Disabled people
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Loneliness

stevenotts01stevenotts01 Member Posts: 7 Connected
edited July 2 in Disabled people
Hi I have been a member on here for a long time but haven't really used this service. I suffer with fibromyalgia and ME and everything that goes with it .I have Compressed disc's in my lower back and have just found out I have 3 in my neck. After a break of 1 1/2 years due to covid I am finally getting injections in my back again at the pain clinic.
All that said I am a married man with 2 children 6 and 9 years, but I feel so lonely.  My wife even though I have explained everything, she still doesn't understand what I go through every day. If I mention my pain and that I have done to much she says yes you keep saying, If I suffer In silence she insists in wanting to know what's wrong! and if I say oh nothing she then takes it personally. Today while she was at work I did as much as I could but when she came home she says what you been doing all day, and why haven't you done this, I've been at work all day I don't need to come home and start again.
I feel so lonely, How do you explain to anyone how you feel and what your going through who doesn't understand or see your disabilities because there not visible. 
I am 63 my wife is 53 .many a night I have gone to bed and preyed that I go to sleep and don't wake up, I cannot remember the last time I was happy and laughed, oh yes I can before covid and the 1 night a week I get to be with my mates.
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Replies

  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    Hi and welcome to the community 

    I am sorry you are feeling lonely and you can't get your feelings understood 

    Have you seen your gp about this 

    Do you  feel you could discuss this with your wife 

    Maybe have a date night and talk to her about it 

    We are here for you to talk to 
  • woodbinewoodbine Community Co-Production Group Posts: 4,498 Disability Gamechanger
    @stevenotts01 hi i'm sorry to hear how you feel it must be difficult, i'm lucky my wife has been great through my 23 year of ill health, but i can understand how it's possible to feel lonely even when you have a family around you.
    I hope now you have "found"us again that you feel able to join in with our conversations it really can help and some are great fun.
    As JANE says a chat with your GP might help, i've had counselling before and it has helped, maybe thats something to consider?
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • dazza70smithdazza70smith Member Posts: 1 Connected
    Brother i feel your situation and pain. As I was reading your message it felt as though you were writing about my life a few years back before I found the most amazing beautiful support outside of my family support group. I’m 51 and been a quadriplegic for ten years this coming July 16th. I know It’s a daily challenge to express how we feel especially when your what should be your closest support network struggles to understand your daily challenges. I’ve found that my children are the exception as for me they show a greater understanding beyond their years and it’s not just here and there but everyday. Not sure if you have children yourself but if you do have you found the same experience as I or have you found that as they become older that their understanding and support to lessen? Here is the amazingly beautiful support I mentioned at the beginning, Outside of my children’s support I’ve found the most amazing genuine support understanding and kindness within my local church. Honestly brother recommend them highly enough. They check in on me multiple times a week within fail. Nothing is to much or challenging. I’ve experienced the most amazing kindest and compassion from them. I found the Lord completely during my accident that’s not to say I wasn’t I believer before my accident I just wasn’t fully committed and I knew that amongst my friends it wouldn’t be cool to openly express my belief so I’m ashamed that I didn’t let the Lord into my life as a teenager or even in my twenties but honestly I wish I’d be braver and done so. He has saved my life a few times since my original accident but more importantly he Saved me. The wonderful thing is that your not already a believer it doesn’t matter because your local church will still welcome you and support you even if at the beginning you only need a friend or a kind compassionate ear they will be there for you and who knows where that path will lead you. Brother you will be in my daily prayers. I will pray that you get the kindness and support that you deserve. Take care and keep safe. Sending love and prayers my brother 🙏🤗♿️
  • chiariedschiarieds Community Co-Production Group Posts: 9,181 Disability Gamechanger
    Hi @stevenotts01 - I don't know if you've come across the 'The Spoon Theory,' but it's used to help others understand what people like yourself go through each day (me too), so I hope it may be helpful. Please see: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

  • stevenotts01stevenotts01 Member Posts: 7 Connected
    Seen GP without and with my wife. Have also sat down with her and explained it all again, at the time she says let me know when your are in pain and you can sit or lie on the bed, but guess what ,it's just words.
  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    Maybe show her this post sobshe can see how you are reaching out for help 
  • Cher_ScopeCher_Scope Posts: 4,038

    Scope community team

    edited July 2
    Hi @stevenotts01 How are you feeling today?

    I'm sorry things have been tough for you.  Living with impairments of any kind is hard at the best of times, but those 'unseen' to others can be particularly misunderstood.  Are the injections from the pain clinic helping to alleviate some of your pain?

    It sounds like your mood is being impacted, understandably so, by the challenges you face and I wonder if it might be worth revisiting your GP privately to discuss how you're feeling.  You said that sometimes you have gone to sleep and not wanted to wake up, and that's of real concern  :(  Please let others help you through this time and know that your doctor is there to support you.  You don't have to manage these feelings alone.  

    In addition to speaking with your GP, there are mental health organisations you can talk with anytime of the day.  These are:
    Always remember too, that if you think you might act on these troubling thoughts, to call 999 and ask for an ambulance immediately.  

    In relation to your marriage, it might be helpful to speak with Relate together?  Having that extra person to act as mediator and hold space for each person to express themselves can help break down barriers to communication, so perhaps give that some thought.

    Also, it sounds like the time you had socialising with your friends meant a lot to you and this is something you dearly miss.  Now that restrictions are easing, would you feel comfortable to meet up with them in some capacity, with precautions like social distancing and masks in place?  I know meeting with my friends can give me a real emotional boost and I'm sure your friends would love to see you too.

    I'm going to send you an email to offer additional support now, so please keep an eye on your inbox.

    Take care and I hope to speak again soon :)
    Online Community Co-ordinator

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