To think that my sensory issues will never get any better?

[superbugged]

I am in my early thirties and I have always struggled with uncomfortable clothing, bright lights, too much visual information, noise and sounds drive my crazy to the point where I lose my balance and other senses and fell like I am fall to fall to the floor if I am in a shopping centre or more there is more than one source of noise or people are trying to talk to me at the same time.
Daily life is intolerable, especially now I have 2 young children.
I have found it very hard to keep a job as a result.
My brain is always frazzled, I am tearful, stressed, exhausted and impatient.
I'm jumpy and on edge.
Until recently I thought this was normal and how everybody experienced the world or that I had hearing or sight problems - have had both tested and are fine.
I now now it's not normal and can't be fixed so to speak and it's a sensory problem.
I feel devastated as I always hoped it would be curable or made easier.
Have any adults ever found a way to improve and make everyday life less of a living hell?

Dont play your dds issues down get her to the gp, dh has the same as Dd he learnt so much about himself through Dd he is also undiagnosed but they have the same thing.

He says that the DD's are copying me saying they don't like noise.

It's very well known these things run in families. And if they don't like noise, that probably means there are more activities that are compatible for you and them. Why would it matter if they were copying you anyway? Kids do these things for a while and then change to be more themselves.

I find it very difficult to imagine what we might eat and how much so I usually do it daily.
Can you remember what you ate over the last week or so? That could be a useful starting point, and help you notice what items go together. Also planning meals will probably mean less overload because decisions have been made in advance.

Christmas: You need to learn to set some boundaries and brave the embarrassment that can go with starting to do that. "It's lovely to see you, but I prefer not to do hugs, thanks." Things like that. Older relatives with possible undiagnosed ASD can have very set ideas of how things should be done, either because that's what they are comfortable with, or because they rigidly trained themselves according to social rules of their youth and expect others to follow them too, so you need to be prepared to be firm with them about your own needs.

What age is your Dds? If they are old enough to articulate they dislike noise they are old enough to see a Gp

I've definitely found a diagnosis helpful - it's a label, that makes it easy to say what your limitations are and blames the condition rather than just seeming awkward.

Also once you have that label it's easier to find people with the same/similar issues and get tips from them about how to manage things.

Penny he thinks I am passing on negativity.
They are nearly 4 and nearly 7 the eldest says she struggles more with noise and only eats plain foods but lucky does like fruit and raw veg and salad. Her ideal dinner would be crackers, pasta and a carrot. No flexibility. Writing that down made me realise I should not ignore this. Bless her.
Youngest is extrovert and eats what an adult would.
I will try keeping a note this week of what we have all eaten as a starting point.

Christmas- both families are very tactile and close and I really do like them but I feel violated when hugged and the anxiety of knowing I have to do it is awful. I lurk hiding behind people trying to get away with it.
I will make an announcement that hugs are off limit this year.
I am very affectionate with DH and the DD's non stop hugs and kissing. But i can't extend it beyond that.

Can you ask your GP to refer you to an Occupational Therapist? They're brilliant in suggesting ideas to help cope with SPD in everyday life.

I know the OTs at my local cottage hospital take self referrals. So maybe see if there's any near you?

As for the ASD diagnosis, would it make a difference if you knew? You already know you have traits (at the very least).

Dd7 will say to dd4 'stop that I hate noise!' When they she is winding her up and I don't know if the noise is truly stressing her or she is just wound up because that is what her sister is trying to do or directly quoting me as she knows I am always saying similar things.

I'm not as bad as you OP - but crowds and loud noises and some situations are difficult to deal with. I think I'm luckier in that my children are similar - which can make it easier to avoid or explain to DH.

The children ability to cope has improved with age - but echoy halls were an issue and took one a long time to cope with classroom noise.

I can find the children overwhelming at times even at home - I tend to duck out pop to loo and deep breath or go to room by myself and read for a bit or just close my eyes and step mentally away or make a drink - something else to focus on while I take a mental break. I'll duck out of situations - sit down go round the corner insists we take a break.

I don't have the issue with lights though so it could well be easier for me to cope - it's all noise and possibly mild claustrophobia. It worse when I'm tired - and overwhelming situations can tired me out very quickly. As children have gotten older sometime they ask if we can move away from noise crowd - just as I'm think I'll have to.

We have less issue with clothing - cotton rich large enough socks seem to be tolerated - one as issue with eczema so hates labels - so excema friendly clothing helps there - as does removing labels. No of us tolerate wool - so it's just part of selecting clothes.

We online shop a fair bit - avoid busy places near Christmas - but sometimes you can't avoid situations.

Would having head phone help - either control what you hear or noise cancelling ones - have them with you to sit down and put on and take a break form a situation - I've wondered this as I've had really bad experiences on packed noisy trains where kids are also getting upset.

Unless there was a treatable undying condition causing the problems I think as your an adult it's going to be here to stay so it's all about management strategies. A diagnosis would probably help others understand and be more sympathetic.

Superbugged have you heard of Irlens It might be worth having a read about it as it isn't well known off. Diagnosis and coloured lens have been a help for Ds and Dd.

For my children nursery staff and teachers piked up older ones had issues with noise levels.

Eldest demonstrated preference for particular clothe sand fabrics from very young age - had to be careful other child due to eczema.

So it's been obvious it's come from them not imposed or picked up from me.

So have other adults - teachers ect mentioned your DD having issues in other settings?

Dd has irlens wasnt dignosed till she was 15 was such a struggle we didnt know what was going on We had been back and forward to optitions for years it was eventually an optition who suggested it and started the refereral process . Poor kid had been suffering for years

I think this would be more approachable broken down.

Food shopping every day would send me scatty and I don't have any sensory issues, definitely do an online shop for this week. That will help!

Talk to your DH and make an agreement that this week you will focus on avoiding any triggers, and then try not to say anything you're worried your kids may be repeating. If stopping hearing you say it stops them saying it, they are likely just coping you - but there's a real chance that it's passed on to them so they may carry on and you'll need to then work out what works for them. You'll need a good few days or potentially weeks where they don't hear you saying it so that they "forget" if it's copying though - could you text DH if you're struggling instead?

Then I'd see about getting a diagnosis and look at other areas of life that cause unnecessary stress. Definitely let people know in advance that you don't want to be hugged this year. Most people would be mortified to be hugging someone who didn't want a hug!

I work with a lovely lady who has some sensory issues and she's come on leaps and bounds since she told us and stopped pretending she was fine. She's honestly like a different person.

Have a read round autism resources online. We don't know if DS has autism or not, but either way they are a good source of ideas. Weighted blankets? Soft "nest" to escape to?

ahh lovely, sounds like you have sensory processing disorder. quite badly too.

this is a real thing. you are not making it up and your husband is horrible for disbelieving you.

can you see your gp and discuss it.

strategies I use with ds.

quiet. (he hates me singing and abba brings on a spectacular meltdown. )
manging the home environment. (ticking clocs etc)
limiting the number of busy places we go.
he copes better when he is well fed, at the right temperature.
sunglasses.
ear defenders. (try ear plugs)
understanding from family. (yours were shit by the sound of it)

as for hugs, practise saying no thankyou, I don't like it.

I have just watched the irlen video.
Everyday life must be incredibly difficult. Your poor Dd mrsjay.
I do get the halo and bright light between words and letters but it's not just reading it's everything I look at.

Good advice anchor I will have to try very hard to say something else when I get in a bit of a state. I will be really careful. I might even try saying that I have decided to like noise now. And see where she goes with that

I need to find positive comforts. I find myself pulling my hair and hitting myself in the head. Not to hurt myself. I don't know I'm doing it.
I have had a look online and the wellbeing team is the only self refferal thing I could do. We do have a local Aspergers charity. I could give them a call.
There is a lot of nhs resources for child ASD/spd that I can find locally but nothing for adult. I must be looking in the wrong places.

She was misdiagnosed with dyspraxic traits in primary they have similar symptoms she does much better now she has tinted lenses its amazing the difference they make . Op go to the Drs.

Do call the local autism charity OP - they will be happy to talk to you and suggest strategies which will help. If your DP could go with you it should help him understand where you are coming from with this, that you aren't exaggerating and the ways he could help.

There are no NHS resources for adults with ASD/SPD as far as I know. (I could be wrong though) You are expected to get on with it. Please make GP appointment for yourself, and consider the possibilities for DD that you have concerns about.

A lot of the issues you have commented on, like your social problems and communication struggles sound typical of ASD and can be so debilitating - even doing the school run and making small talk is tiring and creates anxiety; it's like having to put on a stage performance and remember what you should be saying, and knowing that afterwards you will be doing an internal post mortem on your performance: "Did I sound OK? Did I annoy that mum? She blanked me didn't she? Other mum gave me a funny look - what did I say wrong this time? I forgot to ask that mum how so-and-so was doing - it looks like I don't care..." ad infinitum. It's so difficult, and it ought not to be, it's just chat!

You're not alone superbug. No need to blame yourself, nobody sensible would choose this for themselves.

That almost made me cry noodles, you are so right and it is not a choice anybody would make.
the school run examples are spot on and it chips away at you.
It's time to sort myself out. I will give them a call.
I haven't felt able to contact them before because I don't have a Dx and feel like a bit of a fraud or attention seeker.

So not an attention seeker you are struggiling

Hey OP, be kind to yourself. You need a bit of support, and a diagnosis may help you to know what to ask for.

Dyspraxia and scotopic sensitivity (Irlen Syndrome) are the first two things which spring to mind. More commonly known now, would have been less well understood when you were a lass.

Head to the GP, write down the signs you are concerned about and ask for an assessment. Apparently you may be referred to a physio (NHS Direct) .

OP, i'm 36 and i always felt abnormal, nobody else seemed to experience the same stuff or feel/be affected by it to the same degree.

With no knowledge, understanding or support i just had to 'manage'. I feel like all i've done my whole life is tread water just to stay afloat, every day is a mission.
Being told 'depressed?! but you're always smiling!'
I can't be feeling anxiety as i'm 'bubbly and outgoing'....doesn't feel like that inside.

I didn't even know i had chronic depression until i was 32, have had it since i was a child i think. Extremely low self esteem and confidence all my life.

I read up on dysthymia, asd etc but gp's didn't take me seriously.
My new gp, he's put me anti depressants to help 'calm my mind down' because it never shuts up when i'm awake. Things just go round and round like a washing machine stuck on a spin cycle.

I told gp that i wanted to speak to someone about it who can help me figure out what is 'nature' and what is 'nurture'. (I had a very shitty childhood).
He referred me to the mental health services, after a telephone chat they have referred me to a psychiatrist.

I just want to understand ME. If having it officially diagnosed will help me access the kind of support i need then great.
If it helps protect me from the sly games people play when they realise i'm 'neuro-untypical' even better.

Having the 'label' doesn't bother me as i won't be disclosing it unless i want to.