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Living Alone With Disability

Discussion in 'Disability Forum' started by lin1254, Feb 11, 2011.

  1. lin1254
    Breezy

    lin1254 Member

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    *Living alone with a disability thread added*

    I wasn't sure if listing the disability meant to do it in the title or not :) lol

    I am new here and it feels good to be here. I just wondered it there might already be a forum
    for folk's who are disabled for whatever reason and living alone. I'm beginning to realize, (I'm
    not too slow [​IMG] lol) that it has presented for me a whole set of problems that I could use some
    information about and perhaps sharing with others about how I have been managing and learning
    from others how they have been managing could help a lot. (Slight understatement...[​IMG] I do that
    a lot lol--understatement i mean) warmly, lin
  2. susanfoster
    Chatty

    susanfoster Well-Known Member

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    hi lin am sue i have cfs or me i have had this illness since 1986 but not all the time i have been well 2times before this time ,nearly 4 years and this time i cant go out i can only pace i am like you i live on my own i have a daughter who is married and she is a nurse,its not easy when you live a lone but being here should help you a lot ,cos were all in the same boat ,i run a self help group by phone or email i no a lot about it i read a lot books sue
  3. lin1254
    Breezy

    lin1254 Member

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    Hi Sue, I was looking for books on living alone with disabilities to no avail.
    I also have chronic fatigue syndrome. Is your group about dealing with
    cfs liviing alone? Might you be able to point me toward a good book about
    living alone with disablities? Thank you for responding to my post. I appreciate
    it. warmly, li
  4. Calsie
    Breezy

    Calsie Managing Site Manageress

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    Hi Lin,

    Sorry don't think I can help but didn't want to read and not respond.

    I will put my thinking cap on though and get back to you :)
  5. susanfoster
    Chatty

    susanfoster Well-Known Member

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    am sorry i dont no any books about liveing alone but i have a very good book which helped me a lot ,but a man as borrowed it i will find out what they call it ,it all so tells you about true stories and people who have got better with our illness ,i no how your feeling ,i set up the group because i went through hell this time i had it the dr said there was nothing wrong with me for 2 years ,i kept being out ove breath and he said it was astma and told my family there was nothing wrong with me i got that bad i was too weak to walk and my family belived the dr ,so i had big argument with my only daughter,and family because they kept saying its all in my head i was left with no one i couldent walk talk and had no shopping in and had no one get me any ,so i went through hell ,on my own so when i was told i had cfs i put a big rite up in thee paper and told all about the drs and family ,and i dident want no one to go through what i went through ,and i had letters going out to every gp telling them to send people to my group if they had cfs i run a help line when well enougth and am on the nhs at rotherham i have got to know a lot about our illness through books and it has helped me a lot if i can help you with any thing i will sue
  6. susanfoster
    Chatty

    susanfoster Well-Known Member

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    lin how bad is the cfs can you manage day to day or are you too ill to do any thing ,you might be able to get help if you live a lone and cant do a lot were are you from if you dont mind me asking
  7. lin1254
    Breezy

    lin1254 Member

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    Thank you for the responses. Sue, I'm sorry you had such a horrible time of it. I'm so glad
    you were able to start your group and that was so good that you asked other gps to send
    people with cfs to your group. You have done a wonderful service to the people who were
    not being served.
    I think maybe I didn't write the first post the way I meant it to sound. I do that sometimes unless
    when I'm writing I do a lot of rereads over time and a lot of editing.
    What I meant to ask was, is there a thread "here" for folk's who live alone with one or more of these disabilities.
    I thoght if there wasn't, if there were even a few people on this forum who were dealing with
    that, perhaps a seperate discussion thread could be started for those
    of us who are trying to deal with these things without a spouse or partner or other immediately available
    help. I may not be saying it correctly again but maybe i'm getting closer lol.

    My cfs is on and off and i'm ok enough with it. I was thinking more generally about any of the various
    disabilities where people were living alone. It seems as tho regardless of what the disability is, that
    there are a bunch of problems that living alone with them presents. It never occured to
    me before to even look for a book on the subject--but then I havent' really wanted to think of myself in terms
    of "disabled" either. Like I said, slow sometimes. :). I just never liked the word. And I didn't want people
    to see me thru that filter. Not accepting that I'm disabled has presented countless problems that I
    probably would not have had had I just been able to accept it years ago. I even tried to look for a book on
    learning to accept your disablilities or accepting that you are disabled with no success. My main learning
    comes thru books. We all learn differently and that is my way to best learn things.
  8. susanfoster
    Chatty

    susanfoster Well-Known Member

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  9. susanfoster
    Chatty

    susanfoster Well-Known Member

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    hi lin nice to hear from you ,and i no what you mean ,about trying to keeping going and thinking that your ok ,i was the same i am new to this site too and i am only just getting to no how it all works ,am like you i no every thing througth reading when am able i allways think it helps alot then when ,people dont no whats happening to them and they dont no wich way to turn i can give them a bit ove support,am sorry a bout my spelling being not very good ,i have asked my freind in the group if the have finished with my book and soon as i get it back i will let you no the name ove the book it helped me so much it tell you every thing you need to no and do with our illness,and the other book he as is storys about people who have got well from cfs if you are on face book and go on my page susan foster you will find a site what you can click on for cfs it will come up on my page its a very good site sue
  10. Calsie
    Breezy

    Calsie Managing Site Manageress

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    Hi Lin,

    I think its a good idea. You could start the thread off or i could start it for you. Sorry i misunderstood your first post :)
  11. lin1254
    Breezy

    lin1254 Member

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    Thank you Sue for the information. I will try to go on Facebook and find the page and link.
    Your spelling is fine :).

    Calsie, I'd be happy to start a thread. Being new, I need to ask, does it matter where I put it? :)
    If one place would be better than another if you might point me toward it I will begin a thread there.
    Thank you for your response. I appreciate it.
  12. Calsie
    Breezy

    Calsie Managing Site Manageress

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    Hi Lin,

    No need to ask, we want the forum to be adapted to suit our users needs.
    You can put it anywhere you like, disability forum probably the best one? :)
  13. lin1254
    Breezy

    lin1254 Member

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    Thanks Calsie, hope your day is good :)
  14. lin1254
    Breezy

    lin1254 Member

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    This is for anyone but especially those of us who are living alone with disability.
    This presents some problems that can sometimes seem insurmountable.
    What do you do if you have agoraphobia and need to go to the grocery store?
    What about the lonliness of living alone with "any" disability? Sometimes it
    can even be about getting around. Are there days when you can't get up to get
    something to eat and there is noone there to bring you something? I, for one, have
    resorted to a can opener and cans around my bed and the gallon water jugs. And
    of course paper cups and plastic utensils and a garbage bag. I'm an environmentalist
    so it's difficult when each week I leave the grocery store with so many disposable
    things, paper plates, paper bowls, plastic utensils, paper cups. But, there are times
    when I have no choice. For me, I've noticed that the tv has become very very important
    as well as my computer.

    Anyway, this is just a starting post. If there are others living alone with disability here
    I hope you will come and share some of the ways you cope with that.
    Warmly, Lin

    PS: I am an alphabet soup: mcs, cfs, ptsd, copd. also depression, anxiety, panic attacks,
    social phobia and knock wood no agoraphobia right now but 20 years with it on and off
  15. Orli
    Hungover

    Orli Well-Known Member

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    I live alone [although I do have a dog] and am agoraphobic. I am also a full-time electric wheelchair user and there are many days when I feel that I really can't get out of bed - which in itself is difficult. But I have to get up because of my dog, as she needs to go out. Luckily there is a small "corner shop" type store just across the road and as long as I can see my home from there I can just about cope with going across for basic needs.

    On the rare occasion I need to stock up with things that aren't sold across the road I have to go to the nearest large supermarket, which is about 10-15 mins by taxi. The problem with that is that it needs planning in advance as I have to arrange for my dog to be collected for daycare, then when she has been picked up I have to phone for a taxi to come out from town - and as I am not good with many people around all the timing has to work around the time I know that the shopping centre won't have many people there. Usually around 11am is a good time for that.

    As I have both a very large fridge/freezer and a separate large upright freezer, I find that doing a major "shop" at the supermarket [I get it delivered] means that the rare occasion is frequently only once a year!

    It's very difficult though, especially as I am not young any more and severely physically disabled. My mind might think it is still 29 but you need to add 40 years to that!

    [​IMG]
  16. lin1254
    Breezy

    lin1254 Member

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    My mind has a similiar temperment :). It thinks it is 30. I used to wonder if I should try
    to do something about that but after much consideration, I decided to allow my mind to
    be the age it want to be. :)

    I noticed the planning in your post.[​IMG]
    I've noticed that one of the main things that others have a problem understanding is all
    the planning I need to do to do the simpliest thing. I have a doctor appointment. I know
    that I need to plan for having two days before and two days afterward free of ANYTHING
    that might
    be anxiety-producing. There is going to be [​IMG]aniticipatory anxiety before and my body is
    going to be exhausted for two days afterwards I guess from all those chemicals released
    over the past three days. It used to be a week of anticipatory anxiety before the doctor
    appointment and a week in bed [​IMG]recuperating after but now it's down to 1 1/2 to 2 days so
    at least its going in the right direction lol.

    Well, it was fun adding those little Faces to this post and sure does give some umph! to what
    i wrote. lol (that one little guy says Cold but it just reminds me of how i feel a great deal of the
    time so i used him) :)
  17. Orli
    Hungover

    Orli Well-Known Member

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    Lin, may I please ask why you use shortish sentences instead of going across the space of the message box? Or maybe you are using one of the clever mobile phones from which you have to keep hitting return.

    Planning for me also depends on the weather, at least during the winter, as neither my electric chair nor my little foldable scooter [which fits into the boot of a taxi] can be used if it's raining or threatening to rain. In the summer it is hot, so unless I am out reasonably early, and 10.30am is normally the earliest I can get out, assuming that my small dog is collected on time, it is too much for me to go out. Just buzzing across the road is one thing, but going off the Moshav? Impossible.

    It isn't that my life and timing revolves around her - my Little One who died just over a year ago could be left for five, six or even more hours, but Pereg can't because she gets very anxious if I am away from her for more than just half an hour. But I have to plan things and phone the dog Pension beforehand to ask for her to be collected at such and such a time, on such and such a day, and what do I do if either he is late collecting her or by then I just can't cope with going out?

    Not terribly important really as I usually ask him to collect her for daycare maybe once a month, just so that she doesn't fret if an emergency arises and she has to go there, and she isn't shut in a kennel/run by herself, but he lets her run free with his own dogs - so much space, and I know she is happy there. But I hate being home when she isn't here and I'm lucky that there is such a place where she can go for daycare. Or, more like it, for a fun day out!

    [​IMG]
  18. lin1254
    Breezy

    lin1254 Member

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    :) what a sweet dog. i love dogs. i used to be more of a cat person but
    when i moved here i got acquainted with my parents dog and for many
    years we were best friends. he also passed last year but will always be
    in my heart.

    we used to have a good place to leave our cats, my husband and I, when we
    went on holiday. it sures means a lot to know they are in a good place that
    they enjoy.

    ps: i tend to make the right margin closer because it is easier for me to read
    the post that way
  19. Orli
    Hungover

    Orli Well-Known Member

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    Thanks for the explanation about the right hand margin lin - I'm afraid that I just type until the next line comes up automatically, but I do choose the Arial Font in size 4 as it is easier for me to read both the Font and the larger size.

    That isn't my dog - just a picture I found. Pereg doesn't lie on her back like that, although my little one used to be forever in what I called her "come and get me" position!
  20. lin1254
    Breezy

    lin1254 Member

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    lol

    I like your font. It is very clear to read. :)

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