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

(48 Posts)
superbugged Mon 21-Nov-16 10:10:47

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?

superbugged Mon 21-Nov-16 10:13:53

Apologies for all the mistakes. I'm also rubbish at looking at a screen for too long!

pennycarbonara Mon 21-Nov-16 10:26:42

Are you making yourself use stuff you don't actually have to because you feel you "should" be "normal"? You could decrease the burden by getting rid of the uncomfortable materials, not going to optional places (eg particular shops, leisure activities) that make you feel awful, and by having less clutter around.

It does sound severe, so maybe you should look for therapists who specialise in these things (sorry, don't know anything about these really) but consider, for instance, the number of people on here who won't wear certain fabrics. It's not that weird. You're allowed to hate these textures and be a bit eccentric.

Can you look at options for working from home so you can control your environment more?

pennycarbonara Mon 21-Nov-16 10:28:39

And are you in a position to move to a quieter area such as somewhere semi-rural?

Fouristhebestnumber Mon 21-Nov-16 10:30:19

Just wanted to let you know that you are not alone! I have a range of sensory issues which got a lot worse after a traumatic event 3 years ago. I hate noise, I have ringing in the ears.. my vision is somewhat distorted, I see a static field where there is none. I hate bright lights and if ds gets given a noisy toy I have to hide it as I honestly cannot deal. It's given me major anxiety and I too find it hard to hold down my job, I work in an office and sometimes the lights and noise and all the people around is intolerable.

The only thinsg I've found that helps are having an understanding dp, he's long suffering bless him, and DISTRACTION I cannot stress that enough, keep your mind occupied. Mindfulness has been suggested to me many times but I've yet to give it a proper go. I think the app is called Headspace.

starchildareyoulistening Mon 21-Nov-16 10:35:26

I know what you mean, it's such a despondent feeling to realise there isn't actually a "cure" - I'm awaiting an assessment to find out if my anxiety and sensory issues are down to autism rather than "just" major depression as previously diagnosed - and although it will be interesting to find out, I am a bit worried that if I am told that I'm autistic I may be crushed by the knowledge that this is just Me and can't be fixed.

There must be some coping techniques that could help... I suppose ear plugs could be an option? I wear sunglasses a lot and will sometimes wear a woolly hat pulled down over my ears which seems to help a little bit. I'm also working on coming to terms with the fact that I may never be able to cope with working full time, as I just get too overwhelmed. I work 3 days a week atm as well as one weekend a month, which is great in terms of having enough days off to decompress and save energy for coping with work, but it also means I can't afford to move out of my parents house!

I hope someone has some better ideas for coping skills, it really is such a difficult thing to come to terms with a life that doesn't match up to the one you'd always imagined for yourself. flowers

superbugged Mon 21-Nov-16 10:35:44

I was very misunderstood as a child and had no allowances made, but to be honest I haven't been able to articulate what stresses me and why until very recently.
And pre kids I could find ways to manage by planning ways around difficult situations and controlling my environment the best that I could.
Now I have kids and a DH (who is extremely extroverted and outgoing) I have to 'suck it up' for fear of ruining their fun and quality of life.
The choice to opt out of things is no longer there so I am struggling with having to just get on with it - shopping, softplay, school run, medical appointments etc.
Also, no one seems to understand or have any tolerance so I feel like I can't speak up. I am labelled purposely difficult.

user1471537877 Mon 21-Nov-16 10:36:28

Hi op

It sounds like you are really struggling with various processing disorders, both sensory and auditory

DD has both severely and I know just how awful they can be, over on special needs you will find many more who can give you practical support

Firstly have you yet got a formal diagnosis so you know what you're dealing with, it will help you obtain health support and financial (pip esa) etc

Read around on the internet about these conditions, there is no magical cure but there are things you can do to help, coloured lenses for visual stress, white noise for the auditory problems etc

There are some supplements that may help, DD has found 5htp dampens her symptoms down

superbugged Mon 21-Nov-16 10:39:21

We live somewhere reasonably quiet and I am not really working much at the moment, a small amount of work at home.
DH is beginning to understand but finds it frustrating.
I have lots of social problems too and am pretty rubbish at communicating with people.
Star yes to the sunglasses, my comfort blanket
Four I can really identify with what you have said, thank you

HeyMacWey Mon 21-Nov-16 10:44:49

I get sensory overload as a result of cfs/me. Look up brain fog and there might be some useful ideas for you.

For me ear plugs are a saviour for being out and about as is avoiding places at times I know are going to be busy.

I agree re: mindfulness/meditation /yoga indra can help to calm the brain and feel properly rested.

One of the tips the occupational therapist gave me re info overload at work /on the computer or reading was to either make the type bigger on the info I was reading or simply cover up paragraphs if I was reading lots of information as our brain scans paperwork as if it's reading ahead so this then limits the amount of information going into the brain and too much competing information. Another tip was of I was driving somewhere or a passenger in a car then to sit for 5 mins once I'd arrived at the destination to allow my brain to recover from the over simulation of the cars/lights/decision making/sensation of travelling.

I'm the same of the are too many people. I can just about manage to follow/hold a conversation if there are two other people in the room - any more and I just start withdrawing from the conversation as my brain doesn't compute.

Might it be worth you going to speak to your gp to see if there is any underlying condition?

Have a chat too perhaps with your hr or occupational health dept about whether any adjustments could be made.

superbugged Mon 21-Nov-16 10:45:50

User my eldest DD is showing signs of tactile problems. Clothing has to have no seams, labels, tight neck. I have to wash it several times before she will wear it. Seems in socks!! I just despair. I try to play it down. But that probably won't help will it?

pennycarbonara Mon 21-Nov-16 10:46:59

Have you been able to talk to your DH about it?
Would he really want you being constantly, secretly miserable?
Presumably you and he got together as an introvert / extrovert pairing, so he must have respect for that side of you and not expect you to be the same as he is.
He must have certain things he really doesn't like, and presumably you respect those, and he assumes others would too.

Shopping: can you do online supermarket shops and get most stuff delivered?

It sounds like some kind of therapy would help generally, with this history of misunderstanding and intolerance. (Of course that's easy to say, not sure if you could budget for that.) Being more aware of, sensitive to and aware of your own needs can help with parenting and other relationships too.

You could also make a list of things you do enjoy doing or which are comfortable, by yourself or with the family, so you remember what you are able to do, and you can maybe do more of those activities. So it isn't all about negatives.

starchildareyoulistening Mon 21-Nov-16 10:47:30

Do you think speaking to a GP and looking into the formal diagnosis route might be helpful? Perhaps you would find it easier to explain why you need certain allowances to be made, and DH might be more inclined to take it seriously, if you could cite a specific condition that he could read up on and learn about. Although ideally he ought to try to be more understanding anyway tbh, it's not like you're being awkward just for shits and giggles.

superbugged Mon 21-Nov-16 10:47:48

Hey some great tips there that I can start using straight way. Thank you so much.

I am considering paying for a private ASD assessment, as I fit the AS profile well. But I don't know what I would do with a diagnosis TBH

MrsJayy Mon 21-Nov-16 10:49:01

You sound like you have a processing disorder and as a child it would have been dismissed which is such a shame, 1 of my adult Dds struggles with the world like you seem to she has learned coping strategies but it is still a struggle,

MrsMozart Mon 21-Nov-16 10:51:03

A very dear friend suffers in a similar way. She's seeing a counsellor, for want of a better word, who also uses some form of hypnotherapy. He's helping her with finding coping mechanisms, which certainly seem to be working. It's not a cure for sure, but she's the happiest Ive ever seen her.

MrsJayy Mon 21-Nov-16 10:51:32

Dd has started to look into mindfulness and meditation which helps her to decompress maybe something you could look into? If you do get a Dx then least there will be some understanding for you iyswim

AnchorDownDeepBreath Mon 21-Nov-16 10:54:14

I think you need to talk to DH again and find a way that you can opt out of these things because they are making you miserable but he and the children carry on. It doesn't need to impact on their lifestyles, really - but forcing yourself through when you're feeling so antsy is going to end in disaster sooner or later.

Look after yourself. You can't help it.

MrsJayy Mon 21-Nov-16 10:56:54

Btw you dont need to suck it up for your family

Cucumber5 Mon 21-Nov-16 11:01:30

All the things you mentioned are ASD linked too. It would be good to have a diagnosis because it will help you and others better understand and cope.

superbugged Mon 21-Nov-16 11:06:18

I have started to show DH a few videos on YouTube that simulate sensory meltdowns. But of course it's never exactly the same for everyone but it's a start to him understanding he is getting there. He does try to support me.
He says that the DD's are copying me saying they don't like noise.
I don't want that. But they might genuinely have a problem too, I won't know until they are older.
It's bothering me more now as Christmas approaches. I dread it as it's just all too much for me and I will have to hug people and go and stay with family on top of it all.
I think I may be making the problem worse by trying to hide it and get on with things. If I don't make allowances for myself, why would anybody else?
I need to find a way to accept it and explain. So maybe that is the purpose a Dx would serve.
I know I should do online shopping but I find it very difficult to imagine what we might eat and how much so I usually do it daily.
But I will do a shop online today and I will learn as I go! That will make a big difference.
I did go to my GP for a refferal but I haven't heard anything so I am considering going private

Cucumber5 Mon 21-Nov-16 11:09:33

A diagnosis would help you zoom in on strategies and understand yourself

Cucumber5 Mon 21-Nov-16 11:11:48

A diagnosis would also mean you can say 'no I'm not going to x because it's a difficult experience due to the ASD' . It means that you're not being difficult, it's just a factor of the ASD

BertPuttocks Mon 21-Nov-16 11:13:30

My boys have a range of sensory issues as part of their autism.

Anything that can muffle sound is a big help. In this cold weather you can wear ear muffs outside to help dampen down some of the sounds. Particularly useful at this time of year when every shop seems to have loud Christmas music playing.

Sunglasses or even ones with a slight tint can make a difference to the amount of light you have to tolerate. You may have found that fluorescent lights and some computer screens seem to 'flicker' for you, so you might need the glasses for those too.

At home, wherever possible use light bulbs that are a little dimmer than your usual ones. At night time small lamps are less painful than big overhead ones. If you have to switch on a big light, give yourself a moment or two to adjust to the sudden brightness. I always have to cover my eyes with my hand first, switch the light on and then slowly take my hand away.

Our screens are usually on a dimmer setting too, which makes using them a lot less painful.

Wherever possible, try to have an escape plan when you go out somewhere. You need to be able to have at least a few minutes to help the overload to subside. It could be anything from being able to go and stand outside the shopping centre for a a few minutes, walking around the corner away from people, or even just sitting in the car for a little while.

If your children are of an age where they like to go to the park, avoid the busy times whenever possible. Go first thing in the morning rather than at lunchtime. I also used to take mine when it was wet or rainy. Not only did we avoid noise and other people, but there was little chance of any bright sunshine.

Cucumber5 Mon 21-Nov-16 11:13:33

Can you ring your Gp and ask what's happening.

If you have ASD, there is a chance your kids might also as its genetic

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