Disabled people
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are we living life?

itsafeethingitsafeething Member Posts: 17 Connected
edited March 2018 in Disabled people
ive been up since 2am, listening to muly hubby snoring, ive tossed and turned, checked my emails , my bow buisness page, also facebook,
 once all that is done, its half past 2.
So just laying there in the dark,  thinking how life has drastically changed, from working 15h shifts a day in a care home. To not being able most days getting out of bed. Not being able to walk my kids to and from school, feeling  like a failure that your letting them down, my hubby does absolutely everything, hes 50. He never moans about all the things he does. Sometimes i think to my self, would they be better off with out me, So they can get on with life, with out me holding them back. Is this just me thinking this . Sorry should have said am disabled.  i have loads of health issues, very abused life, and lots of mental health issues.

Replies

  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello Fiona @itsafeething
    and wow, that's some big question. I suspect it would take me a lot of time to try to answer it properly. I'm going to respond, but it will be a personal response, nothing to do with Scope or my membership/volunteering with it.
    Can you bear with me, and I will get back to you later when I've had time to think this through ?
    Warmest best wishes to you,
    Richard
  • GeoarkGeoark Member, Scope Volunteer Posts: 1,373 Disability Gamechanger
    @itsafeething welcome to the community.

    Sometimes i think to my self, would they be better off with out me, So they can get on with life, with out me holding them back.

    No it is not just you who feel like this. 

    All I know is that very few of us live in complete isolation to anyone else around us or have an effect on other lives. Sometimes it is not always clear if the effect is positive or negative. Sometimes we can have a huge effect on someone else without ever realy knowing or realising.

    You mention that your two oldest are adopted, you have already had a huge impact on their lives. By continuing to love them you continue to have a possitive impact on their lives. If you chose to suddenly leave them and create a hole in their lives how would you continue to positively impact on them?  

    It is easy at times, and understandable, to become too focussed on the negative in our lives and forget the positives.

    You might appreciate this post in Huffington Post: https://www.huffingtonpost.com/2014/03/18/serenity-prayer-wisdom_n_4965139.html

    There is also a fantastic discussion by one of our members @mossycow
    https://community.scope.org.uk/discussion/31204/disabled-parents-doing-things-differently-but-the-love-is-the-same

    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!

  • mossycowmossycow Member Posts: 495 Pioneering
    Hi @itsafeething (would LOVE to know where your name came from..)

    Gosh your post sounds so familiar  I feel I can relate. 6 years ago I was working all hours in my career of choice, teaching by day, mummy in by night. I look back and it's like it was a different person almost. I feel very similar. I often wonder... What's the point of ANYTHING surviving let alone what's the point of my life?! 

    You don't say how long you've been disabled? (hope you don't mind this terminology) but  I discovered yesterday that I'm 5 years in... And it DOES get better. There are difficult times but as I almost kind of collect good stuff in the bank... When I'm having a bad patch I now know that good things will come back if that makes sense. And you get better at coping with stuff. 

    E. G. This morning have woken and the respiratory infection/virus I knew I'd catch of my daughter's s coughing friend has come to fruit

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • mossycowmossycow Member Posts: 495 Pioneering
    Sorry, got cut off. 

    What I was saying was that although I'm ill today, I fell much better equipped and supported to manage. 

    I'm in bed, as I know that investing rest will pay off in the near future... My husband has helped pack bag of food, bag of medication, phone, TV remote, tissues etc... My daughter is now older and in the habit of getting herself ready etc. . 

    We have outside support set up from Young carers. (who I would highly recommend. They are there as much or as little as you need no matter how your family is. I didn't access support for ages as I was embarrassed.... Didn't feel it needed it enough..... But I have learnt that they make a big difference in supporting my child as she supports me.) also good relationship with gp, Emily's school, family, friends and here at Scope too. It's taken a few years to get this together and it really does help. 

    And I know it's OK to ask for help and be in need cos when I have better days I help others in need. Like today my husband is helping me... Yesterday he came in during a busy day to food, stuff done, child looked after etc. Its all a team effort.

    It sounds from your post like you are such a caring person who wants to help others, I'd like to think I'm similar. It's a hard transition going from the person who helps, to the person who needs help. 

    But there are many many people and creatures on our planet who live by the grace of the help and care of others, all valuable and all doing much more than merely existing. 

    Being truly alive I feel means connections with others and your first sentence shows that you are a spouse, business and Facebook friends, a mother and a carer. That doesn't change just because you are less able to do stuff. Those connections remain. 

    The truth is, you've been dealt this horrible **** of disability and its hard. The challenges you thought you would face... Have been totally changed. You never know what is round the corner and that's quite scary. There will be hard times.  But there's also good stuff coming! And the more you live as a person with these challenges, the more you can collect the good bits so during those 2am times you can remember good stuff too. 

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • mossycowmossycow Member Posts: 495 Pioneering
    On a purely practical note too  prepare for these 2am low points. 

    I make sure I have snack (I like oatcakes and banana), drink, medication. We also now have a micrwave and kettle in bedroom so heat packs, warm drinks etc much easier to access. 

    But also, stuff for my mental health. Facebook is OK... But sometimes looking at the happy looking pictures of friends doing stuff you can't I'd a bit depressing.... Though it's lovely to keep in touch. I have lots of podcasts on phone and lots of it is very funny stuff and stuff I find helps. E. G. The BBC ouch podcasts are hillarious but also quite life affirming as a disabled person.

    So if I wake up, with pain or whatever, feeling alone and yes  like you said like I'm just existing.... I can sort out my physical needs., eat, drink, have pain relief and laugh my head off and feel better. 

    Again  the more you accept how life has become and prepare for it... You can kick it in the nuts

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • mossycowmossycow Member Posts: 495 Pioneering
    Also, if you feel able to. Sounds like you have a lot of life experiences to pass on. Perhaps you might use this forum to vent and get advice yourself but also, sounds like you could really help others by responding to and chatting to others too. Perhaps you can't physically go out and do 15 hour shifts as a carer but you sound like the type of person who will always have a positive effect on others xx



    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • itsafeethingitsafeething Member Posts: 17 Connected
    edited March 2018
    Wow @mossycow
    thank you for you kind words, my head is all over the place. Am weaning off my mental health tablets, so they can put me on other ones, I went Down 200mg every night.  Am a wreak. I’m so glad of this forum! And people like you.  Touched my heartXxx

    @Geoark thank you, what you said I totally got it, 


    Oh missy cow my name came from I get called fee, and it’s bow the name of my bow page, itsafeething. With Fiona Allan lol

  • gillian29gillian29 Member Posts: 36 Courageous
    Hi @itsafeething, your not on your own.i bet a lot of us thinks family would be better of without us.Like you I worked for 35 years as a career,Ii worked 48 hours a week,and I loved my job.Then i  had my son Jamie,and then I started with alsorts of health issues but
    still managed to work part time.My health deteriorated in the last few years and was unable to work,I kept asking why me,what have I done to deserve all this.Ive looked after my son for 15 years and now he’s looking after me,he should be out with his friends having fun.You get good days when you can manage to do a few things,and bad days usually follow a terrible night lack of sleep.Im learning to live with my health issues and I no I won’t get better and I won’t be going back to work.You just have to take one day at a time,if you’re having a bad day,tomorrow’s a new day and you might feel a lot better.If I’m having a good day I tend to do to much then the next 1/2 days I’m in that much pain,and I’ve just got used to that now.There is loads of things I can’t do so now I try to forget about those and concentrate on the things I can do.I keep in touch with all my school friends, and other friends on Facebook,some days it just upsets me seeing what other people can do,so I might not go on it for a few days.As I’ve got older and my disability worse,family and friends have become so important to me.Try and think about the positives in your life and try not to dwell on the negatives to much.Glad you e got your husband to help you,if you weren’t there he probably go to pieces,you’ll looked after your husband no it’s his turn.I just can’t get my head around been a career all those years now I need caring for,I’ll get there eventually.Dont overdo things,and glad you’ve found scope,they are very help full in all ways 
    gillian
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