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What now ?

barberannabarberanna Member Posts: 22 Courageous
edited May 2019 in Reasons to be cheerful
Ok this may seem like whinging and I know I’m a lot better of than some people and in the grand scale of life I shouldn’t complain but how do you move on from being so active and self sufficient, a career , having horses , an active family , friends and huge social life to 24/7 pain unable to work or even function ,unable to arrange any activity as you don’t know how your be from day to day , not having a purpose , losing friends , losing the basic ability to even able to bathe unaided in case you pass out . 
I don’t ask why me because why not but I do ask what now in life 
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  • GalDriverGalDriver Member Posts: 50 Courageous
    edited April 2019
    Good question...I'll let you know when I work it out. I swear lots (my "f*ck-it technique"), use my strong character/stubbornness to deal with pain and crockedness nowadays. Work so hard to keep/get as well as possible. I never ask the "why me?" either, if it's gonna be someone then why not?

    Pain, worthlessness, frustration, lack of control of emotions (SPMS) have me crying at least once per day so I just hang in there and wait for a better mood to appear. Still a daft irreverent bint but can't manage it to order now so wait for her to return. Music, humour, funny insanity all help so I use them when they are available to me. Good luck. x
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  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @barberanna, having a disability can be hard work and it unpredictable symptoms can be scary! How are you doing today?
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  • barberannabarberanna Member Posts: 22 Courageous
    Chloe_Scope said:
    Hi @barberanna, having a disability can be hard work and it unpredictable symptoms can be scary! How are you doing today?

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  • barberannabarberanna Member Posts: 22 Courageous
    Sorry hi Chloe , I’ve had a rough week , had a bad flare up and for some unknown reason my knee keeps popping out of place ( thankgod for Amazon I managed to get a knee support the same day ) 
    today I’m pottering around being slowly productive ( throwing out my many old pjs ) 
    hows you ? 
    What passes your days away ? 
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  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    That's okay! Sorry to hear you have had a rough week! Amazon can be very handy for stuff like that, I hope the supports are helping :)
    Sounds productive to me! You can never have too many PJ's though! I'm having a good day thanks :)
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  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    I’m sorry to hear that. Hopefully you’ll feel better soon. I find that icecream helps me on my bad days when I can’t control my moods or my family. 
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  • barberannabarberanna Member Posts: 22 Courageous
    April I’m desperately trying to stay on track with my diet . 
    Itll all be ok once the better weathers here ,I so need the sunshine 🌞 
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  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    What about exercising? Today after lunch I took both kids for a walk in the sunshine. A way of making sure you have some kind of exercise is to take a picnic lunch and some sporting equipment to a local park or going on a hiking trip.
    Or you could always see if you can do swimming or something. A relaxed game of tennis with a good friend also helps me relax. Do you live near a leisure centre or not? Often they are really good at activities for kids and families. My local leisure centre also runs a number of exercise classes.
    What do you enjoy doing?
    I used to work at a tennis club nearby. Set some goals. That way you will find it easier to keep on track with your exercise plan. Some gyms employ a personal trainer to motivate people.
    How much exercise do you currently do? Maybe you need to mix things up too. 


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  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Thank you for your advice @April2018mom! Exercise can be really beneficial. How about some gentle yoga or physio? For example, here is an article on yoga if you have chronic pain. Things like this could be a great starting point if you wanted to :)
    How are you feeling today @barberanna?
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  • barberannabarberanna Member Posts: 22 Courageous
    @April2018mom I used to be so active not with just work but I owned 3 horses down did Pilates and ran miles just to clear my head , I can just about now on a good day walk my dogs ( chihuahuas) up the road and back . But I have taken your advice and started tai chi . That can’t be as taxing on my joints and back can it then hopefully I can build on it or at least strengthen my body ready for my spinal op . Thank you Anna 
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  • wheeliegranwheeliegran Member Posts: 20 Connected
    @barberanna One thing I regret is trying to do as much as I could and really pushed myself to the point my arms, neck and shoulders literally became three quarters of my leg power. Do yourself a favour if you can get a small electric scooter and take your dogs on a nice long walk....go for a ride on your own, when it's safe to do so speed up and feel the wind in your face, not as good as riding but sure does help...it was my saviour after being active. You will have bad and good frame of mind days, once you find something that makes you feel good you will have less bad days. It doesn't take away your pain, the knowledge you can't do what you once could but it sure helps. I know I started that journey at 33 years old, I'm now almost 69 and it still hurts...then I look at my dogs, my wheels for legs and think yes I can take my dogs for walks, I can go to the shops albeit on good days as my muscles get very tired and painful quickly. Good luck to you I hope you're having a better day. Have you able to participate in riding for the disabled? 
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  • AilsAils Community champion Posts: 2,268 Disability Gamechanger
    Hi @barberanna and sorry to hear that things have been difficult for you lately.  I too have recently started Tai Chi and am finding it good for my pain and am really enjoying it.  So I hope you find the benefits of it too.  I find doing some arts & crafts lifts my spirits on days I can't get out.  Also I have recently become an online Community Champion on Scope so I would recommend that to anyone as it really is empowering and great chatting to so many lovely people on here.  I hope things get better for you.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
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  • barberannabarberanna Member Posts: 22 Courageous
    To all my lovely new friends ( I hope you don’t mind me calling you that ) I’ve taken on board all you’ve suggested and decided a hobby is exactly what I needed and am trying to up cycle old furniture and am debating on reupholstering my own dining room chairs . It’s something I know I need and can combine , the need fir a new set , saving money and a hobby at my own pace . Thank you for the inspiration. X
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  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    I recently got a office job. I also want to start adult art lessons. I love art. 
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  • AilsAils Community champion Posts: 2,268 Disability Gamechanger
    @barberanna, of course you can call us your friends as that is what we all aim to be here - friends of each other.  :smiley:   Reupholstering your dining room sounds like a great project/hobby to take on board and am sure it will keep you busy.  Good luck with it and you are very welcome.  Any time and please let us know how you get on with your dining room.  All the best.  x  :smile:

    @April2018mom, how is your new job going?  The adult art lessons sound great.  I hope you manage to start them.  :smiley:
    Winner of the Scope New Volunteer Award 2019.   :)
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  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Ails said:
    @barberanna, of course you can call us your friends as that is what we all aim to be here - friends of each other.  :smiley:   Reupholstering your dining room sounds like a great project/hobby to take on board and am sure it will keep you busy.  Good luck with it and you are very welcome.  Any time and please let us know how you get on with your dining room.  All the best.  x  :smile:

    @April2018mom, how is your new job going?  The adult art lessons sound great.  I hope you manage to start them.  :smiley:
    I love it so far. I heard back from another job today and I will start that in September. 
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  • AilsAils Community champion Posts: 2,268 Disability Gamechanger
    Oh fat @April2018mom!  Congrats!  What is your new job?  :smiley:
    Winner of the Scope New Volunteer Award 2019.   :)
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  • AilsAils Community champion Posts: 2,268 Disability Gamechanger
    That's meant to say fab, by the way!  :smiley:
    Winner of the Scope New Volunteer Award 2019.   :)
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  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Ails said:
    That's meant to say fab, by the way!  :smiley:
    I’ve always dreamed of being a tarot reader. Seriously though the job again is a office one. I start in September. 
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  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Of course we are friends @barberanna :)
    That sounds like a great hobby! You'll have to show us pictures if you want to :)

    That's great news about your job @April2018mom, you'll have to let us know how it goes!
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  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,940 Scope community team
    Great news @April2018mom. Congratulations! :smile:
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  • AilsAils Community champion Posts: 2,268 Disability Gamechanger
    I think doing tarot-reading would be fascinating @April2018mom.  I have been to see a couple and loved it!  Great news about your new office job in September.  I hope it goes well for you.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
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  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Hi, new to the group and only just spotted your post. Like you I went from being a busy active woman, with a great family and had a super job, to a wheelchair user.
    I had to learn how to pace myself, listen to my body and learn to relax...which was the hardest thing!

    I have a busy mind, so used it to do stuff like writing short stories, making rag dolls, quilting, jewelery, greetings cards. My current hobby is rock painting. Hope you are coping x
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  • barberannabarberanna Member Posts: 22 Courageous
    pollyanna1052 said:
    Hi, new to the group and only just spotted your post. Like you I went from being a busy active woman, with a great family and had a super job, to a wheelchair user.
    I had to learn how to pace myself, listen to my body and learn to relax...which was the hardest thing!

    I have a busy mind, so used it to do stuff like writing short stories, making rag dolls, quilting, jewelery, greetings cards. My current hobby is rock painting. Hope you are coping x

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  • barberannabarberanna Member Posts: 22 Courageous
    I wish I could be more like you ,I don’t seem to having any patience if it’s to slow . I need to be more kind to myself I think . Well done though you ... if you have a recipe to calm my mind pls help lol comment
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  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    barberanna said:
    I wish I could be more like you ,I don’t seem to having any patience if it’s to slow . I need to be more kind to myself I think . Well done though you ... if you have a recipe to calm my mind pls help lol comment
    Hi, how are doing now chick? I`ve started reading again and find it such an escape from worries...like awaiting a PIP decision. I like to read biographies and true stories. Do you like to read?x
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  • AilsAils Community champion Posts: 2,268 Disability Gamechanger
    Like @pollyanna1052, I enjoy reading too and find it very relaxing.  I also find that doing some arts and crafts gives me peace of mind and transports me into a calmer place if I am feeling stressed or down.  Do you have any hobbies or interests @barberanna?  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
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  • dolfrogdolfrog Member Posts: 434 Pioneering
    barberanna said:
    Ok this may seem like whinging and I know I’m a lot better of than some people and in the grand scale of life I shouldn’t complain but how do you move on from being so active and self sufficient, a career , having horses , an active family , friends and huge social life to 24/7 pain unable to work or even function ,unable to arrange any activity as you don’t know how your be from day to day , not having a purpose , losing friends , losing the basic ability to even able to bathe unaided in case you pass out . 
    I don’t ask why me because why not but I do ask what now in life 
    Part of the problem is that when we are growing up, and young adults there is little explaination of the possible issues we may experience as we become older, and our bodies and brains become less able to perform as when we were younger. 
    I have a life long disability - Auditory Processing Disorder - which for me and my family is a genetic issue, however many adults can acquire similar issues due to brain injury, stroke, or the various types of dementia.
    So although I have been living with my disability all of my life, for some one to acquire the same problems which ca be part of Aphasia, and Agnosia and many other communication disabilities, must be almost unexplainable and not part of life as previously experienced. 
    Hopefully you will find ways of coping and develop alternative hobbies and interests that best fit your new circumstances. 
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  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @barberanna, it can be incredibly difficult to adjust to life when it is different to those around us. 

    How are you doing today?
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