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Feeling like a burden

Juliezoom4Juliezoom4 Posts: 1Member Listener
edited June 2017 in Disabled people
Hi. New to this group. I'm 52 and suffer with Fibromyalgia, CFS, osteoarthritis, bowel problems including. IBS, Tinnitus, few others I can't remember names of. I'm disabled with it all now. I've had it over 25yrs. To begin with I coped. But 4yrs ago it hit me so bad. I started going through the menopause and that's when my condition deteriorated. Last year I left my husband, who I loved, so he could carry on with life. He has met someone who sounds nice. I'm happy for him. I had lovely long curly hair and was size 14. I had to give up work and going to gym. Now I have to have my hair shaved as it hurts too much to brush it. I'm now size 22. I have put on 6stone. I have more bad days than ever. No good days. In pain 24/7.
The last flare 5days ago I realised that I would have to end it when my life gets really  unbearable. I don't want my family to have me as a burden. I will go to Switzerland. Hopefully that's a long way off. Does anyone else get bad flares and if so, does anyone know what best helps the pain. Thanks ☺️ x

Replies

  • Sam_ScopeSam_Scope Posts: 7,477Administrator Scope community team
    edited June 2017
    Hi @Juliezoom4 welcome to the community, I am so sorry to hear what a struggle things are for you, it sounds really tough.

    I have a chronic illness and I do understand just how tough it can be and how down it can make you, I think that guilt and feeling like a burden are really difficult feelings. 

    One thing a friend said to me a few years ago that has always struck me is not to make decisions on a bad day.  When you are deep in a flare up, it is hard to feel anything positive and easy to feel completely defeated. And so I never make big decisions or even think about them on a bad day, I always wait for a good day (or even a good hour!) 

    You are not a burden, you are a wonderful and unique human who has an impairment but that doesnt mean that your life isnt worth living.

    There are a few things I would like to pass on, firstly, how are you financially? Are you receiving all the financial help you should get? We have a benefits calculator here so you can see if you are receiving everything you are entitled to.  If you need further benefits help, then let us know as we have a ton of great resources.

    Secondly, are you seeing anyone regarding your mental health? Feelings of depression, anxiety and thoughts of suicide do unfortunately sometimes come along with long term illness, there is help out there.  Please do access it and ask for help.  Your GP is a great first port of call.

    If you are having thoughts of suicide, it is important that you discuss them with someone who is qualified to help. Please call the Samaritans on 116 123 (free) or email them at [email protected]

    You might also benefit from reading MIND’s information on how you can help yourself. If you feel that you may be an immediate danger to yourself, please call 999 or go to your local hospital right away.

    Thirdly, do you have any support in the form of friends and family? Can you speak to them about how you are feeling? When we are in pain, we sometimes isolate ourselves and I know it takes a lot to reach out for help, but it does help to have people around you.

    You are obviously in a really tough place right now, but speaking out is such an amazing first step and I am so glad you are here. This community is a safe place to talk about disability and how it affects us, we have so many great members with such vast experience and I hope we can chat with you and help in some way.

    Stay strong  :)


    Scope
    Senior online community officer
  • Sam_ScopeSam_Scope Posts: 7,477Administrator Scope community team
    Regarding dealing with pain, are you seeing anyone from a pain clinic? There are around 300 pain clinics in the UK. Most are in hospitals and have teams of staff from different medical areas, including occupational therapists, psychologists, doctors, nurses and physiotherapists. They all work together to help people with pain. 

    They can help support you in your impairment and have things like Pain management programmes, which are a series of sessions aimed at teaching you how to live with your pain. Instead of treating your pain, you learn to cope with it and, research shows, can expect to enjoy a better quality of life, sleep and mobility afterwards.

    Pain clinics vary but usually offer a variety of treatments aimed at relieving long term pain, such as painkilling drugs; injections; hypnotherapy and acupuncture.

    You can ask for a referral through your GP.
    Scope
    Senior online community officer
  • steve51steve51 Posts: 5,776Community champion Disability Gamechanger
    edited August 2017
    Hi @Juliezoom4.

    A very very big welcome to you & I do hope that we can help /support you????

    "Blimey" you are the female version off me !!!!

    Mind you I don't want to be a better version "2 be honest"

    Following my Stroke I had to have major bladder surgery so I now catheterise through my "belly button"

    I'm not looking at "Switzerland" as an option.

    Life is too short anyway!!!!

    Here's my help:

    1. "Distraction" do you have pain now whistle you are here ????
    2. "Hobby/Interest" giving your brain too much to think about 
    3. "Work Out" the "Triggers" of your "Pain" & try to reduce them.
    This on helps me greatly.
    4. "Movement" try to do this very slowly & build it up in stages.
    By laying in bed your only adding to the pain as your bones stiffen & your mussels waist away
    5"Socialise" meet & your neighbors & family outside in the "fresh air"
    Please please let me know if I can help you further !!!!

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