Changing your life for the better after diagnosis.

[Straycatblue]

I touched on this a little I think in one of the main threads and I wondered if anyone was doing anything similar....

After getting my Aspergers diagnosis a few months ago in my late thirties and finding out that there is a reason for the difficulties i experience on a day to day basis I have started to make lifestyle changes to try and improve my quality of life.

For example, despite doing it for many years, my job as a nurse regularly causes me difficulties in terms of communication misunderstandings with colleagues and prolonged constant interaction with people in highly stressful situations.
As a result of my diagnosis I have realised I cannot continue and have taken the scary step to return to college to retrain in a profession that will not affect me so badly.

I suffer from bad anxiety and have started attending a counsellor/hypnotherapist to help with this.

i have also begun to refuse to go to social events which in the past i would feel guilty about if I did not attend even though they would leave me mentally drained for days afterwards and prone to meltdowns/shutdowns. Basically, Im putting myself first.

I find it difficult to go and get supermarket shopping at times and so have begun to order my supermarket shopping online rather than increase my stress by going in person.

Trying to get enough sleep is another one as i am guilty of staying up very late and i always find it more difficult to cope when i am tired.

Im interested to find out what anyone else is doing to make life better for themselves following their diagnosis (be it official diagnosis or self)

[Allofaflumble]

Hi Stray! Good to see you still around.

I only go to social events with family if possible. Still find them stressful.

I have been invited to a Christmas do with a bunch of people I barely know. Currently plotting my escape/get out and also wondering whether to be brutally honest and say I will find it draining.

I too have to steel myself to go to the supermarket. I go between 9-10 when it is super quiet. Too many missing items with my online shops. In the end i think they didnt believe me!

I have to be very careful to not absorb and take on other peoples' worries and problems.

Fighting my feelings of being defective and worthless takes a lot of energy, as does obsessing on past remarks that hurt or ny many and varied failures.

It is a full time job in itself. Cant imagine coping as a nurse!

[hiddenhome2]

Good thread and it all sounds familiar.

I've decided to let myself off the hook when it comes to feeling bad about not being like other people.

I do my shopping online too and only go to the shops if I feel like it.

I'm in nursing too and luckily only have to work part time otherwise I'd go crazy with all the unpredictable/unpleasant people I encounter. I plan on leaving altogether in about eight years once ds1 is adult.

I've told them at work that I don't do social stuff and am going to tell SIL what's happening with me as well. I'm sick of feeling awkward and embarrassed about it. We're not criminals, we have nothing to feel bad about.

[CrohnicallyAspie]

I have told all the people that matter about my diagnosis, and so don't hide my quirks as much- I stim in public if I need to, I have a collection of fiddle toys and chews, I take earplugs if we're going somewhere noisy or if I'm in the kind of mood where I know I will be affected, if I don't understand something I will try to ask.

I now know to pace myself, if I get lots of invitations (not just social events, I mean if I have appointments and things too) around the same time I will decline some and tell people why.

At work, my colleague is well aware of my difficulties, she writes everything important down for me, and if I'm having a bad day she will cover for me while I take a few minutes to myself. I work part time and that suits me so while I had planned to increase my hours once DD is at school, I don't think I will be doing.

[ToadsJustFellFromTheSky]

Tbh, I'm amazed at how anyone with ASD could ever work in nursing in the first place. This isn't a dig btw, if anything it's a compliment, because I could never be able to do it. All those unpredictable hours and shift work, the touching people...just no thanks. Even the thought makes me feel a little bit sick.

[hiddenhome2]

I don't mind the having to touch people, it's others touching me that I can't stand. It's very strange. I'm a caring person who wants to help others and I wanted job security which is why I trained. I also liked the idea of being in a uniform and hiding behind the role ifyswim. People don't see weird old me, they just see a nurse who's there to help them. It's like being an actor.

I find the unpredictability of people too much now. I'm not managing well and have very off days where I can't actually function at home due to feeling so mentally drained. I like the clients, but their relatives can be very hostile and I sometimes manage to cause offence with my practical, forthright demeanour. I don't mean to, it's just that I can't do the charming, flowery stuff that people like. I shut down if people are unpleasant though. It freaks me out. I'll just leave them to it. The public are very rude and entitled now

I'm the one in the background solving the problems and getting the job done and I leave it to the others to do the chatting up.

[ToadsJustFellFromTheSky]

I see what you mean about the job security thing. People always tell me I should be a nurse because apparently I'm caring however there is no way I'd be able to do it. I get that it's a secure job but there is just no way I would cope with all the inflexible shifts, the physical contact with people, the lights and sounds of working in a medical setting, etc. Even the thought makes me nervous.

[hiddenhome2]

That's why I work in a care home. I couldn't cope within a hospital setting

[bodenbiscuit]

Straycatblue - did you manage to get a diagnosis on the NHS? I met the criteria to be referred but I've heard that the NHS aren't very good at diagnosing women. My mother agrees I have AS - she apparently thinks it makes perfect sense and fits exactly after so many years of being told I had bipolar or borderline personality disorder.

Managing my mental health is the main reason why I feel a diagnosis would help.

Like you, I've been thinking of ways to make my life easier. I also hate supermarket shopping. I took dd2 shopping today and I am completely exhausted by being in a shopping centre. I get overloaded by the lights and colours/ noises etc.

For years I've just felt that I'm pathetic and that's why I'm not like other 'normal' people. But I feel a lot better knowing there might actually be a reason for this!

[hiddenhome2]

The NHS struggle to diagnose anything more than a broken leg

Ten years in and out of CAMHS and they couldn't manage to diagnose ds1 in spite of glaringly obvious developmental problems. Just because he didn't fit the exact mould.

[bodenbiscuit]

This does sound like a nightmare. The Lorna Wing Centre costs nearly £3k though - that is a lot of money. The problem is that I already have two other children with SEN and we often have to spend money on reports for them too. I feel as though I can't justify spending that kind of money on a diagnosis for myself.

[bodenbiscuit]

That is terrible hiddenhome :(

I'm not very impressed with CAMHS either. They apparently feel that my daughter is in the wrong school but they are not allowed to put it in writing.

[hiddenhome2]

CAMHS are legendarily awful, so many people struggle to deal with them

They're not up to date with the latest research and have absolutely no idea of how to deal with an atypical presentation.

Ds saw a psychologist a couple of years ago who was spouting off about 'attachment disorder' oh, yes, the old 'refrigerator mother' bullshit that's been out of date for about 30 years now

Getting referred to a developmental paediatrician is virtually impossible from what I've experienced. CAMHS are a bunch of charlatans, fools and manipulators. They're inexperienced, poorly educated and thick as bricks. I've heard some real corkers coming out of the mouths of these turnips.

The problem with the NHS - and most other govt organisations - is that once you're in a job, as long as you turn up every day, you can continue underperforming and being absolutely shite at your job, but they won't get rid of you. That's how these hospital scandals and deaths occur. Idiots who don't need to prove themselves or be under any real scrutiny (annual appraisals are just a paper exercise for these people). They just whitter through their day drinking coffee, going to meetings and keeping each other in jobs.

We had to suffer the indignity of being 'assessed' by an egotistical ex school nurse, a psychologist who must've started suffering from dementia, a psychopathic social worker and another psychologist who was just out of nappies. Utter fools the lot of them.

[hiddenhome2]

I'm sure you do a good job Polter. It's just that the people we've had to deal with wrecked ds' childhood, put me on medication and dh ended up redundant due to the stress of dealing with it all.

I have no faith in the NHS, and have to go private for my asc assessment as I know they'll fail to accept my difficulties because I've learnt to make eye contact (albeit extremely uncomfortably) and can string a sentence together. These people must read Medicine For Dummies or something

None of us receive any support or anything. No advice, nothing. Ds has a very debilitating and life affecting phobia which I'm coaching him through. He needs to recover before Feb when he goes away on a big trip. If he doesn't recover, he can't go. He's about 20% recovered at the moment.

[Straycatblue]

Hey guys,
Please can we only fill this thread with ways to change our lives for the better, i totally understand that you are having bad times but i wanted a thread with examples of how to make our lives more positive as here is already so much negativity surrounding our diagnosis. Obviously people need to vent and get as much advice as possible and i totally agree with that but could you possibly start your own thread for that? Hopefully no-one is offended by my request as that is not my intent.

Hi Stray! Good to see you still around.

Waves to Allofaflumble, good to see you, i still drop back in from time to time.
bodenbiscuit I went private for my diagnosis.

R.e people with Aspergers becoming nurses, i was told it was a very common profession for women with aspergers to go into but I cant remember the reason why.

[hiddenhome2]

Yeah, I'm sorry for ranting. I won't do it anymore

[bodenbiscuit]

Straycatblue - did you try the NHS first? Sorry I hope you don't mind my asking. Did you go to Lorna Wing? I think the good thing about going private is that you end up with an excellent report. To be fair I've had lots of good experiences with the NHS in other ways.

By the way I totally understand what you're saying but I think problems with getting a diagnosis are never far from the surface for those of us who have a child with ASD. So on threads about dx feelings about that topic may spill out! But I agree - it certainly helps to have threads of positive ideas to move on for ourselves.

[bodenbiscuit]

I have done 2 years of psychotherapy in the past which helped put a stop to my self harming. I had an excellent counsellor and she sadly had to retire to look after her parents but she helped me so much. I'm thinking maybe I should start that again.

[ToadsJustFellFromTheSky]

I was having a bit of a slow moment there . I forgot that not all nurses work in hospital or GP settings.

[ToadsJustFellFromTheSky]

Tbh, having a diagnosis has improved my life in a lot of ways. I'm too tired to go into everything right now but I will say that getting a diagnosis is one of the best things I've ever done. That might sound strange but it's true.

[MrsLogicFromViz]

I have good and bad days - currently facing a huge decision about my future career and I'm sure like many women with ASC, am wondering what lies beyond my job. I like accepting the limitations of my ASC and decline quite a lot of stuff these days, that's not to say that I shut myself away. Well, sometimes I do.

Let's try and be kind to ourselves.

[bodenbiscuit]

I find that as I get older I shut down more.

One thing that does help me is going to the gym. I go to a gym where I feel comfortable and stick to my routine. It really is the main thing that helps my anxiety.

[Straycatblue]

bodenbiscuit
Straycatblue - did you try the NHS first? Sorry I hope you don't mind my asking. Did you go to Lorna Wing? I think the good thing about going private is that you end up with an excellent report. To be fair I've had lots of good experiences with the NHS in other ways. I find that as I get older I shut down more.One thing that does help me is going to the gym. I go to a gym where I feel comfortable and stick to my routine. It really is the main thing that helps my anxiety.

Hey Boden, sorry, took some time out from here so have only just seen this, no I did not go to NHS or Lorna Wing.
Going to the gym has really helped me also.
I mentioned it earlier but the hypnotherapy I have been having seems to be having the greatest positive impact at the moment, also being around animals and not people soothes my mind.