that put up the post about craft activities? I find craft activities can be some of the best things to do when I feel overwhelmed. It takes up all my concentration and I forget about all the the things going round and round in my head.

Thank you. I don't feel upset as such just overwhelmed by the adjustment process. I don't know why I'm surprised to be honest, of course it was going to hit me at some point, duh me! I think I'm just going to have to deal with feeling wobbly for a while until the dust settles.

Very interested in responses to this as I'm in the process of seeing a psychologist. Initially I wasn't bothered about the diagnosis, but starting the process sent me down the 'cognitive overload' process you describe Kitsune... I had kind of a 'shutdown' last Wednesday, but telling my wife I was struggling, going for a hard running session and letting my psychologist know (ahead of a session on Friday) pulled me round.

I've now decided I want to know 'a' diagnosis - even if it's just "years of low/moderate trauma combined with standard male-pattern repression of emotion"... but I really don't know how that's going to affect me and/or those around me.

Keep your chin up Kitsune, lean on anyone you have, keep talking to us...