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Who has a invisible illness and how do you get through the day?

Tammyjane33Tammyjane33 Member, Community champion Posts: 565 Pioneering
Any tips would be appreciated? 

Replies

  • woodbinewoodbine Member Posts: 1,394 Disability Gamechanger
    Hi I have severe epilepsy which is about as invisible as it gets until i'm on the floor ,biting my tounge and everything else that goes with it, I have a grand mal seizure 2or 3 times a week which take a good day to recover from, I get through the day as best I can, doing what I can when I'm able and not worrying too much about what I can't do when I can't, just to compound things I have absences 4 or 5 times most days, been like this now for 22 years in a few days time. I suppose I have accepted now thats how it is, but my condition doesn't define me, I am still me  the same person I always was.

    Tip? stay positive and smile x
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,604 Scope community team
    Hi @Tammyjane33, how are you doing today?

    For me, pacing can be really important. I try and break the day into tasks and factor n rest when need be. Also, I have a badge which asks for a seat while on public transport. I found this is a subtle way to get a seat and has worked really well.
    Community Partner
    Scope

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  • deb74deb74 Member Posts: 629 Pioneering
    All of my disabilities are invisible! I just do what I can and take things one day at a time. I have learned to accept my limitations and not to push myself too much.
  • Parkrun100Parkrun100 Member Posts: 16 Listener
    I suppose you could call my disability invisible as you can't see it, I had epilepsy as a child, (peti Mals)  this has stopped at the moment, but have co-ordination issues, am slow at doing things, (every day tasks) etc. and am always told am not quick enough. hurry up etc. this has mainly happened in the work environment. have been rejected so much when applying for jobs, that it has worn down my self esteem, and confidence is low, get anxious at thought of job interviews, I go into panic mode etc. feel embarrassed as not had many paid jobs, and been looking for a long time, was registered as disabled when I left school but the place I went closed due to funding cuts, and have been left a bit in limbo. do voluntary work and go to gym which does help, thanks for listening and Breathe.  
  • dolfrogdolfrog Member Posts: 427 Pioneering
    Hi @Tammyjane33
    I have the temporal type of Auditory Processing Disorder, which is a listening disabiliy, the brain not being able to process what the ears hear.
    I have problems processing the gaps between sounds which can include the gaps between words in rapid speech, this is also the underlying cause of my dyslexia. other problems are poor auditory memory which can cause word recall problems, problems following and remembering multiple verbal instructions, not being able to follow long conversations, etc the list goes on lol.
    Currently due to the lack of understanding by others regarding my communication disability i am almost house bound as i try to avoid the ignorance of others and the lack of understanding of the person i really am. Which is currently why I avoid meeting those i do not know. 
  • OverlyAnxiousOverlyAnxious Member Posts: 770 Pioneering
    I just break each day into smaller chunks (one task at a time, one hour at a time, one panic/IBS attack at a time) and tell myself I can die in my sleep if I can just get to the end of the day...  Sadly it hasn't happened so far but it's the only thing I remain optimistic about!

    Nights are even worse than days though, again I just break it up, max 2 hours at a time as that's how long the radio timer lasts.  Eventually it gets through to morning and the day cycle starts again.


  • Tammyjane33Tammyjane33 Member, Community champion Posts: 565 Pioneering
    @OverlyAnxious I'm so sorry you are feeling this way.
    I can relate to how ibs can make you feel and I'm sorry you are struggling at night, I tend to struggle at night too. 
    Have you spoken to a professional about how you are feeling /pain. If you need someone to talk to feel free to message me. Please don't hesitate. There are lots of people here to talk to. 
    Take care. 


  • OverlyAnxiousOverlyAnxious Member Posts: 770 Pioneering
    Thanks @Tammyjane33

    I posted that 6 months ago although I do still use the same technique to get through the day.  Nights haven't been quite so bad recently so that's a positive, but the days have got more difficult, particularly around food, meal times and going out anywhere.  

    I was in email contact with a couple of Professionals recently after years of no help at all, but sadly that contact has also dried up.  The combination of problems that I have means the treatment of one issue is always stopped by another issue.  We've been trying to find a way to break that cycle but not found anything suitable so far.

    I don't really benefit from talking about my problems but I know lots of people do so thanks for the offer.  :)
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