I would really like to learn of how other people cope with long term physical illnesses and how you feel your Autism impacts, if any, on your ability to be able to cope with it physically and mentally. For example, do you think you are more sensitive to pain?
I have been ill a long time, 20 years now, but only diagnosed recently with Autism Spectrum Disorder.
For me, I feel if I hadn't have become ill I probably would never have been diagnosed with ASD as getting ill completely ruined my life and changed my personality, it also hugely changed my ability to be able to cope with stress as being extremely physically active was my coping mechanism (in retrospect). What I'm trying to say is that before I got ill I could take or leave socialising, I liked it sometimes but it was not something I was able to sustain 24 hours per day 7 days per week. When I read of people with ASD being depressed because they can't socialise, that's not why I'm depressed and I'm worried my health care worker just isn't getting this.
I feel I've never come to terms with losing those physical abilities and every single day I have to live with awful physical symptoms and fatigue, both physically and mentally. I never get a break from it, my body never feels comfortable.
I had several years of being on several different medications to try to help with the symptoms but eventually came off all of those as I was starting to get problems with side effects and interactions. So I always feel trapped in that whatever I try to do is no good. This causes me a great deal of depression, more so than having the ASD, that is my opinion anyway, but my health care worker keeps saying how now that I'm diagnosed with ASD perhaps this will help with the anxieties and then if that's reduced with the depression. I keep trying to tell them I think our interventions for the ASD will be limited unless I can get help for the depression because of being physically ill.
I've been told I can't get counselling for this on the NHS because of the ASD and the only counsellor they do have didn't really do much for me and those difficulties also contributed to the ASD issue being raised.
I had CBT through the NHS in the past for an eating disorder which was really good, it stopped the behaviour. I can't remember a lot of what it was we did, but it worked.
My depression also doesn't affect me in a 'typical' way, I don't lay around on the couch, I do as much as I can, but all the while just feeling utterly depressed and what the point of it all is.
Tried numerous drugs for depression, extremely sensitive and make me feel worse or a lot more anxious.
I'm seriously ill with numerous health problems. I wasn't diagnosed as Asperger's but my inability to deal with stress and the continual bullying at work and some other serious events meant I developed Pan-Ulcerative Colitis. This causes a disintegration of my whole intestine leading to Sepsis, internal bleeding and a bunch of other problems.
My undiagnosed AS meant I could maintain my health much better than others with the same condition by modelling and mapping my body's rhythms. (I'm 20 years down the line where most people only manage 4-5 years).
Unfortunately, I was intolerant of all the normal meds so they quickly worked up through the range until I was on heavy Chemotherapy.
Unfortunately, this resulted with me having no immune system which made me vulnerable to low-level infections.
Unfortunately, I ended up with Meningitis which blew my brains out.
I now suffer from CFS and Chronic pain and serious memory problems now - as well as the original U.C.
I was diagnosed with Aspergers 10 years ago so I fully understand my inability to deal with stress - a bit too late.
I keep being diagnosed with serious depression, but as I don't really understand emotions, I can't work out what this means. I've been on all the usual meds over the years, but I can't function in the fog they cause so I prefer to have a clear head without them. I can't tell if the psychiatrists are projecting their own image of how they would feel in my position.
Probably seems a bit odd, but I carefully self-harm to effectively redirect my brain onto a different, real pain rather than the mentally-generated pain/despair - not that I advocate that for anyone..
Thanks for the reply plastic. Am I reading that right when I think you're saying you can tolerate more physical pain than others with your condition?
That is very interesting what you say about not really working out what the serious depression means because of difficulty with emotions, I have that difficulty too but apparently depression can manifest differently in people. That's a phrase I've heard a lot now since ASD diagnosis and I think it really means we can't fit you into any box but we know you have problems.
You're last paragraph, does that mean you also think then the experience of your physical illness is worse because mentally you make it worse? And if so, how? Thanks
Hi - I've no idea how other people experience pain so I can't compare that. I'm the only one experiencing my pain so I'm the only one who knows how much I can tolerate. The pain used to come and go in sympathy with the UC flares so it was a good indicator of the severity of the flare.
Since the brain injury, I'm in that pain all the time. The best analogy is if you imagine falling down 10 flights of concrete stairs bashing every bone, muscle, joint and straining everything at the same time. Similar to the pain when you bash your knee on a low table as you walk by - it's a deep pain that is inside and you can't hold it to get relief.
Another problem is the huge doses of steroids over the years ripping Calcium out of my bones and depositing it in my muscles. It means I have Osteoporosis and my muscles are solidifying. The bone fractures are painful too - ribs hurt like a *****.
Some people are genetically pre-disposed to certain conditions and UC is normally triggered by stress. (stress does terrible things to the digestive system). My total inability to deal with stress and anxiety normally (like most of us) meant it was onlty a matter of time before my body gave out.
Most people with UC (as extensive as me) only last a few years before major surgery because they accidentally mis-manage themselves. When you end up in A&E and intensive care too many times, decisions have to be taken to save your life.
The surgery often has serious, life-long complications and I'm not sure I can mentally accept the body image of being hacked around like that.
Depression is another personal thing so it's impossible to truly put yourself into anyone else's place to feel like they do and compare.
You ask if my illness is worse because I'm AS? I don't know - maybe - but my AS 'superpower' of being able to accurately measure and track my body means I'm able to maintain my health better than most. The fact I'm here with all my bits still in me and not in a stainless dish would seem to prove that.
I'm so far off the consultant's graphs that they don't know what to do with me - I'm unique - so they are relatively happy to let me manage my own health and they free-issue whatever drugs I need to keep myself going. They keep trying to push me onto Biologics but they understand my reluctance to risk my body again.
Hi Plastic, I don't know what to say to that as I'm terrible at that kind of thing, but I can say it is incredible how you are managing. I wish my ASD would work for me in the same way (I would have been diagnosed as Asperger's but now with the diagnostic changes have been told it is ASD) I think it might be making things worse but not sure. Unfortunately I don't seem to have a superpower!
I'm sorry you have to go through all this.
I've got no diagnosed physical illnesses or disabilities but have had physical problems for years. I struggle to digest most foods, including ones people wouldn't expect. I have weak muscles. Even kneeling on a floor for 10-20 seconds is painful.
I feel more vulnerable because of the physical issues. I've met people on the spectrum who are physically strong and notice they're more confident than me.
Hi - thanks - but it's nothing to brag about - and if you met me, you'd think I look really healthy.
My superpower was an eidetic (photograhic) memory - I could juggle massive amounts of data to plan my health regime. I lost that ability with the meningitis - but I had robust plans in place so I've managed to keep my body going.
I still do all that I used to - but much slower and I sleep a lot more than normal people. My huge positive attitude keeps me going when others would crumble.
Hi plastic after reading your reply it seemed many of the things you say were similar to how my dad coped himself with cancer.
I hope my story doesn’t in any way try to describe you. I tell this story as to try and understand how I feel about dealing with such matters myself and how my father did, your story sounds very similar. Apologies if it appears I am understanding how you feel. I don’t and do not wish to say I do.
After realising I was autistic I began looking back and truly feel both my mother and father were on the spectrum.
So many things suddenly made sense, things I just accepted as being like other people but truly weren’t.
my father was diagnosed with cancer and was told he had six months if he was lucky to live.
He refused to accept that, He seemed to understand his body and the cancer , he refused to accept it as a given that it had him and would control him.
He was an amazing accountant, figures were his thing long before any digital aids. Pages and pages row upon row of figures all added up in his head, always 100% correct, later in life he had a mechanical adding machine complete with chunky manual keys on it and a side handle which when pulled printed the figures out, after several hours of inputting the figures after tapping in each and pulling the lever for each set you switched a button to TOTAL pulled the lever and it would print the total below in a till roll type paper.
He would add the digits up in his head first, not needing to write them down as a sum , and always without fail he was correct.
My point being is he had a unique gift , amazing ability to store and retrieve vast amounts of data he had an amazing mind and had control of his whole body as well.
He drove the cancer away by sheer mind power, stubbornness, belief and understanding of the cancer and how his body worked, every muscle, joint, sinu and blood vessel.
He amazed every professional medical expert that he came across, he went against all the understandings they had.
He also knew when he needed treatment, what medication would work and which were a waste of time for him. They allowed him free reign on how he managed everything.
He had bouts of re accuring cancer in new places but each time he casually would say “ ok so it thinks it can beat me! Well it hasn’t so far and it will not take control of me, I refuse to allow it to exist within me.
He went on for five more years, he gave great hope and belief to many he met in the cancer wards, old and young. He always had a smile and a kind supportive word for all.
Hi didnt die of cancer, he died of an unknown ulcer that burst inside him one night, he sat up in bed one night and screamed “the devil just kicked me in the back”.
no one understood what had happened?
Apparently after he was rushed into hospital days later the specialist said my fathers scream that night was when it burst, the poison from it should have killed him then, the huge amount of poison had affected him so much so quickly he lost the control he would normally have.his local GP was called the day after he cried out, The GP wrongly diagnosed the return of cancer and prescribed high doses of morphine! Considering it to be the kindest thing for him. To take away the pain in his final hours.
the morphine kept him alive for several days albeit his mind was by now literally gone.
Even as he lay in his hospital bed as he was dying he refused to accept cancer was his end, he was right. He never gave into it.
Sadly he was too heavily medicated and had so much poison and morphine inside him they couldn't operate as the anaesthetic would have killed him. They didn’t have enough time to wean him clean of the morphine.
He was an amazing man, very intelligent, very kind and caring,
knew hundreds of people but strangely had no real close friends?
My point being some of us who have autism have huge ability to analyse everything, understand minute details, understand biology, medication, the effects, the harm they can cause, how to control things by knowing how they work.
myself I can negate pain, I too self harm but in a very small soothing way, just pressing my finger tips on sharp edges not to cut or cause bleeding, to induce a feeling of intense pleasure as I understand how and why it effects my brain chemistry. I get a feeling of euphoria which blocks out anything causing me pain be it mental or physical.
I wish you all the best and Have much respect for you.
You will deal with it. In your own way.
I hope you understand what I am saying regards our ability to control our own bodies.
Thanks for your story - I feel for you. Cancer is a horrible way to go and the last interactions with hospitals in our hour of need can be traumatic for everyone - I've seen it too many times.
And yes, I agree, we can be seriously ill but we don't need to let it rule our lives. A positive outlook and a refusal to give up can overcome many things. Too many people trust doctors over their own experience with their own bodies.
A big problem with UC is the speed of deterioration - I can go from a bit unwell to full-on sepsis in a few days - ringing the emergency team and having them try to book me in to see the consutant "Two weeks from next Thursday" is no use. It's why most sufferers end up in hospital/surgery so often.
I e-mail them when I start to go downhill - I let them know the situation, my weight, blood pressure, all the technical details and what I'm doing about it (normally a course of high-dosing steroids) and I ask them if the want any more information - a week later when they ring me back, I'm already improving so crisis averted.
Peripheral said:I too self harm but in a very small soothing way, just pressing my finger tips on sharp edges not to cut or cause bleeding, to induce a feeling of intense pleasure as I understand how and why it effects my brain chemistry. I get a feeling of euphoria which blocks out anything causing me pain be it mental or physical.
I've found holding my hands under a hot tap as it goes from cold to hot can be almost better than sex. Hurts a bit afterwards, but the all-over tingling as it starts to scald is intensely pleasurable - for a short time.
As I become more convinced that all this pain I've endured means I'm a stress simulation on an AI system, I tend to cut myself to prove there's still blood in there.
I think my wiring might be a bit messed up.
Managing sensation and pain is a fine art, it takes understanding .
I once watched a programme where it had a man paralysed from the neck down. As he lay doing nothing every second of every minute of the day, he decided to watch hundreds of medical footage to fully understand all parts of the human body.
He finally managed to control his hand and arm by shear belief and using his muscles as the wiring to send signals. He pictured every single part of the journey from mind to muscle, if he stopped thinking his hand would suddenly just drop.
Yes - I've seen a similar program about a bloke with cystic fibrosis using pain to make his life bearable. It's amazing how you can take advantage of your body's systems to keep you going.