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Feeling isolated again

Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
I've been in bed all day - slept about 16 hours today. I'm falling out with friends who just don't get how severe my illness is becoming and I'm seeing less and less of the outdoors. In the past three weeks I've only been out of the house 3 times. I'm now using an electric wheelchair which is making me feel like I'm seen as totally incapable and the pain I'm in is getting so so bad I'm taking morphine strength painkillers. I just want someone to come and watch a film with me or something like that but I'm losing out on so many things and feel I'm never going to make friends.

What do I do? unless people can come here it makes life so difficult.

Comments

  • *BananaMonkey**BananaMonkey* Lyrical Poster Posts: 5,306 Part of The Furniture
    Hey lovely. *hug*

    Sorry to hear how much your struggling. It sucks that your friends are not being supportive. I would totally come and watch a film with you, if I could. We all care about you.

    Have you tried to talk to your friends about what's going on?

    As adults your friends should be more understanding, they can't have expectations of you being able to just leave the house that easy when your in so much pain.

    With regards to all the pain, can the doctors do anything to make it less painful?

    Sorry for the really rubbish reply hun, always here if you need a chat :heart:
    " And everywhere I am, there you'll be, your love made me make it through, oh I owe so much to you "
    " So I say thank you for the music, the songs I'm singing, thanks for all the joy they're bringing, who can live without it, I ask in all honestly what would life be? Without a song or a dance, what are we? So I say thank you for the music, for giving it to me "
    '' It's a beautiful day and I can't stop myself from smiling "
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    I talk to people about what's going on and they just say that sucks and then don't ask me to come join them going out again. I'm loosing friends because I can't make it out and tbh people don't want to be seen with someone in a wheelchair (an tbh I don't want to be around bigots like that anyway).

    I'm on the equivalent of 30 ml of morphine a day - the doctors have pretty much given up on me. I'm putting on lots of weight because food is one thing I can still enjoy, even when I have stupidly tiddily portions because I can't really exercise it off. My hair is falling out (possibly just shedding lots, but it does come out in clumps at times) and I'm sick of feeling so lonely. The local support group is anything but supportive and I don't really know what to do. Most weeks I only see my mum, my PA and my EMDR therapist and that's it. I've tried to find groups to be part of and I'm struggling to find anything I'm interested in. I'm just hoping I get given a place on this MA cos if I don't I really don't know what I'm going to do - i've dropped my business idea because I'm not well enough to do it. I just don't know what to do.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Hey Miss-Riot,

    I'm sorry to hear you're feeling so alone *hug*

    It's not your fault that you're losing friends. You're in too much pain to do anything and it's times like these your friends should be making an effort to see you, so please don't put blame on yourself. Anyway, people who don't want to be seen with someone in a wheelchair is not fair at all and they don't deserve a lovely friend like you!

    I'm sorry if I should know this, but can I ask what MA is?

    30ml of morphine is very strong, I'm sorry to hear about how much pain you're in.

    I'm not really sure what to suggest. Have you thought about joining the book club or the film club on this site? That's if you haven't already. That's something to keep you involved with, and then you get to have a good natter with other people about the books or films every month.

    I just want you to know you're not alone, we're here and we're listening *hug*
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    MA = masters degree

    I need to get back into being part of the community, but I do need to actually see people and be around people. I'm in a real down at the mo as well - I feel pathetic and useless, and I really want to be left alone by my mother and PA and just do my own thing. I'm just really struggling.
  • *BananaMonkey**BananaMonkey* Lyrical Poster Posts: 5,306 Part of The Furniture
    Sorry to hear how much your struggling, but you are no way pathetic or useless, lovely.

    We care about you.

    Hope things start to look up for you soon. Stay strong <3
    " And everywhere I am, there you'll be, your love made me make it through, oh I owe so much to you "
    " So I say thank you for the music, the songs I'm singing, thanks for all the joy they're bringing, who can live without it, I ask in all honestly what would life be? Without a song or a dance, what are we? So I say thank you for the music, for giving it to me "
    '' It's a beautiful day and I can't stop myself from smiling "
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    I'm going to start to make some changes - I was talking to my PA and I need to get out more. I'm going to at least plan to go out one night a month. I might be unwell but I'm not dying and I need to live my life like it could get better, or at least try to.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    That's amazing, well done you! *hug*
  • *BananaMonkey**BananaMonkey* Lyrical Poster Posts: 5,306 Part of The Furniture
    Aww really happy for you lovely. Proud of you :)

    Sent from my GT-I8190 using Tapatalk
    " And everywhere I am, there you'll be, your love made me make it through, oh I owe so much to you "
    " So I say thank you for the music, the songs I'm singing, thanks for all the joy they're bringing, who can live without it, I ask in all honestly what would life be? Without a song or a dance, what are we? So I say thank you for the music, for giving it to me "
    '' It's a beautiful day and I can't stop myself from smiling "
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    You say well done, but until I get into a good habit of it, its nothing more than a brain wave. I have been looking at some more positive things such as Superbetter and putting more into my ideas for thesite's very own pinterest positivity board (does thesite have it's own pinterest account yet?). But I have good days and bad. Yesterday I got a bag of shopping stolen from me whilst out with my PA and using my new electric wheelchair. Left me feeling incredibly vunerable and just how much of a target I am to some people. I still feel really crappy about being presumed to be more able than I actually am.I had a couple of glasses of champage and got up too fast on several occasions last night and I now realise I've put my back out. No one else would have known that asides me, but I felt that others around me might have wondered what I'm doing. I do honestly want to get better, but at my pace and I'm not sure what "better" would be for me. It might be well enough to work, but only part time, it could be much more than that but I don't know whats realistic anymore.
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