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Fed up

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dijon_di
dijon_di Community member Posts: 18 Connected
I don't think I'm depressed but I am so fed up being home all the time. I want to go out and meet people but there's no groups in the local area that interest me. I feel so lonely and over the years my friends have gradually drifted away due to family and work commitments. 

My family don't seem to understand my limitations (fibro, CFS, HSD). My fatigue means I spend 2 to 3 days in bed every week and it's not predictable how I will be on a day to day basis until I wake up in the morning. 

I'm finding my motivation has left the building, I have very little interest in anything. I wonder to myself if it's the lack of doing anything due to how I feel that's got me trapped in a vicious cycle. 

I think I just need some company, someone to talk and laugh with. My kids are all older and although I talk to them I feel I must drive them crazy too. 

I don't know if it's worth saying to GP how I am feeling as they'll just throw pills at me and that's not what I want. Went through 20+ years of antidepressants that did nothing to improve my situation - I feel how I feel is situational rather than actual real depression? But I also don't know. 
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Comments

  • Superbetty
    Superbetty Community member Posts: 448 Pioneering
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    Hi, I am so sorry to hear that. I am now stuck at home, although I have my family with me, but still, it is hard for me to not go anywhere and not having life I had before. I hope this forum will help you, as we are all here to help each other:-) I am sitting at home, with plenty of time, and I do know how it feels to feel lonely. You can message me anytime, I know it feels better just when sometimes you can tell someone how you feel. I have good friends, but when I was trying to be honest with them and tell them how I feel, I still feel they do not understand. I am sorry I cannot help you with any kind of advice, but please message me whenever, with good or bad things:-)Take care of yourself and have a good day:-)
  • woodbine
    woodbine Community member Posts: 11,796 Disability Gamechanger
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    your GP may be able to refer you for counselling which I have found helpful in the past.
    I know what you are going through 25 years ago our friends drifted away when I became ill, in the end we moved away once the kids had left home and putting lots of effort in we made new friends.
    Remember we are always here if you need to chat.
    2024 The year of the general election...the time for change is coming 💡

  • Beaver79
    Beaver79 Community member, Community Co-Production Group, Scope Member Posts: 21,737 Disability Gamechanger
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    Hello @djion_di I am sorry that you are feeling so isolated, Do you have any hobbies or have any pets? We are here to help and support you where we can. Perhaps have a look in the Coffee lounge under Categories for chats and games you might like to join in. We are always here to listen. Take care.
  • dijon_di
    dijon_di Community member Posts: 18 Connected
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    Hi @Beaver79, I looked at the coffee lounge earlier and found it hard to navigate, I think my brains too fried today. Took me ages to work out how to post 😅. Hobbies are playing saxophone, keyboard, reading, tinkering with computers and DIY. I find reading hard these days, can manage a page or two but can't get lost in books the way I used to. I struggle to concentrate on things. Short bursts here and there! 

    I lost my 9 year old pet cat in March and think that just magnified my loneliness. Ended up getting a kitten and he's taking up so much energy it's unreal, I forgot how crazy they can be! I sometimes wonder if I made a mistake getting him so soon but I honestly wouldn't change it, he's great and it helped me keep busy. 
  • dijon_di
    dijon_di Community member Posts: 18 Connected
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    @woodbine it's weird getting to that point where the kids no longer demand your time or need you as much. Mine all still live here but the two eldest are always out and about and my youngest is glued to Xbox *eyeroll*. Only so much conversation I can have with the wall 😅. 

    I started having problems with fatigue and my body not behaving when I was 28, took them till last year to give me answers.  (14 years... ridiculous really).I think it was my persistence over the past 15 months that got me answers. 
  • dijon_di
    dijon_di Community member Posts: 18 Connected
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    @Superbetty hi! That's very kind of you. I can't see how to message people though, don't know if its my age or my brain 😅. I'm feeling a bit better, washed down the garden chairs and have sat in sun for a bit, the wind just about blew me away though. Now back on sofa having cuddles with my kitten Arlo x
  • Superbetty
    Superbetty Community member Posts: 448 Pioneering
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    dijon_di said:
    @Superbetty hi! That's very kind of you. I can't see how to message people though, don't know if its my age or my brain 😅. I'm feeling a bit better, washed down the garden chairs and have sat in sun for a bit, the wind just about blew me away though. Now back on sofa having cuddles with my kitten Arlo x
    Glad you are feeling a bit better!! Well done for washing the chairs:-)No sun for me today, so you are lucky:-)I am also on my sofa, not feeling very productive, but does not matter:-) Have a lovely afternoon:-)
  • Beaver79
    Beaver79 Community member, Community Co-Production Group, Scope Member Posts: 21,737 Disability Gamechanger
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    Hi @dijon_di You are doing just fine. Short bursts here and there is good. It is easy to forget what young animals are like when you had an older one. Your kitten will calm down.  You cannot Private Message until you have 25 points I do not know how many you have. When you have enough points an envelope will appear beside the bell symbol at the top of the page. Keep going you will get used to the forum.
  • dijon_di
    dijon_di Community member Posts: 18 Connected
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    @Superbetty it got really cold this afternoon, glad I moved inside. Have been watching TV and half dozing. My mind drives me crazy, I keep thinking "I'll do such and such then such and such", then when I go to get up my body just nopes. I'm usually patient with myself but I've been constantly fatigued now for 15 months or so. I used to get maybe 3 weeks of the month I would manage to do stuff then a week I'd be wiped, but now I'm wiped most of the month. I keep hoping it will get better, but I think this just might be how I am now. It's just frustration, but I know I need to try and be kinder to myself. 
  • dijon_di
    dijon_di Community member Posts: 18 Connected
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    @Beaver79 thanks for letting me know about the messaging system, I don't have many points yet, still single figures I think. When my first cat was a kitten, my kids were 2, 6 and 7. I was probably that busy with them all I just don't recall what it was like. There's things Arlo does that makes me remember Alfie used to do it too when he was young. Little Arlo had his second vaccination today and has slept the whole day through since, I'm just hoping he doesn't take his mad half hour (two hours really) as I head up to bed 🤣. I always said I'd get a dog when Alfie passed. I expected him to be here for quite a few years yet. However I realise with the way I feel most days it wouldn't be fair on a dog, I couldn't give them the exercise they need. Had a dog when I was a teenager, did a lot of running with her, certainly couldn't do it now. Shame we can't bottle the energy when we're young to use sparingly as we grow older 😉
  • dijon_di
    dijon_di Community member Posts: 18 Connected
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    Turns out I have 23 points, I was mixing it up with my badges which are at 3.
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hi there @dijon_di just popping in to say hello, looks like you're settling in well, so if you do need anything or have any questions please do ask, and we'll do what we can. 

    I can see woodbine has mentioned asking your GP about a referral to counselling, which is great advice if you are finding things tough. You might not know you can also self-refer for support, without needing to go through a GP.

    Talking about how you're feeling can make a real difference, so please reach out here on the community, as you can see our members are very friendly and up for a chat :) 
    Online Community Coordinator
    Scope

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  • Superbetty
    Superbetty Community member Posts: 448 Pioneering
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    dijon_di said:
    @Superbetty it got really cold this afternoon, glad I moved inside. Have been watching TV and half dozing. My mind drives me crazy, I keep thinking "I'll do such and such then such and such", then when I go to get up my body just nopes. I'm usually patient with myself but I've been constantly fatigued now for 15 months or so. I used to get maybe 3 weeks of the month I would manage to do stuff then a week I'd be wiped, but now I'm wiped most of the month. I keep hoping it will get better, but I think this just might be how I am now. It's just frustration, but I know I need to try and be kinder to myself. 
    Hi, just saw your comment! I know how you feel, and yes, you need to be kinder to yourself. I always do what I can, if I feel like I just want to rest on the sofa, I rest on the sofa. Don't blame yourself if you simply need rest or don't feel strong enough to do things you would like to do. I know it must be hard. I am stuck at home two months now, I was quite active before, but you can do only what you can. You need to be good to your body, and to your mental health for sure. Just be good to yourself. Have a lovely afternoon:-)
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    Thanks for sharing your tip with us @Superbetty. Self-care in the form of doing what we need to do to take care of ourselves is super important. 

    As you say, you can only do what you can. Plus, we are always here for you @dijon_di if you wish to talk to us about anything or if there's anything else we can do to support you  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Hello @dijon_di

    I hope you are having a better day fatigue wise today! I have Inflammatory Bowel Disease and I became housebound, for 3 years, before I was able to manage my condition better by having surgery. I remember the loneliness and I wish I knew of Scope's online community then. 

    I was part of other forums and social media groups to try and make connections and one thing I did was start researching my ancestry. It was something that always fascinated me and when I tell you it's a never ending project, 5 years later and I'm still finding things every week. I met many people through ancestry groups and I wonder, is there an interest you have? You may find sharing it in Coffee Lounge could create discussions and we get to know you better :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • dijon_di
    dijon_di Community member Posts: 18 Connected
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    @Hannah_Scope

    Funnily enough I started looking at my ancestry in January, I can really deep dive it when my energy isn't too bad. It is really interesting! I keep hitting brick walls with it but then a small piece of info helps me continue again. 

    I had a day of lying up on couch dozing yesterday. Every time I dozed the door would go, I hate days like that! But to solve that I would need to stop ordering things online 😂. 

    I like your idea of posting about my interests in the coffee lounge, that would be good! 
  • dijon_di
    dijon_di Community member Posts: 18 Connected
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    @SuperBetty

    I had a period of bad fatigue in 2019 and spent around 3 months bedbound then a further year or so housebound. I managed to build up strength and managed to get a sort of normal-ish life again. During that period I permitted myself to rest so I don't know why I fight it so much now. My own worst enemy 😉 
  • dijon_di
    dijon_di Community member Posts: 18 Connected
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    @Alex_Scope
    Yes I conveniently ignored the counselling comment, I was apparently referred for CBT though when I got my diagnosis but haven't heard anything yet. I had years and years of psychotherapy, CBT and DBT. Finally discharged last summer so I felt free. The thought of it, I don't know, I just feel like I'm taking steps back instead of forwards.  
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    There are some great ancestry groups on Facebook for when you hit a brick wall. I love "falling down the rabbit hole" as I call it 😂 I once found a great uncle had served in the forces and from his records found his marriage and kids, then their marriages and so on and before I knew it, 2pm turned into 6pm! 

    Haha! I do that too! Glad you managed to get some rest today :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Also @dijon_di I go back to CBT often for top ups. I don't see it as a step back, more like a refreshers course :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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