Published on 12, July, 2020
Firstly, sorry this is probably going to break the forum record for the longest post ever written! Thanks in advance to anyone who manages to read it all. There is a brief mention of suicide in this post - mods, please add trigger warnings / edit etc if you need to, I've put one in the title.
Before my autism diagnosis I have been diagnosed with so many different mental health and physical health conditions including chronic fatigue syndrome (since age 16, 20 years ago), ibs (age 18), depression and anxiety (age 22), bipolar - (age 28), fibromyalgia (age 32), Borderline Personality Disorder (age 35). I also have type 1 diabetes and at long last an ASD diagnosis. I now know that I'm definitely not bipolar and don't have borderline persality disorder, it's autism. I am starting to wonder if most of these issues are actually a form of very long term burnout after childhood trauma, being in hospital with diabetes and dealing with school.
Since the age of 16 I've had varying levels of exhaustion, brain fog, inability to deal with everyday life stuff and what I thought were some kind of mental breakdowns and I now think are probably meltdowns.
This has become significantly worse in the last year or so and I don't know what to do about it. I have gone from being highly intelligent, highly functioning and (in my own way) sociable and organised to being an anxious mess, can't cope with everyday tasks like tidying up, putting the dishwasher on, getting ready for bed, deciding what to do at the weekend or what to have for dinner. I have meltdowns several times a week (yesterday it lasted 5 hours) usually over minor things like going to work, changes to routine, changed plans, new tasks, not knowing what to have for dinner... it's like my brain is fighting me and shutting down. I can hold them off for a while but I can't stop them.
Unfortunately my meltdowns have become really bad and terrifying, I have strong suicidal thoughts and a strong urge to hit myself in the head. I even have them at work and I think I'm scaring people. I don't feel able to talk to my GP or counsellor about how bad they are because I'm worried I'll be forced to go to hospital which would be my worst nightmare (I have a phobia of medical stuff) and I don't think it would help, I've had bad reactions to antidepressants in the past. As soon as I've gone through the meltdown my brain feels clear and I feel a sense of calm, as though I have no choice but to go through them.
I am hoping that someone here might be able to help me in the following ways:
For those of you who are worried - I'm safe, I have an agreement that I phone my husband when I feel a meltdown coming and we have plans in place to keep me safe. I just don't want to keep going like this for the rest of my life, something needs to change which means I need to either get help or understand what's happening to me.
Thanks again for reading.
Sorry to hear that you're struggling too, it seems that so many of us are at the moment. I think you're right about it being cumulative. I hope you get some rest and are feeling better soon.
Thank you I'll have a read. Sometimes it's exhausting to find my way around a website so it's really helpful to have the links here.
Thank you Dogtooth, I love metal too so I can understand how it can help your mental health, it's not all negative and depressing, I find it calming and uplifting. I tend to find pop music very annoying because it seems so fake and doesn't reflect my life at all.
I’ve gone on the sick as I can’t cope at work. I believe it’s autistic burnout. I think it’s cumulative because I used to be fine too . My Join the gym so you have things to do. Someone posted this the other day: committees.parliament.uk/.../
Hi Natalie, Sorry to hear you're having such a difficult time with meltdowns and burnout. We do have some advice pages here on the NAS site about these topics that might be of some interest to you: https://www.autism.org.uk/advice-and-guidance/topics/mental-health/autistic-fatigue/autistic-adultshttps://www.autism.org.uk/advice-and-guidance/topics/behaviour/meltdowns/all-audiences There is some information about the causes and strategies for coping with meltdowns and autistic burnout/fatigue there, the meltdowns page is more targeted towards parents/family members but could still be useful. I would also encourage you to look at the resources linked on our urgent help page if you need someone to contact when you do have suicidal thoughts: https://www.autism.org.uk/contact-us/urgent-help - it's good to hear you have a plan in place already to keep you safe during these times though. Hope this is of some help,Ross - mod
I can identify with a lot of what you have said.
I am 43 and was only diagnosed two years ago. It felt like all of a sudden my ability to cope and mask was slipping and i was coming apart.
I too have long standing suicidal thoughts, to the point where a couple of years ago a neighbour was alerted and used a key and brought me back round. The hospital told me it was a nearly successful attempt.
I have self harmed since the age of 8 and my legs are quite badly scarred by this age. So i do empathise with a lot of the way you are feeling.
I use music mainly to help me escape. I usually use Metal to help my mental state, which is odd in itself i know!!!!
A therapist told me to think of a mantra that resonated with me and hand write it several times each morning. So i also have books and books filled with a Cradle of Filth lyric that has kept the suicidal tendencies at bay for a while now. Feel free to use it if you think it helps, or find your own, but it has really helped me. Mine is:
'Suicide is a tried and tested formula for release'
I get to work early and take out my book. (I keep it next to a little exit kit in my office. The kit and mantra kind of work together.) I write it out for 20 minutes before work. It allows me to realise that if life really is that bad, there is a way out. The option will always be there, so how about get through today, or even the next hour if im feeling particularly low, and se how it goes.
Having that choice has been a comfort blanket and has actually kept the darkness at bay to some degree.
I hope this helps, or at least makes sense. If not just ignore me. Not all my cylinders are firing anyway so i'll not take offence.
Love, Love and love.
Thanks for the reply Baked Potato 64 (great name by the way, I love a baked potato!). It all sounds so simple but it's not.
They're telling you this directly and you're not acting on it? Plain and simple, take some time off.
They're telling you this directly and you're not acting on it?
Plain and simple, take some time off.
Work are happy for me to take some time off if it's what I want but I feel guilty and I feel like a failure if I do. My husband can’t take time off because his holiday is limited and he's already booked his holiday for the year. I don't have any family that I want to have contact with and I don't have many local friends and the ones I do have work full time and have children. I don't like crafts or have any hobbies that I can do on my own at home but I'm too tired to go for a walk or do anything active. I could try gardening but would need help getting things out and deciding what to do, my husband might be able to help with that before work, I'll ask. Maybe his work could give him some time off unpaid to support me I'm not sure and I feel bad for asking because he already does so much for me.
Conversations with your GP are confidential, if you're telling them "I'm kind of okay" when you're not, then it won't help the situation either.
I know they're confidential in theory but if I start talking about wanting to end my life I'm afraid they will lock me up in a hospital "for my own safety". I know this is unlikely but it's an irrational fear.
I've been referred for 1 to 1 autism support and am now on the waiting list but it's over 12 months. It's definitely worth being on the list though, I'm hoping it will help when the time comes.
Sorry if that all sounds a bit blunt and negative, I don't mean it like that at all, I'm just writing as I'm thinking! Thanks you again for your help x
Little Owl said:I keep being told to take time off sick from work and rest but part of my autism (I think) is that I have to be busy all the time and I can't be on my own.
Plain and simple, take some time off. Keep yourself busy in the time off with something else that won't work you into burnout. Go for a walk, go on holiday somewhere. Unless you take time off to recuperate and keep forcing yourself into work, this'll just get worse and worse.
Get your husband to take time off with you, or spend time with family, friends etc.
Conversations with your GP are confidential, if you're telling them "I'm kind of okay" when you're not, then it won't help the situation either. Sounds like you could do with 1-1 autism support, there may be a local organisation to support you.
There'll be a waiting list (I'm on one now, it'll take ages) but it's something to join and aim for.
Thank you Number, much appreciated. I understand the lack of spoons, take your time x
Hello Natalie,
What you write all makes perfect sense to me and resonates well to key aspects of my life experience. You might be pleased to hear, therefore, that I have been able to transition successfully into a much calmer and more accomplished mode of life, so it is reasonable to suspect you can achieve the same.
I don't have spoons right now, but I thought these choice words now might cheer you along and sustain you in this decidedly depressing and upsetting part of life's journey (for some of us.)
I'll be back to you at my earliest sensible opportunity to put some meat on the bone.
Kind regards
Number.