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We want to hear from you: please tell us about your experience of the online community.

Feeling lonely/isolated

Karen72

Hi everyone, my name is Karen, I have a mobility problem so I rely on a wheelchair when I'm out and about. I've been looking to find a local support group which is not proving easy - either I don't have the condition the problem is for or I'm not local enough or old enough. - Nightmare.
I was diagnosed with Hydromyelia a few years ago but my neurologist doesn't think this is causing my other problems such as speech problem and I am unable to move my left leg at all - not paralysed thank heaves but wont move on it's own. I do have to rely on people to come with me when I go out but it would be nice to find somewhere that would just let me come and talk to other people in the same boat.
I just feel lonely as my friends seem to have abandoned me.

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Comments

Dotty123

Me to I’m not best going out I can’t use my hands and fall sometimes when out esa been nightmare still waiting for mr then be tribunal library best place where you live

Ami2301

Hi @Karen72 sorry to hear this. Have you considered creating your own support group?

Dotty123

Hey that is good idea you should to chat cuppa needs

Roddy

From a male's point of view, I also have the same barriers as I don't have any friends or visitors. :-( I don't know the area either but what I know about it there's nothing really here in terms of support groups.

Misscleo

Me too.
Lost a few good friends cos of my illness.
Mostly they dont want to wait for me cos i cant move at their speed

Dotty123

We should make loners group

Roddy

Dotty123 said:

We should make loners group

Hi @Dotty123

I did try to on here a few weeks ago, but due to online safety etc. Scope cannot allow it :-( Such a system could be open to abuse.

Karen72

Thanks for the feedback peeps. I'm glad to know that I am not the only one that feels like that. Shame about the "Loners group" but I guess it makes sense.

I've found a website that deals with brain and spine problems so hoping that they may offer advice on my practical problems but as for still being lonely - not sure that will resolve overnight.

kimmy62

Hi I got same problem never felt so alone in my life before it's hard and bringing me right down.

Dotty123

Think we’re all feeling that should be groups about for us all

Antonia_Alumni

Hi @Karen72 thank you for sharing this with us. Have you been in touch with your GP or local council to see if there's any support groups available to you? The Brain and Spine Foundation have a free helpline, you can call them on 0808 808 1000. Helpline hours are Monday to Thursday: 9am to 4pm and Fridays: 9am to 1pm, or you email them on helpline team: helpline@brainandspine.org.uk or use our enquiry form.

I can understand how you feel, I am happy to see you have joined us.

Please keep us updated.

Antonia_Alumni

Hi @kimmy62 thank you for sharing this with us. How are you doing today? I am sorry to hear you're feeling down. Would you like to tell us a bit more please?

kimmy62

Hi I am a nervous of posting anything. But I don't go anywhere I've had an horrendous few years and I just feel I exist. I wake up some mornings and think here we go again and don't understand what my purpose is. I'm in the middle of an appeal with pip because I've lost it and without the car cant get anywhere. I got family and a few friends but just don't want to be a burden. I've just got a support worker so hopefully things might improve.

Gill104

Hi I’m new and have just posted exactly the same subject...
yes me too ☹️

Dotty123

I’m sim same but I get out walk round shops library not much I can do I can’t use my hands but peaple help put stuff in bag chat to you get cuppa lady always fills my cup then sticks it to table with straw someone will chat and moan but it’s nice to hear

Antonia_Alumni

Hi @kimmy62 thank you for sharing this with us. I am sorry to heat this. Have you been in touch with your GP for emotional support? We have some information on appealing and keeping friends when life changes that you may find useful. Happy to hear you have a support worker, please keep us updated on how it goes.

Karen72

Antonia_Alumni

Hi @Karen72 I am sorry to hear your GP has not being helpful, maybe you can ask to see a different Doctor. There's IAPT (free talking therapy) where you can refer yourself and get some support. You can find one in your area here. Brilliant, yes please keep us updated.