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To those disabled, and unable to work - How do you occupy yourself on a day-to-day basis?

EarlysoundEarlysound Member Posts: 37 Connected
edited June 2019 in Coffee lounge
Hey :)

I'm currently twenty-nine years old, and unable to work or volunteer. I am feeling a little lost as of late, and this is resulting in a recurrent feeling of depression.

I achieved quite a lot last year, and made a big step towards independence. I moved out from under my mum's roof, and into my own apartment! I never lived away from home before, so it was both a little exciting and scary at the same time.

As a result of not being able to work or volunteer, I have nothing but an abundant amount of time on my hands. The question “What do you do?” has become synonymous with “Who are you?” and something I am asked a lot, and never know how to respond.
I live in a small rural community, and I wish to keep my life as private as possible. Thus, I do not discuss the fact I am on UC/PIP, and I never reveal to people I know that I can't work.

I recently started attending a local Yoga group in the afternoons along with my Brother. It's a mixture of retirees/stay-at-home mums, and so I often get asked "What do you do for work?" as they're often surprised at my availability/freedom to attend things.

I've tried deflecting the question, and for the most part I manage to do so with limited-success. Yet, sometimes I have resorted to telling people "I'm self employed, and work from home doing ______".

I tell myself it's for privacy, and to stop people feeling they're free to comment on my day to day activities. Whilst, also offering up a reasonable explanation to my flexible (100% empty) schedule.

I'm interested to hear from those in a similar boat, and how you address the above questions. Also, how do you currently keep yourself occupied? What is your general day to day routine?

P.S.

I want to be clear I am not ashamed of being a disabled individual.
I arrived to the above through a history of negative remarks, and one malicious false report to the DWP. I've tried being open in my previous town, and it did not work out too well. I would get comments in regards to spending 'their' tax money, and what I should, would and could not spend the money on. Why should I get anything, when they've worked all their lives etc etc etc

Replies

  • Ami2301Ami2301 Community Co-Production Group Posts: 7,736 Disability Gamechanger
    Hi @Earlysound I am sorry to hear about your past negative experiences. Did you know you can volunteer online?

    I am one of Scope's online community champions - We welcome new members, signpost members to information that is relevant to them, ensure the community is a safe and supportive place for everyone. Also, we report any posts that do not follow our community guidelines. Plus, we respond to any unanswered posts.

    There are no set hours, you can volunteer as little or as much as you would like! If this sounds like something you would be interested in, our lovely senior community Officer @Sam_Scope will tell you all you need to know :)

    I understand how you feel as when I lost my job back in June 2017, due to my health deteriorating, I became severely depressed. I adored working and being part of a team and I missed it terribly.

    In February, last year, I came across Scope. I wanted to talk to others who truly understood what I was feeling. 1 year on and I absolutely love being part of our community. Its taught me a lot about myself, how to cope with my disabilities, I've learnt new things. I've also met some extraordinary people who I can call very good friends.

    I have physio once or twice a week. Sometimes hospital and other appointments. Mostly, I commit my time to the community. I also blog about various aspects which I face living with rare and chronic illnesses.

    If you ever would like to talk or vent, my inbox is always open :)

    Hi @Neeya welcome to the community! I completely agree with you in regards to social media being a lifeline. Without it, I honestly don't know what I would be doing. I'm able to talk to family and friends often. I've recently started talking to my 2 nieces via a messenger which I love as 1 of them lives over 100 miles away. 

    Being an active user of social media has enabled me to meet some incredible people and be offered amazing opportunities. Therefore, I am very grateful for social media!
    Disability Gamechanger - 2019
  • deb74deb74 Member Posts: 763 Pioneering
    hi Earlysound. I used to work as a volunteer in a charity shop and then left to work as a sales assistant, after 5 months I hurt my shoulder badly and had to give up my job and go on esa. I have a lot of hobbies including making jewellery and cards which I have now turned into a business. I suffer from ME, spina bifida, scoliosis, hydrocephalus, oesteo arthritis and cervical spondylosis as well as that dodgy shoulder and I find working for myself gives me the freedom to work at my own pace and take a day off if am having a bad day.
  • [Deleted User][Deleted User] Posts: 587 Listener
    Hi, I have severe anxiety, agoraphobia, social anxiety, depression and FM, I really don't do much and struggle to find things to occupy me because of my lack of concentration and attention span, plus I'm always tired. I used to be into online gaming but nowadays I don't really enjoy it, I don't like mixing with people at the best of times and would play online games on my own.

    I don't get asked if I work because I really don't mix with anyone other than my Mum and Son and it's nothing to do with anyone else what I do and don't do.

    I often wish I had some hidden talent so I could use that to get a job from home then I wouldn't have to rely on certain benefits which cause people so much stress. I originally wanted to be a carer for disabled people, but now I'm the one being cared for.

    Maybe I ought to look into being a community champion. I've been reporting posts and such.
  • zakbloodzakblood Member Posts: 419 Pioneering
    been on incapacity and now ESA apart from on the 14th of this month when i again failed a medical assessment but appealing, so how do i spend my time, well for the last 20 years, a school governor in the evenings when ever i can and feel up to it, then all day almost every day, test games for free from all over the world, would love to do it for a job, but while i've been doing it for 20 years now, no qualification, little ability to go out, either mentally or physically to try and get them, so sit at the pc and test, write to a given company, as to be a free tester for them and then word of mouth, you get passed around and end up all of the place, spending as much time as you can on a given task, rewards, nil, well you get to keep the game in the end, but as most tester after a given amount of time would never play it again, after testing it for so long, you do it to fill in the day, and find stuff some others don't have to before release, been doing QA work again for free for about 5 years, but as i can't ever say from one day to the next how i'll be, i just do what i can, when i can and everyone seems more than happy for the help, so more of a hobby than a job, keeps the brain active and when your not feeling so well, can do it in bed even on the laptop, or just say no feedback today, not feeling so well, and they understand, unlike the assessors who seems to think now days everything is on looks alone, and not how you feel generally, liked the comment above about bathrooms, one of many reasons i don't go out so much, with most places now closing there's down, been on tablets now so long, got more than a few complications from long term meds use, so toilets are a need not a luxury i can do with out, unless i take plenty of changes of clothes every where i go 
  • April2018momApril2018mom Posts: 2,869 Member
    I have a Specific Learning Difficulty. It does not stop me from working part time as a childcare provider.  I love writing. I don’t really have much free time but I either watch television or do something that keeps me busy and happy. 
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    I was 47 when I started having serious issues which led to spinal surgery in 2005 however, in 2006 other spinal issues were discovered and since 2004 I have been unable to work. I suppose I don't get some of those comments because I did work for over 25 years and have always looked tough and imposing (completely the opposite of how I actually am).

    After suffering so long and having a progressive condition making me more and more disabled I now find it very hard to do anything much except playing a couple of online non-competitive games and watching TV but in the past have spent time at a local disability centre, joined groups using MEETUP (when I was still able to go out). I also joined a local Bridge club and visited and helped family members. It actually seems that I have spent my whole life helping others but, now that I can't and need help myself, get no help at all and have to try and cope on my own. If a person is religious then there are often extra things they can organise that could me helpful as well. There are also many sites like this where you can get into contact with other like-minded people who do not judge. I guess the best thing to do is to go google mad looking for anything relevant and nearby.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • EarlysoundEarlysound Member Posts: 37 Connected
    Thanks to everyone for all the responses, in the last couple of days I thought I would give dry pastels a go as I loved blending all the colours together with my finger as a kid. I think I'll enjoy experimenting with colours etc.

    I also came across a few videos of some people who're running their own business making handmade soaps and shampoo bars, and they give you tutorials/recipes on making your own soaps and shampoo bars, it was interesting. Not sure what I'll do with an abundance of soap and shampoo bars, but I guess you could save money in the long term with excess soap / shampoo bars. 
  • April2018momApril2018mom Posts: 2,869 Member
    Why not see if you can get a qualification in something that interests you or not? Learn direct run online courses for a variety of people or you could always see if there are any adult learning centres near you. 

    https://www.learndirect.com/



  • woodbinewoodbine Community Co-Production Group Posts: 4,413 Disability Gamechanger
    I had to end my successful career 22 years ago at the age of 38 due to my severe epilepsy, at first I was bored to tears (literally), but now I try and achieve(do) something everyday when possible, at least then I feel like I have achieved something, most if not all our neighbours know about my condition but I never ever discuss my benefits with them.
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • tc55tc55 Member Posts: 7 Listener
    I am 63 years old and have not been able to eork for 20 years.I have Chronic Fatigue Syndrome but don't like to dwell on it. I  have no choice but to sit down for most of the day. I read, listen to audio books, play computer games and do jigsaw puzzles but even so some days I could scream with boredom.
    Living on your own doesn't help, I have 4 children and for me silence is deafening, I listen to a lot of podcasts especially when television isnt good.
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,997

    Scope community team

    What sort of audio books and podcasts do you listen to @tc55? It sounds like you've got a range of interests to keep you busy, but I agree (even as a bit of a loner myself) that a lot of interests can be a poor substitute for other people. How old are your children?
    Senior Community Partner
    Scope
  • tc55tc55 Member Posts: 7 Listener
    The skeptics guide to the universe is a really good science based  podcast, the infinite monkey cage is another science based one with some comedy as well. The hurricane is about a man spending a long time in prison for a murder he didnt commit. Untold: the daniel morgan murder is good.

    My children have all left home they are 41,39, 35 and 32, spread around the country, my son Daniel(35) has a 21month old son who enjoys winding up his dad just like Daniel did to me.

    The audiobooks I listen too are a mixture of light books to listen to when I go to bef a and something more interesting during the day, at the moment I am listening to a book about one of Nelson Mandela's white secretaries, I have a great deal of admiration for him. Philip Pullman's dark triology are good for listening to in bed also listened to the Harry Potter books Stephen Fry reads them and he makes a brilliant job of it. It is well worth joining audible its £7.99 a month but the books are generally over £20 to buy. The hunt fot the red october is a really good book.

    I can understand you want to keep your health problems
    private I am a private person I hate dwelling on my problem and do not like to be fussed over.

    Hope you find something among my suggestions that you like.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @tc55, they all sound really interesting! I've heard good things about the Harry Potter audio books as well! Not had the chance to listen to them myself though!
    Scope

  • tc55tc55 Member Posts: 7 Listener
    They really are brilliant but join audible otherwise it will be expensive.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Thanks for the recommendation @tc55 :)
    Scope

  • Kell430Kell430 Member Posts: 59 Courageous
    I haven't been working since 25th March this year, due to waiting for surgery and my work not allowing me to sit down when I absolutely need to ( i work in a care home).  So I too am looking for things to do to pass the time, at present I can't walk very far and I don't drive,  I do tend to read and play online games, but I like to be outside weather permitting xxx
  • April2018momApril2018mom Posts: 2,869 Member
    I also am currently doing a puzzle book my mom sent me for Christmas. I have emailed a music teacher as I want to begin learning a music instrument as well. I have also investigated the option of doing French lessons but I have very little money at the moment. I enjoy baking. Today I made a batch of biscuits and cakes with the kids helping me.
    What are some more low cost options for entertainment? We are members of our local leisure centre and library too. 
  • 2louises2louises Member Posts: 5 Listener
    This situation scares me. My daughter is Autistic and has only one more year left at school. My daughter wants to go college and learn performing music, but her school doesn’t think she’d cope. I don’t know, I think with right support she could. Wether she’d get that isa different matter!  She needs to kept interested or she gets bored and just walks out or starts doing her own thing. What we’ll do if she can’t go I’m not sure. Her own social worker suggested YouTuber which I wasn’t impressed by! (no disrespect to those that do) .
  • RSISolutionsRSISolutions Member Posts: 113 Courageous
    I mainly go on Eventbrite and search for free or cheap things to attend.

    I was previously an engineer so I am aware of many professional organisations that put on lectures, seminars and conferences. So I attend lots of these. The lectures are normally free and for the seminars and conferences sometimes you need to pay. I write to the organisations, explain my situation, ask them for a free ticket and transport. Often people are very willing to help and are sympathetic. When I get lifts I see it as a way of networking and perhaps finding out about work and getting back into work.

    I also attend a local church which gives me a great way of having social contact with people. There are lots of different departments to volunteer at and if you are not reliable, and tell them you're not reliable they are often ok with this. 
  • GeoarkGeoark Member, Scope Volunteer Posts: 1,375 Disability Gamechanger
    @Zebra88

    One of your activities made me smile - rock painting. Someone had painted a frog on a smooth stone and then put it on the edge of one of our grass area on the estate. I was surpised that it lasted a couple of weeks before it disappeared, assumedly to find some water, but it did make me smile at the beginning of the day and at end when I walked past it. 

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • jolewjolew Member Posts: 25 Courageous
    Most days I paint, I think it is the only positive result of having to retire at only 49! When I was working I had no time for art. Art was my main subject as a teaching student but I didn’t pursue this as a hobby after I left Uni. What I now enjoy most about art is there is so much to learn and many different ways of making a picture. It is always a challenge! Enjoy your pastels Ealysound.
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,997

    Scope community team

    What sort of things do you paint @jolew? Would you be willing to share any with us? I'd be interested to see. :)
    Senior Community Partner
    Scope
  • jolewjolew Member Posts: 25 Courageous
    @Adrian-Scope I have mainly been learning to paint watercolours over the last few years. I paint all sorts of subjects from flowers to landscapes. I have been very frustrated lately as I feel I need to settle and find my style. I am willing to share, I keep an album in my ipad of most of my paintings. I can post a few here how many should I post.
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    I had to give up my last job as a Child Care worker in 2017 due to my deteriorating health after an hip replacement and I have Spina Bifida.  It was hard to come to terms with at first, but gradually I have got used to it.  I am a member of a local knitting group which I really enjoy being part of as the ladies are really friendly and I am loving doing the knitting.  I also have a mobility scooter that I enjoy going out on to the local shops, library, etc.  I live in a rural area too so the scenery here is really pretty and I enjoy just getting out when it's nice and sunny.  I like to cook and enjoy trying out new recipes.  I visit my family and friends when I can, although that can be difficult at times as they live over an hour away from me.  My husband writes books so from time to time I help him if he has any readings at schools or if we are going to any book fairs to sell books and I really enjoy chatting to people there.  I have newly started as a Community Champion here at Scope so am really enjoying the experience so far and would recommend doing this to member.  I also am a member of another couple of online forums which I participate on at times and am looking into starting a blog.  I will admit that I do miss working at times (especially when I meet up with the friends I worked with) but realise now that I am in a new chapter of my life and just try to keep as busy as I can.  I have a mad cat also who loves playing endlessly so if I am at home and she is awake then I don't get a chance to become bored - lol!  :smiley:
    Winner of the Scope New Volunteer Award 2019.   :)
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @jolew,
    Wow!  Your paintings are fabulous!  It must be a good feeling to know you have such a wonderful gift.  :smiley:
    Winner of the Scope New Volunteer Award 2019.   :)
  • jolewjolew Member Posts: 25 Courageous
    @Ails, thank you! I am Still learning, and practicing skills. I believe most are capable of learning to draw and paint if they have the will to put in the practice and enjoy the process. There are many magazines and Youtube demonstrations that will teach step by step how to paint or any other art or craft that takes your fancy. I love learning new things!
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    You are welcome, @jolew.  All of your practicing is certainly paying off!  My dad is a very good drawer and enjoys it.  You are right in saying that you can get many online demonstrations for arts and crafts.  I like to knit and sometimes watch YouTube tutorials on it as still learning too.  It's great to learn new things!  :smiley:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,997

    Scope community team

    Thanks so much for sharing these @jolew, they’re very impressive! I wish I was in any way artistic. What I picture in my head is never what materialises on paper. Do you have a piece in progress at the moment?

    What sorts of things do you knit @Ails and is it children’s books your husband writes? 
    Senior Community Partner
    Scope
  • jolewjolew Member Posts: 25 Courageous
    @Adrian_Scope, thank you, but like you what I hope to achieve doesn’t always happen lol! At the moment I am learning oil painting with a palette knife, looks easy when you watch an experienced person dong it but it is far more difficult than it looks.
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @Adrian_Scope,
    I am still very much a beginner with my knitting and have only managed to knit a couple of scarves so far and some squares for a blanket.  I have just started a children's cardigan so will see how that turns out as I am not that good - lol!  I do enjoy it though.  Yes, my husband has had 2 children's books published so far and has written an adult short story (yet to be published) and is currently writing another story about space.  He has a flair for writing, but then I am biased - lol!  :smiley:
    Winner of the Scope New Volunteer Award 2019.   :)
  • WaylayWaylay Member Posts: 949 Pioneering
    I miss going to knitting groups. I've basically been hiding in my bedroom for 1.5 years.
  • Kell430Kell430 Member Posts: 59 Courageous
    @jolew great paintings xxx
  • jolewjolew Member Posts: 25 Courageous
  • ScoliFibroGirlScoliFibroGirl Member Posts: 46 Courageous
    Ome thing that’s my lifeline is distance learning , it gives me a chance for try and finally get a a degree and I can do it from the comfort of home.. I am
    not giving up.. i am also a huge lover of forums, chatrooms, music and I adore YouTube and Netflix. I find that i listen to music, radio, Spotify, podcasts, so I don’t get lonely and so it doesn’t feel depressing watching daytime tv.. 
  • April2018momApril2018mom Posts: 2,869 Member
    2louises said:
    This situation scares me. My daughter is Autistic and has only one more year left at school. My daughter wants to go college and learn performing music, but her school doesn’t think she’d cope. I don’t know, I think with right support she could. Wether she’d get that isa different matter!  She needs to kept interested or she gets bored and just walks out or starts doing her own thing. What we’ll do if she can’t go I’m not sure. Her own social worker suggested YouTuber which I wasn’t impressed by! (no disrespect to those that do) .
    Perhaps try to find disability exercise classes? Use the Internet to find activities. Have you tried RDA? 
  • BingoBingo Member Posts: 43 Connected
    Music for me (When I am not doing political stuff on social media).  I set up my own recording studio in what used to be my office,  That sounds more impressive than it is.  Couple of cheap keyboards, guitars, bass etc that I have collected over the years, couple of microphones and some recording software.  Its not Abbey Road!  :D  I can spend hours in there that pass in a heartbeat.  Recently started working with a very talented female singer who is at the other end of the country.  Technology allows us to record remotely.  She needs a better mic but if anyone is interested here is a recent recording of "Wicked Game" we did. (We both do our own stuff as well).  https://www.youtube.com/watch?v=XigbSyma4Ak

    Just picking up a cheap second hand guitar from a charity shop for twenty quid could be a gateway for years and years of enjoyment if you have the time.  I cant sing and Im no Eric Clapton but its never stopped me.  :)
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Earlysound Thank you for sharing.. Making your self keep yourself motivated.

    Find what you like to do. I know it is never easy to be disabled have an illness or a condition.

    The most essential  aspect of that is how you deal every day with it. Be good to yourself not what others think of you.

    I have bad days, struggle strive mentally but make my self good food.

    Time out for meditation, relaxation.

    Brain training look for programmes on TV that aid memory.  My quizzes.

    Use the day to instil in to yourself a routine.  

    My day starts off with Classic FM no boring news.  Look to the first meal of the day Breakfast make it enjoyable.

    Look at the website here. Or on line find feel good stories to heal and recovery.

    Have a look on TV anything feel good upbeat or educational all helps to be focused.

    I get myself down depressed and need to find sunshine..  Just have a selection of music that is up beat.

    Volunteering does not have to be involving going out. I cannot so volunteer here as community champion.  On the forum. Something to consider.

    Have a look on line anything there.    Create a diary to plan anything.  Mark down days that this the day to do certain tasks. Does it matter if you do not .  Do them another day. Cleaning and tidy up is a form of exercise but makes you feel good.

    Does not have to be strenuous .  Difficult one room at time.

    Remember small steps. Life is a journey I know a much used phrase but what is important is finding what you wish to do.  Not others who may cause you hurt and harm.  

    Please take care.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • April2018momApril2018mom Posts: 2,869 Member
    Have you tried photography? It is a good hobby to have. 
  • GettinOldeGettinOlde Member Posts: 495 Pioneering
    Wallowing in self-pitty and spending too much time at this keyboard. (feeling grumpy)
    Resident joker - not to be taken too seriously ¯\_(ツ)_/¯
  • brydiedwardsbrydiedwards Member Posts: 31 Courageous
    Hi @Earlysound ! Sorry to hear that you've had negative reactions to your situation in the past, people's ignorance can be so frustrating, but it's great that you don't feel you have to reveal more than you're comfortable with. Due to limited mobility/people's reactions when I'm in public, I spend a lot of time at home and have had trouble trying to fill it with things I enjoy. The few things I've found that really keep me occupied however are comedy podcasts (particularly Russell Brand on Radio X, or Off Menu), cooking, discovering new music, painting and other crafts like embroidery/knitting (except I can never keep at them), reading, and I'm not ashamed to say I watch a LOT of TV. I am also an Online Community Champion with Scope, as I wanted to find a volunteer role I could do online, and the hours are completely up to you so I recommend it :) 
  • April2018momApril2018mom Posts: 2,869 Member
    I love baking. I made vanilla cupcakes today with the kids. I’m hoping to start dancing lessons in the fall and am looking for a new tutor as well. I’m about to start a new job on Monday too. It’s in a office not far away. 
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Well done on your new job, @April2018mom and I hope it goes well for you.  :smiley:
    Winner of the Scope New Volunteer Award 2019.   :)
  • April2018momApril2018mom Posts: 2,869 Member
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @April2018mom   Best wishes in your new job .

    Hope everything works out and is successful.

    Take care.

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
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