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Hi, my name is silver71!

silver71silver71 Member Posts: 3 Listener
Hi..new to all of this so please bear with me! I am a single mum of 2 with fibromyalgia.  My son is 19 and at college and my daughter is 9 and has a physical disability which results in her needing a wheelchair. I have very little support and so often find things a challenge. 

Replies

  • janer1967janer1967 Member Posts: 11,200 Disability Gamechanger
    Hi and welcome to the community and telling us about yourself 

    Feel free to join in or ask any questions 

    Have you looked into getting any care support 

    Maybe refer yourself for care needs assessment on gov website 

    Look forward to seeing you around 
  • chiariedschiarieds Community Co-Production Group Posts: 9,160 Disability Gamechanger
    Hi @silver71 - Firstly, welcome to the community. It's good to have you here. I'm sorry to read you feel you have little support. May I ask is your GP giving you & your family any support? Are they understanding about your fibromyalgia?....it's often not the case. Understandably things are a challenge; is there anything in particular you need help with? If you could say a little more perhaps Scope, or one of our members may be able to point you in the right direction. This is a great community, so please let us know if we can support you in any way. :)
  • silver71silver71 Member Posts: 3 Listener
    Thank you both...my gp was amazing however just before the world stopped my surgery merged with about 10 others across the city to form a super practice which has resulted in me never seeing the same gp more than once..I say seeing though it is all done over the phone...if you can get an appointment after ringing from 8am..its so frustrating. I feel like no one really understands my fibromyalgia...not completely sure I do if I'm honest. I've been diagnosed since 2012 though I was having lots of tests etc for about 3 years prior to this.
    My mood fluctuates so much but I think that because my little girl has her own difficulties I am her advocate and I just carry on only collapsing into a heap when she is in bed or school. I haven't told many people as I still feel there is a bit of a stigma about fibromyalgia.I don't think I'm entitled or need a care package it just takes me longer to do anything and I'm exhausted after every task. I used to love walking but don't do that much now as I also have chronic pain. I do have an OT coming to my home tomorrow to do an assessment so any tips on what help is available or has been beneficial for people would be greatly appreciated
  • chiariedschiarieds Community Co-Production Group Posts: 9,160 Disability Gamechanger
    Hi again @silver71 - I'm sorry, I've had great GPs & always had the opportunity to see the same one....even when they didn't know what I had, they were willing to refer me to various consultants. I do have quite a good understanding of fibromyalgia as I looked into it over 20 years ago (& still do), as many with my associated problem (Chiari 1 Malformation, a neurological disorder) were often mis-diagnosed with this. I feel USA Drs have had a way better understanding of this, whilst here in the UK, fibro can be seen as a waste basket diagnosis when our Drs don't understand this (which is where a wrongly perceived stigma can occur, tho fibro is very real.)
    I also identify perhaps a little with how fibro must make you feel, as those with my genetic disorder (the hypermobile type of Ehlers-Danlos Syndrome) are said to suffer pain most likened to fibro. The collapsing into a heap I used to do pushing myself through everything that needed to be done when my children were younger, & still suffer exhaustion after doing the most basic tasks today....it's either vacuum, hang the washing out, or try a little cooking, etc. & the exhaustion is debilitating. Yes, I can do most things, but it takes me way longer too.
    Please don't feel you aren't entitled to anything, &, if you need help, which it seems likely you do, identify what you need, & by saying what you need, you are also going to help your little girl. Discuss what help you need to help both you & your daughter with the OT. My best wishes.
  • silver71silver71 Member Posts: 3 Listener
    Thank you so much for your kind words. You have absolutely hit the nail on the head! Particularly with the "it's either vacuum, hang the washing out, or try a little cooking, etc. & the exhaustion is debilitating" . 
    I too had years of tests and referals to various consultants and felt like not only was I wasting their time when everything came back as normal but that I must be imagining things or that I was a hyperondriac (?) I have other issues like hypermobility, ibs, depression, pain, fatigue etc. I know a little about EDS as the condition my daughter has is sometimes related to it.
    I'd also like to say thank you again as I certainly don't feel so alone now. Not that I wish illness, pain or difficulties on anyone but it is a comfort to know there are others who have the same experiences as myself and maybe by sharing them we can make life a little easier for each other. Thank you!
  • chiariedschiarieds Community Co-Production Group Posts: 9,160 Disability Gamechanger
    You're very welcome @silver71 - it's good to talk, as the saying goes. :) Let us know how you get on with the OT.
  • Cher_ScopeCher_Scope Posts: 4,038

    Scope community team

    Hello @silver71 and good luck for today's OT assessment.  You definitely are entitled to support for your impairment needs so don't be afraid to be honest about what difficulties you're experiencing.

    I'm so pleased to see that the replies from our members have helped, and you are always more than welcome to come and join us for a virtual natter, rant or vent.  We understand how it feels and you aren't alone  <3  

    Please keep us updated with how it goes and take care. 
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