Struggling

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  • Moon
    Moon Member Posts: 28

    Thanks all for your really kind comments, I appreciate each and every one of them.

    Trish, I have tried lavender pillow spray and whilst it smells soothing it did nothing for me sleep wise.

    Stickywicket, you're right about the driving, I can't look over my shoulder or turn my neck very well and have numbness in my left hand so I probably wouldn't have been able to drive even without the eye issues.

    JessicaLizzie, have you started your biologics yet and if so are they helping? It is such a long winded process, it's taken me 15 months to finally get approval to try them. I appreciate some of that time has been taken up chasing funding and lots of discussions between my various consultants to make sure I'm trying one that won't impact on my other health issues but even so it's been a long wait. Hopefully just a few more weeks and I'll get my first batch delivered. I don't feel the need for help within the home, at the moment I'm far to stubborn and pig headed to accept any help currently, my hubby is very houseproud and we muddle along together, what doesn't get done today can wait! Unfortunately neither of my boys live close by but they offer moral support in the way of texts and funny messages and phone calls which makes me happy and that is invaluable. Plus my daughter makes me smile everyday and so I count my blessings when I can as I have a lot of good things in my life. I would be extremely grateful for any help and advice you could offer me where my daughter is concerned. It's my biggest wish to see her as happy and settled (and safe) as my boys are.

  • Trish9556
    Trish9556 Member Posts: 711

    Does your daughter have a social worker? If so they should be able to help you and ultimately her

    Trish xc

  • Moon
    Moon Member Posts: 28

    We have been fighting for one for months as our local authority don't allocate them as a matter of course, they have assessment officers! These people input all the information into a computer who's algorithms then spew out what they decide is the best place which quite frankly is an utter disgrace. We have been offered a room in a shared house with minimal support and no overnight support. This is for a young girl who needs support 24/7 especially overnight as not only does she have Downs she is also deaf. The reasoning for this is because she works for 2 hours a week (fully supported) and the computer equates this as up to 16 hours. It's a joke.

  • Trish9556
    Trish9556 Member Posts: 711

    Can the RNID help? Xx

  • Moon
    Moon Member Posts: 28

    We have had advice from the National Downs Syndrome Association but at the end of the day it's primarily down to us to fight her cause. And I will do my very very best for her but I'm just exhausted with it. It would be bad enough if I was 100% fit and healthy but pain, fatigue, brain fog just makes it so much more difficult to deal with

  • Trish9556
    Trish9556 Member Posts: 711

    I sympathise with you and entirely know what you're going through. My niece was brain damaged due to epileptic seizures at a young age all because the drs refused to believe my sister who had watched me with seizures from aged six months, when she told them my niece was epileptic. She had had immense battles trying to get her into various centres and even had her consultant moved to one in a different hospital. I do hope someone can help you soon. I know how hard it is for you.

    Love n hugs

    Trish xx

  • Loudave123
    Loudave123 Member Posts: 2

    Hi lovelies

    I feel your pain everyday!!! I was very sceptical about seeing a Chiropractor, it's expensive, but I have noticed a huge difference!!

    I am also trying Reiki next week too, fingers crossed.

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