Hi, my name is susanlily! — Scope | Disability forum
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Hi, my name is susanlily!

susanlily Member Posts: 6 Listener
After a restless night and worries about isolation and lonliness i decided to have a quick look online and stumbled across Scope. What i find really worrisome is that nobody within the community as a whole but particularly within the health system seems to care about those of us who have disabilities and suffer (and i mean suffer) the effects of isolation and lonliness. 

I have had Multiple Sclerosis for nearly 30 years and yet im still under 50. I live in a small but affluent community and am therefore totally invisible to society. Apart from carers that i have to pay for myself last January through to March i only ever went out on 'trips' to the doctors, dentist, hospital etc. Three months with no social interaction unless i count the carers i pay. I have since met a disabled member of the clergy who agrees with me that as non-pension age disabled people we are invisible and she was just grateful for her faith, her job and her husband. I may have the first of thise things but neither of the latter two.

My normally positive attitude has been whittled away by social stigmatism, ignorance and assumption that all i have to do is apply myself and 'go out there and get the help you need'. My experience is there is no help, no social clubs (it was put to the local stroke club that perhaps i could join in but they declined). The nearest MS society centre is only 13 miles away but a £60 round taxi trip as it is on no bus route.  One has to weigh up the benefits of such an expense. 

i hate the negative person i have become. I no longer recognise myself and i desperatley do not want another new year of isolation. I am hoping that joining this group may help.


  • steve51
    steve51 Member Posts: 7,154 Disability Gamechanger
    Hi @susanlily

    It’s great to meet you today!!

    I’m very very sorry to hear about your current situation.

    Please please let me know if there’s anything that I can help you with???? 
  • CockneyRebel
    CockneyRebel Member Posts: 5,217 Disability Gamechanger
    Hi susanlily and welcome

    I hope our community will help a little, we are always here to listen and support each other in any way we can.
    Please join in and together we will not be alone

    Be all you can be, make  every day count. Namaste
  • susanlily
    susanlily Member Posts: 6 Listener
    And suddenly just like that I have two messages of kindness. Thank you Steve51 and CockneyRebel. A lifeline through the ice, rain, snow and fatigue that keep me inside my gilded cage. I wore myself out this morning just starting to tidy my room. So much so that ive been asleep all afternoon. To be positive at least i tidied some part of it. Hopefully tomorrow i can attack another small part. 

    Roll on summer, no that's far too long, roll on the first buds, the birds singing and the sunshine on my face.
  • CockneyRebel
    CockneyRebel Member Posts: 5,217 Disability Gamechanger
    Even now the daylight hours  are lengthening. But there is beauty in nature at all times of year. The pattern of a snow flake or frost on spiders web, dramatic clouds racing across the sky with ever changing pictures if we care to look. Soon the snowdrops will nod to the morning sun. When the first buds of spring haze the trees I will be hoping my newly planted bluebell wood will come alive

    Be all you can be, make  every day count. Namaste
  • Neil2017
    Neil2017 Member Posts: 155 Courageous
    Hi @susanlily

    Welcome to the Scope community.

    I am registered blind myself although have some very usable sight. I totally agree with many of your comments on isolation and loneliness, although there are pockets of positivity out there in trying to improve the situation.

    You say about “working age” people losing out as you mention not being 50 yet. In my opinion services are targeted at pensioners and children or possibly young adults going through further and higher education. Those that miss out the most are those in the 30 to 50ish age range. 

    I also agree that that if you live as a single person and are not able to drive a motor vehicle, if public transport is poor or non existent it can cost you a lot for taxis. If you are not working or on low income it can be a large chunk of money going on this which you may not be able to afford.

    And I think it was bad that you were turned away from one service .

    What can you do apart from using online facilities like this? Move closer to where some services are. Butthen for many disabled people that means adjusting to both a new home and possibly a new environment outside the home on a day-to/day basis.

    So perhaps the alternative is befriending services in which people come to you or telephone services, but even these have there drawbacks.

    I even notice this last year that more and more smaller communities are losing so much in amenities. In today’s national newspapers it mentions the closure of 800 bank branches. Post offices and local libraries are closed or have very limited opening times. Even rural pubs get turned to flats. Cuts on local services are also not good as more services are either disappearing or require s charge and once they were fully subsidised.

    Roll on driverless cars. Although will we be able to afford them?

    Sorry about my long rant. Hopefully you find some help and support here.

    all the best
  • susanlily
    susanlily Member Posts: 6 Listener
    Thank you Neil. How true your words ring, do ŷou live in the same town?! I am very fortuanate to have my own house but unfortuante to have lost both parents, i would much rather have them alive and well and me rent. I scour online for 'how to beat the winter blues' or 'how to feel more energised' and always put in the disability factor yet its always the same. Exercise, get out more, join a club, take up a new sports hobby.arghhhhhhh 
    Another issue which i dont suppose is really talked about is paying for private care in an area where it is almost impossible to get carers. My carer is on holiday, a friend has helped out this week, my relations are suddenly too busy and therefore i have to manage on my own for the next eight days. My daughter would go wild if she knew (she lives 140 miles away) but there simply is no other option. The nhs care-coordinator cant help and i no longer have a social worker (because i pay for care they took me off their books). Im sure left to the mercy if the system it is much, much worse but its not so rosey even  on the other side. Its a national disgrace how this country treats its most vulnerable citizens be they young, old or inbetween.
  • Neil2017
    Neil2017 Member Posts: 155 Courageous
    Hi @susanlily
    Thanks for your reply. No I don’t live in the same town as you as far as I know! But good to see that someone agrees with me. It is a disgrace when governments of all political parties over the years have known there would be a boom in elderly people and therefore much more demand on NHS, social services, care homes and care workers, etc. Plus in addition to this an increase in disabled people living longer or being sustained by medication and some operations. 
    At least the charity sector tried to do something to fill some of the gap. But even then it can be a post code lottery depending on where you live, what your disability is or even what age range you fall into.
  • CockneyRebel
    CockneyRebel Member Posts: 5,217 Disability Gamechanger
    Hi susanlily

    Many people suffer "the winter blues " or lack of energy during the winter months.

    Often this is caused by the lack of sunshine, hence being told to get outside in the sun.
    The name for this is Seasonally Affected Disorder or SAD. Some relief can be had from sitting with a light box containing a daylight bulb to top up your "Sun".

    It, like many therapies, is not an instant cure. I use one on the very grey days we get and I have difficulty getting going.

    This is something you may want to discuss with your GP or do your own research if you thinkit might help

    Be all you can be, make  every day count. Namaste


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