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Fluctuating symptoms - invisible illnesses

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  • janice_in_wonderland
    janice_in_wonderland Community member Posts: 265 Pioneering
    Hi @Victoriad
    It's not always that simple but my way of coping is avoidance so I'm v isolated bc of it
    ...selective sound sensitivity may not be music volume but something reasonably normal such as an audience clapping or wrappers rustling in the cinema or even the pitch of someone's voice and cutlery being wiped and thrown into its sections in a buffet restaurant can all be uncomfortable...repetitive sounds can end up reducing me to tears unless I can remove myself from situations that could be a trigger 

    The volume of cashiers scanning can be annoying so I've started asking if they could turn it down - every item bleep bleep bleep! 

    Gov are currently funding research atm and there's a convention in US so more there is more awareness happening ;-)
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  • janice_in_wonderland
    janice_in_wonderland Community member Posts: 265 Pioneering
    Thank you & hugs back too @Victoriad

  • Becki
    Becki Community member Posts: 1 Listener
    My PIP assessor I think because I was dressed and got there that I had no problems. But what they don't see is how long it took to get up and dressed and how awful the rest of the day will be. It's just a snapshot.
  • susan48
    susan48 Community member Posts: 2,221 Disability Gamechanger
    Victoriad,
    i will see about bus pass, at least I would have it if necessary.
    maybe will see if I can download the forms.
    I have a council office just along from me so can ask someone to hand it in.
    Also thinking it’s proof if I was to go somewhere you get concessions, carer/companion free.
    Highland show for example, was there last year, wasn’t as scary as I thought, open spaces, no need to go to crowded parts.

    Thank you again  :)
  • whistles
    whistles Community member Posts: 1,583 Disability Gamechanger
    The word social made me immediately think of people and places. Not sounds.
    I know people with autism who can't bear certain pitches and sounds, not saying this is you. I'm just showing my lack of knowledge because I haven't looked it up. 

    Sort of bugs me that pip didn't want to know about anyone's llnesses etc. Because they wouldn't know the symptoms that the person is struggling with that stops them from doing the descriptors. Sorry I digress.
    Do not follow me, I don't know where I am going.
  • janice_in_wonderland
    janice_in_wonderland Community member Posts: 265 Pioneering
    Mine is more related to PTSD which inc startled response too and others all invisible unless pain suddenly takes my breath away or anyone is observant enough to notice injuries from my previous physically demanding job and ageing isn't helping the accumulation - MR/Appealing has most def had an impact too 
  • whistles
    whistles Community member Posts: 1,583 Disability Gamechanger
    susan48 said:
    Victoriad,
    i will see about bus pass, at least I would have it if necessary.
    maybe will see if I can download the forms.
    I have a council office just along from me so can ask someone to hand it in.
    Also thinking it’s proof if I was to go somewhere you get concessions, carer/companion free.
    Highland show for example, was there last year, wasn’t as scary as I thought, open spaces, no need to go to crowded parts.

    Thank you again  :)
    Certain crowds are a problem for me. You do learn to look out for the type of crowd that's likely to creep to a problem. Depending on what you are avoiding.
    People having a nice day out, tend out tend to be the ok crowds. Change that to the evening out and forget it.
    Do not follow me, I don't know where I am going.
  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
    Hello @janice_in_wonderland   Pleased to meet you and every body especially all my favourite people.  You know who you are.  Love you all.

    I was born with a disability and have mental issues as well.

    Plus my hearing loss and it is effecting every day.  

    When I was growing up my Mother who never really understood the issues and problems.  Always condescending, patronising woman made it worse for me.  Shouting constantly and telling people that he has problems and in her mind attracting more than should attention.

    Tried unsuccessfully to make every little ounce of my disability look to others I am the problem, acting and the Oscar goes to demeanour.

    Never ever in my life felt so uncomfortable about my problems and issues.  Pointing out to Doctors and medical staff he is OK and in absolute pain, agony with some days.  Secret visits to Doctors and the worse of all.  The interfering busy body medical receptionist.

    We all of us in the community have had those have we not.  Telling Mother of my visits.  Sorted that out told the Doctors.

    All Mother did was put my meds down the toilet flushed them.  Had a big bust up and told her the truth.

    Nothing wrong with you she hollered and I then started to get annoyed and angry.

    She all my life denied my treatment, operations the rest.  Could fill an exercise book.   When I am trying explain illness she had no clue about.  Stigma and the rest.

    Only since leaving that I was right and did the correct thing seeking help and support .

    Remember those days mental illness a stigmatised illness.  Those hospitals I went into did not help.

    Even those days any illness was treated with brutality, harsh and some times blunt views on how you should be dealt with.

    Also going to hospital with any operation I had .  Such as on hands or feet and the attitude of my Mother was enough for me.

    I would go in and first thing I would do upon entering bar her from visits.  So they went away on holiday.  One time had to be left alone to cope.  Went away all of them, was out in three days or four.

    No one home stayed with a friend, who realised the situation.

    Remember being ill in my Mothers house came with a caveat.  You not ill going to work or to where ever.  Understand this you have depression and anxiety.  Really depressed forced out of the house.   Lots of verbal's and end up outside no coat and the rest

    Found myself in work emotional and very much not wanting to be there.  How I got there do not know.  I know I recall did not drive, too much.  They one of the staff took me home.

    To my Mothers chagrin do not want him here he is alright nothing wrong.  You must understand on meds told by Doctors can not work.  The attitude and all the rest.  Calling work colleagues got you fooled .  Thank god for a mate at work who telephoned her and told her the real reason the truth.  Everything.  This made me became probably into a alcoholic.  

    Also found the courage to stand up be me and have the energy to fight for what I need.

    As I grow older have had many times why we should be a community.  Not saying that we have problems and issues.  Try to seek solace and realise that we can be helped.  Given support, ease the problems but not cure.

    Among other reasons I had said before.  This is why I am never ever critical of people with any illness or disability.  Why would I.  Understanding each other is important and we all should honour and respect each others issues and problems.

    Take care
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  • susan48
    susan48 Community member Posts: 2,221 Disability Gamechanger
    Thanks Victoriad,
    whistles, I’m totally there with nights out, not been on one for years, that ended up me in an ambulance, panic attack?

  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    @janice_in_wonderland I have misophonia too! I'm pretty lucky, though, as I only have 2 trigger sounds: barely audible music/radio coming from someone else's headphones, and snoring.

    TheTfirst one is fairly easily avoided: when I'm able to go out I just wear headphones most of the time. Snoring, however, is a bigger issue. I wake up immediately when someone starts snoring, and I'm instantly enraged (the music/radio one makes me feel panicky, not angry). It's really hard to control, and I've smacked or kicked a few people in the past because of it. It happens on the odd occasions when I snore, too, which is kinda funny. ;) I had a cat who snored sometimes, and I had to start locking him out at night, poor thing. 

    I once had to get off of a long distance coachcin the middle of nowhere, Vermont, and wait for the next one because some guy was snoring and I couldn't drown him out. Once, when I was camping in the middle of the Mojave Desert with a few other people, someone started snoring, and eventually I picked up my sleeping bag, walked a quarter of a mile away, and went to sleep there. There was a bit of a panic in the morning when the others woke up to find me gone. ;)

    Unfortunately, I've had partners who snored every night, and I either had to have another room to go and sleep in, or we could just never sleep in the same place, which kinda sucked. 

    I can't share a room with someone I don't know well (I had to sleep in a bathtub in a hotel bathroom once), and when I used to go camping a lot I would sleep in a tent a little way away from my friends, because two of them snored. 

    *shrug* Not the worst thing ever, but rather inconvenient. 
  • janice_in_wonderland
    janice_in_wonderland Community member Posts: 265 Pioneering
    Hi @Waylay
    Thanks for your reply and for sharing your experiences too...
    I wondered who else may also suffer this way so maybe a new discussion is worth starting...

    I tend to manage mine by either mimicking (echolalia) which can actually be really funny at times or I internalise things which isn't funny bc if I can't deal with it I end up really upset rather than angry

    I can't sleep through anyone snoring so relationships of any kind feel like 'space invaders'! I'd have to take a sleeping tablet which isn't the answer bc of sleep apnea which has been known to cause me to cough n choke so I don't know the answers for that apart from separate buildings let alone rooms or as you say much distance when camping which I would only cope with wild camping although getting to n from a suitable pitch alone with heavy bottles of water etc could prove to be a challenge but so worth the escape from pollution inc smells light and noise  

    I will invest in new headphones soon too but I read that getting dependent on them can be both positive and negative, headphones don't have a setting to filter out specific trigger sounds (such as traffic, anything electrical that buzzes, carrier bags and crisp wrappers etc etc which sound loud to me) and allow other more pleasant sounds like birds singing which I love - people have been amazed how I can point to wherever a bird is singing as they could only hear immediate obvious sounds/noise which I find they are suffering the hustle n bustle whilst I appreciate feathery friends so it has its plus side

    Eating out is limited/not happening atm a flare up can last several weeks even months (not just selective sound sensitivity affecting my life) but I'm sure ppl think 'who does she think she is?' simply bc I would rather sit somewhere without the sound of cutlery and crockery chinking and clanking whilst trying to eat or drink; such loud places I regard as anti social - places like The Savoy are perfect! 

    Thank goodness for mobile phones having a volume control and loud speakers bc one particular old school friends voice and behaviour is a trigger so I have to limit contact 

    I'm like a hermit since moving to more suitable accomodation so I hope I connect with others who accept I just need to live a quiet life and limit anything unnatural bc chemical sensitivity makes me feel sickly too - I can't help being hyper sensitive to modern living and need to live off grid but would be too much to survive alone 

    Thank goodness for more public awareness re invisible disabilities 

    TY for reading 
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    Yours sounds worse than mine! It's really only a problem in relationships or while traveling, and I don't travel anymore...

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