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Fibromyalgia and struggling

CazleepCazleep Posts: 11Member Whisperer
edited May 2018 in Invisible impairments
I suffer from severe me, Fibromyalgia, Chronic back pain. I am housebound.
I have four beautiful girls and a precious granddaughter. My partner still lives with me but we are no longer a couple. 
I am finding it hard to cope with the impact illness has had on my life as good days are pretty non - existant. I am not sure what joining a group will do but I need something although I can't concentrate for long and I am out of it either in pain exhausted or both so may take a while to respond.
I now don't bother going to the GP or hospital as I miss appointments and the pay back isn't worth it as nothing changes anyway or everything is blamed on Me.
Basically I am giving up, have had enough I can't fight this anymore and I am scared, I am holding on by thinking of the kids but as they get older I just make them feel angry and I understand but it's hard, I know they love me but I make them feel guilty. Its just, apart from existing, I have nothing to offer. 

Replies

  • thespicemanthespiceman Posts: 3,194Member, Community champion Brian Blessed
    Hello @Cazleep Pleased to meet you.

    Sorry what you are experiencing and going through.  I understand as so does the community

    Glad you joined. Please can I suggest look at the threads and posts on specific conditions.

    Also practical support and conditions.

    Hope that they can help.

    Please ask the team or anyone from the community for help and support.

    Take care

    @thespiceman


  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Hello @Cazleep and a very warm welcomed to the community. I am glad you have found us, but sorry I have not been able to respond sooner.
    Please take note of my tag @JennysDad. If you quote it as it is here in any post you make I can be pretty certain to see it and you can be sure that I will respond as quickly as possible.
    'Giving up' is, I think, everybody's right, and I have been very, very close myself, though for different reasons. However, I don't think you are going to do that. You have children and a grandchild that you love, and it is for these, in the end, for whom we go on. I suspect that you're actually a very brave person, though you will almost certainly deny it, and I wish there was a magic wand that I could wave to make things better.
    You see, I, complete stranger,  read your post in a matter of seconds and yet you already matter to me.
    @thespiceman is correct in that there are forums/threads here where you will meet people who are in a similar situation to your own, stories that will show you are not alone by people who can relate directly to what you are going through. I'm going to recommend the 'Dealing with chronic pain' thread. You can use the links lower down the screen to look at any forum you might choose to, and you can use the search box at the top of this page to find resources and discussions about matters of particular interest to you.
    That said, how can I help? Can you tell me what it is that makes your children angry? And why should they/do they feel guilty? You and they are victims of good old Mother Nature - She who, if she was a mother, would have had her kids taken into care long, long ago.
    I want to get to know you, @Cazleep. You matter.
    Warmest best wishes to you,
    Richard
    @JennysDad
  • Pippa_ScopePippa_Scope Posts: 5,239Administrator Scope community team
    Hi @Cazleep, welcome to the community- it's great to have you here.

    You've had some brilliant advice from @JennysDad above, but just wanted to say hello. I have moderate ME myself and know just how life altering Severe ME is. As Richard says, please do let us know if we can be of assistance, and do get involved with the community: we have some lovely members who are always up for a chat! 
  • CazleepCazleep Posts: 11Member Whisperer
    Thankyou, for the kind and good advice, it kinda does feel warming to know someone has listened to me. Thankyou so much x.
    To answer your question @JennysDad about the anger and guilt. My kids have lived with me being ill for nearly 7 years, my eldest has moved out but my other girls are 17,14,9 years old.
    They have become used to me being in bed, in pain, and exhausted, they don't see me anymore, all they see is the illness. They don't want to have to do chores round the house  they are young carers, they have to do my job between them, as they have gotten older and I have gotten worse they get angry if I ask them to do something they get angry when I can't get my words out they have no patience I have become a burden, I see that, but they then feel guilty for being angry it's like a vicious circle. Their dad has found it hard to live with and they are just kids. Before I got sick I worked as a carer all my life in hospitals, nursing homes and in the community, I trained people I know what it is like to be cared for and be the carer some people just aren't made to be in the caring profession and my family didn't choose this I understand what they are feeling. I make them feel bad about themselves and I get that I can't help being ill, but it is what it is. 
  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Hello @Cazleep and thank you - sincerely - for your honest and frankly moving response. It is easy to understand both your feelings and your children's.
    9, 14 and 17. I want to keep that closely in mind. And yes, it is awful - awful that Nature has hurt you and, in the process, hurt them.

    We need, if we can, to find some way to break the vicious circle.

    They would not feel guilty for being angry, of course, if they were not actually good, decent people. There are plenty who would simply slide into selfish hate, pushing the problem away from themselves. They have not done that. And overall, I've found able-bodied children and siblings of the disabled among the best, bravest and most courageous people of all.

    And: "I make them feel bad about themselves"? Forgive me, but that's not actually true. Your circumstances do that. When my daughter was alive, the only disabled member of our family - and a very small member at that - my wife and I realised that we had become a 'disabled family'. All our lives were constrained, even the lives of those we associated with were constrained, by Jenny's condition. And what made us most 'a disabled family' was that there was not the support out in the world to take any of the weight off our shoulders.

    The question then arises: who is supporting your children? And if they're not getting much in the way of support, can we find some for them? This Carers UK link might be worth a look https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/young-carers-and-carers-of-children-under-18

    I want to reach out and hug you all, @Cazleep. Perhaps you'd give your children my profoundest respects and best wishes, and whatever else, please, please stay in touch.

    Your friend, if you'll have me,
    Richard
    @JennysDad

  • CazleepCazleep Posts: 11Member Whisperer
    Thankyou, @JennysDad you don't even know how much your kind words have helped me, it is difficult to put into words how I feel because of brain fog I actually can't find the words if not for auto correct I wouldn't even try. I apologise if I fall short when trying to express my thanks and when I  say I can't even imagine anything worse than losing one of my kids my heart goes out to you and your wife the pain must be immense yet here you are helping people like me and my family, Thankyou doesn't come close xxxxx
           
                      Your friend,
                          Carol x
  • Sam_ScopeSam_Scope Posts: 6,791Administrator Scope community team
    Hi @Cazleep
    Im sorry to hear you are having such a tough time.
    Mind has some support and advice around struggling with mental health:

    Going to your GP is a good starting point. It is common to feel worried about talking to your doctor about suicidal feelings, but they will be used to listening to people who are experiencing difficult feelings.

    Your GP can:

    You might find it helpful to have a look at our pages on seeking help for a mental health problem for tips on how to prepare for your GP appointment.

    If you don't feel you can keep yourself safe right now, seek immediate help.

    • go to any hospital A&E department (sometimes known as the emergency department)
    • call 999 and ask for an ambulance if you can't get to A&E
    • ask someone else to contact 999 for you or take you to A&E immediately

    If you need some support right now, but don't want to go to A&E, here are some other options for you to try:

    Scope
    Senior online community officer
  • CazleepCazleep Posts: 11Member Whisperer
    Thankyou, Sam_Scope I will look into the pages you have given me but the gp "can't do anything more to help", she said but she did alot for me, like the pain clinic, my diagnosis, anti depressants, meds.
    Before she left the surgery I was already having to have telephone appointments as am housebound/bedbound so getting to appointments t me means pain and exhaustion for up to two weeks and even on the phone now its a different doc each time. What you have given me will I am sure help a great deal.
      
                 With thanks,
                           Carol x

  • Sam_ScopeSam_Scope Posts: 6,791Administrator Scope community team
    Hi @Cazleep
    Have you had any contact with Community Mental Health Teams?

    CMHTs support people living in the community who have complex or serious mental health problems. Different mental health professionals work in a CMHT. This section explains what a CMHT can do and how you might get referred to them. It also explains what to do if you have problems with your CMHT.
    • Different mental health professionals work in a CMHT. These professionals are from health and social care backgrounds.
    • These can include psychiatrists, psychologists, community psychiatric nurses, social workers, and occupational therapists.
    • They work with you to help you improve your mental health.
    • You might get help from the team as a whole, or from just one or two professionals.
    • You usually get referred to the CMHT by your GP.
    • If you have complex needs you might be placed under the Care Programme Approach (CPA).
    Scope
    Senior online community officer
  • CazleepCazleep Posts: 11Member Whisperer
    Hi, Sam_Scope,
    I don't think so, I had a team of all different medical professionals when I was being diagnosed with ME/CFS and Fibromyalgia, they diagnosed me, I would have an appointment once a month at my surgery but in the end I couldn't get to my appointments and they couldn't do phone appointments.
    I will find out when I contact them.
    I have been referred to talking therapy and the crisis team but I crashed at the time due to stress at the time.
                       Thank you,
                           Carol x
  • CazleepCazleep Posts: 11Member Whisperer
    So sorry, @JennysDad, I didn't yet respond to your question about the kids getting support x
    I made sure they got help and asked my gp and the schools from the beginning they have been with crossroads young carers and have school councillors if they need to talk. The help they have received especially from young carers has been amazing the kids love it, the older two don't bother as much now they are out with friends but there is the walk in at school too.
    They have become like an extended family. X
                          X Carol x
  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Hello Carol @Cazleep and thank you for getting back to me. Can I hope from what I read that you are feeling a little better?
    Warmest best wishes, always, to you and to your family,
    Richard
    @JennysDad

  • CazleepCazleep Posts: 11Member Whisperer
    I am getting there richard, thanks to you and the people here x
    Best wishes to you and your family x Carol x
  • jane1973jane1973 Posts: 175Member Chatterbox
    @Cazleep big hugz to you, stay strong xxxxxx
    Hugz to everyone xx
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