Welcomes and introductions
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Hi my name is Katie

Katie11Katie11 Member Posts: 3 Listener
Hi, 
As my title say, my name is Katie. I joined the Scope community last week and have not yet posted anything.  I am new at posting on websites and accessing support this way, so I am a bit nervous.  I am a mum of three children. My youngest is in year 1, middle is in year 5 and has ASD, ADHD, learning difficulties and an A typical way of thinking and my eldest is at high school in year 7 and is Dyslexic. In my house we try to accept our difficulties and celebrate the differences and imbrace them for what they are.  I have lived with Fibromyalgia for over 9 years but over the last three years my health has taken a turn for the worst and in August I was diagnosed as have ME/CFS with Fibromyalgia. I am one of these people that just keep going, I try to do everything for gear of letting people down or being judged. Two/three month ago, it hit me - if I carry on the way I am going my body is going to give up on me and I need to start listening to it. I had an appointment via telephone with the ME/CFS clinic which left me feeling positive about my stratigies and asking for support from others.  I went into work after recieving the letter from the clinic to hnd to my boss and we had a nice chat. Two weeks later I was really struggling and plucked up the courage to ask for support only to be told that this is the nature of the job and did I have someone at home that could support me emotionally. I have applied for PIP and awaiting a decision, I have been turned down for blue badge and appealed the decision and lost.  I have now written to the again following a conversation and awwaiting decision.  I even pluck up the courage to ask social care for a 'Parent Carer Needs Assessment' only to find out that it was a tick box/signposting exercise and I was signposted to the people that recommended the assessment (the irony was not lost on me ha ha).  I am starting to feel that 'early help' is a myth and that you can only really get people to listen to you if you are in 'crisis' .  I am tired of having to fight for support but I am at the point that I will keep fighting because people carers and people with disabilities should not need to go beyond breaking point in to a crisis to access the support that could prevent them getting to crisis point.

Sorry for the long post. I didn't really know what to write and it always help to write it down, I just usually write it on word and say it for no one to see.

Katie

Replies

  • janer1967janer1967 Member Posts: 11,205 Disability Gamechanger
    Hi @Katie11 and welcome glad you have joined and posted 

    I tend to agree with your point about support it seems like a losing battle sometimes but your positive attitude will get you there 

    We are here to support you anyway we can 
  • GingerNinja2020GingerNinja2020 Member Posts: 23 Connected
    Hello Katie 
    How are you today?
    Hope we can be friends?
    Just read your post and I love that you are going to keep on fighting
    you should never give up!
    Hope you enjoy your week 😊
  • OxonladyOxonlady Member Posts: 412 Pioneering
    Hi @Katie11, I am sorry to hear about your situation.
    I also have ME and Fibromyalgia, as well as spinal and adrenal problems.
    You might like to contact the ME Association or Action for ME, I believe they both have Helplines and could offer you useful advice and support. They may also be able to help you with regards to claiming benefits. 
    Depending on where you live, there may be also local charities or community groups that could help you. 

    Wishing you and your family all the best. Take care. 
  • Cher_ScopeCher_Scope Posts: 4,088

    Scope community team

    edited October 2020
    @Katie11 Hello and welcome to our community.  I appreciate it can be daunting to share your story with others, but I'm so glad you did so we can offer help and support.

    Good luck with the outcome of your PIP claim.  If you have any questions about the process or receive a letter saying you haven't qualified for support, please make sure to visit our PIP, DLA and AA board to speak to our benefit savvy members.  They are really good at offering advice and can help you get what you deserve.

    As for your job, I'm sorry your employers were unhelpful.  Do you think they could make any reasonable adjustments to help you carry out your role easier?  They have a legal responsibility to do so, so please don't let them fob you off.  Again, our employment board is a good spot for any specific questions you might have.  

    Lastly, we are all here for you with anything that is troubling you.  Even if you need a bit of company or to discuss your fibromyalgia or your children's health conditions.  There is no judgement whatsoever and many of us have lived experience and understand your frustrations  <3. I hope it gets easier soon.  
    Online Community Co-ordinator

    Want to tell us about your experience on the online community?  Talk to our chatbot and let us know.
  • Ross_ScopeRoss_Scope Posts: 4,240

    Scope community team

    Welcome to the community @Katie11 and thank you for being so open, it can't be easy to do. The community will try to support and help you as best as it can, you've come to the right place.
    Online Community Coordinator

    Talk to our chatbot and give us feedback on the community.
  • chiariedschiarieds Community Co-Production Group Posts: 9,252 Disability Gamechanger
    Hi @Katie11 - & welcome to this friendly & supportive community from me too, Katie. I'm so pleased you've joined, as, putting our collective heads together, we may be able to help.
    It's great the way you say you celebrate the differences in your family, embracing them, & your children are very fortunate to have you as their Mum.
    About your problems at work, your employer should make 'Reasonable adjustments' for you, which could include flexible working times; reducing your hours, or being able to continue working, but in a different role. Scope has some info on that. Please see: https://www.scope.org.uk/advice-and-support/work-careers/reasonable-adjustments/
    If your employer remains unhelpful, ACAS: https://www.acas.org.uk/  and EASS (Equality Advisory and Support Service) may be helpful.
    I'm sure you know as a fibro sufferer (not to mention M.E.), that you need to pace yourself to be able to function the best that you can......something I imagine is nigh on impossible juggling work, & having 3 children. As you say, it comes to the point you have to listen to your body, &, importantly look after you too.
    As far as PIP goes, if needed, members can help you along the way. Please don't apologise for a long post; it's way harder to help if people say too little!
    Please chat here any time; we're all here for you, & do please keep letting us know how you're getting on. If things suggested don't help, just let us know. :)




  • Tori_ScopeTori_Scope Posts: 5,039

    Scope community team

    Welcome to the community @Katie11 :) I just wanted to echo what the others have said, and say that I'm really pleased you've found us and felt able to open up about what's going on.

    How are you getting on today? 
    Online Community Coordinator, she/her

    Want to give us feedback? Complete our feedback form now.
  • Masuma12345678Masuma12345678 Posts: 50 Member
    How are you Katie 
  • Masuma12345678Masuma12345678 Posts: 50 Member
    My name is Masuma
Sign in or join us to comment.