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I really hope someone can help me.

seamonkeyseamonkey Posts: 323
I have turned to your site for help and support as I cant find any here. I have arthritis in my back including bone growths on spine. I am always in pain dispite taking lots of prescribed pain killers. My legs are weak and I have difficulty walking due to pain etc. I am 32yrs old have 4 children 13, 11, 10 and 5. I work but have had to cut my hours dramatically. I want some one to tell me if this is it is this how i will be? Always struggling physically and emotionally. Feeling guilty and thinking why me. Recently my partner left. I had to allow him back due to the fact I just couldnt cope any more with day to day stuff. I have no help apart from my kids and my partner. He works full time and isnt the caring sort. Im just getting the house kitted out with stuff from the OTs which is great in a way but makes me feel old. On a good day I wonder if im making up the pain etc on bad days. I think It surely cant be all that bad. But then a bad time hits and I can hardly move but the kids still need fed clothed taked here and there and looked after by their mum. No health care person has given me any answers or indeed says much at all. Just gives me more pain killers and sends me home. I had to ask for OTs to come as I felt I was relying too much on the kids. There must be more help advice etc somewhere. I hope some one can help im starting to wonder if im being punished or if ideed its real

Comments

  • elnafinnelnafinn Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Seamonkey

    I believe that you have found the right place where people can help and support you. I am very sorry to read your story. I think it may be a good idea if you telephoned the Helplines as it is so much easier to talk things over than by message.(Tel: 0808 800 4050) The helpline will of course reply to your message and probably suggest that you call them. Many forum members and others have been helped greatly by the helplines and have nothing but praise for their patience and expertise. They are a wonderful, dedicated team who talk to people daily about arthritis related matters and problems.

    Please do not feel guilty, you have done nothing wrong and you are not being punished. I think you are doing well, to be looking after your four children and working, with very little help from anyone. especially the medical profession, from what you say. It is common for arthritis sufferers to have good and bad days. That is how it seems to go. It is difficult to pace oneself on the better days and there is the tendency to overdo it.

    Hugs
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • frogmortonfrogmorton Posts: 25,127 ✭✭
    edited 30. Nov -1, 00:00
    Hi Seamonkey (have your kids got some seamonkeys??)

    I have been a single parent with just these sort of issues. I know how it feels so much using your kids to help you and feeling like you are not a good Mum (you are or you wouldn't think it!) and you are letting them down.

    Ok 1) it is real and yes it sometimes comes and goes

    2) have you ben seen by a specialist?? There maybe something which can be done for you

    3) have you checked you are getting benefits you may be entitled to?(then you may not miss work money so much) You might even be able to afford some help with the kids.

    4) The kids will not be little for ever - mine were 5 and 8 when I had my back operated on and now they are 15 and just 13 and I have a stepdaughter of 15. Now they are so much more independant. Kids need you and your love far more than what you think is the perect Mum. Give 'em micro chips and sauage when you are bad and don't feel guilty - they will live and you can rest yourself more.

    Can't think of anything more at the mo

    Love

    Toni xx
    Love

    Toni xxx
  • helpline_teamhelpline_team Posts: 1,820
    edited 30. Nov -1, 00:00
    Hi Seamonkey

    I am so sorry to hear you are having so much difficulty and pain. I'm pleased to hear you have called in the OT's though as this should take some pressure off from you and the kids.

    If your legs are weak and you are experiencing severe pain and fatigue, it may be a good idea to ask your GP for a referral to a physiotherapist as exercise is the best way to maintain your yourself when you have arthritis.

    I'm not surprised you are feeling so low. You know you can always call our free helpline if you would like to speak to someone. We also run self management courses where you can meet others with similar issues to you and learn how to manage life effectively. There is more information on the website re courses: http://www.arthritiscare.org.uk/PublicationsandResources/Selfmanagement/Workshopscourses/Self-management

    If you have had problems re work it may help to read our booklet called Working with Arthritis which you can either down load or we can send you an information pack. There may also be benefits you may be entitled to: http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Booklets

    Although it feels like punishment, we do understand that what you are going through is very real and demoralising. Please do have a look at the booklets on the website or private message us with your full name and postal address and we can send you an information pack.

    We look forward to hearing from you, but in the meantime I am sure you will get lots of support from other people on this site.

    Best wishes

    Simona
  • seamonkeyseamonkey Posts: 323
    edited 30. Nov -1, 00:00
    Thank you for getting back to me so quickly. I have seen specialists and had scans etc. Its just the why me? I seem to be struggling with. Kids are great so much help and just having them gives me a reason to get up. Over the past few days I have had to be lifted up out of bed as i just cant do it my self and the kids have been so much help. We dont have seamonkeys but maybe we should get some! I will see about going to the Citizens advice about any benefits but this seems to kind of admit the problem. I so dont want to give up work but as a childminder i know its doing me no good. I really enjoy it but its just the physical difficulty. I live in a remote place and would like to speak to others in a similar position but i dont know of any groups etc. I would really like for someone to just tell me how it will be. kind of like a worst case senario. Then I can make plans etc I feel in limbo at the min and I hate it.
    Thanks again for getting back to me. I will try and see what the forums can help me with.
    Seamonkey
  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭
    edited 30. Nov -1, 00:00
    Nobody can tell you how it will be - we each have our own version of this rubbish, it develops differently and at different rates from person to person - the only common ground we all share is the fact that we have a form of arthritis. The only answer to 'Why me?' is 'Why not?' I remember hearing an interview with a man whose wife had been murdered. He said something along the lines of 'I thought these things happened to other people, then I realised that I am the other people.' Quite so.

    Arthritis not only affects us, it affects those around us. Healthy people cannot understand how our condition can vary so much from day to day, even hour to hour - and why should they? If you have not experienced any form of long-term pain yourself, it is very hard to understand it in others. Over the years I have learned to adjust to the demands of my PA and not to get upset by the things I can no longer do. I need that energy for other things, not such negative emotion. I am sure that over time you will develop strategies for coping, you will learn to conserve what energy you have for the tasks that matter, you will learn to rest whenever you can, and your older children will learn to be more considerate and helpful. Talk to us on the forum, we know what it is like, we know the frustration and the anger and the irritation and fears and annoyance - we all know it very, very well. LWA is the place to go with questions about treatments, meds, dealing with families, etc - also the Helpline folk are very good, ring and chat to them, they do understand what it is like. I hope you are having a better day today. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • RallymadRallymad Posts: 84
    edited 30. Nov -1, 00:00
    Hello Seamonkey,
    It's very easy for people to say they know how you feel, to a degree we all can on here. Like you I am a single parent, two children 14yr and 9yr, my son was my helper and yes we tend to rely on the kids a lot, but hey, DO NOT FEEL GUILTY ABOUT IT!!! My kids helped me a lot, now my son lives with his father and have my daughter still with me, she loves being my 'Nurse', I did think I was expecting too much from her, but hey, they depended on us to help bring them up through this world, so really they are only paying back a little kindness (okay so it's maybe a little earlier than expected, we want them to pick our nursing homes etc.) There are things in place at school for young carers, they can talk to the kids and give them time outs if need be, have you enquired at the school, even the
    school nurse?
    When I got a 'diagnosis' I wept, went through a suicidal stage also, but at least I had an idea of what the problem was and what I could do about it. You either lie down to it or kick it up the a*s and try to get on with it as best you can. No one can see it so it doesn't exist.......it does!!!! I got diagnosed with sero negative rheumatoid arthritis, it doesn't show up in the blood tests, that doesn't make it hurt any less, doesn't make things any easier knowing what it was but it did give me a bit of a shake up, how I was living my life. Things will get easier, if you want to get in touch with me we can swap disasters lol, hope I havn't ranted on and put you off.
    Arlene x
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