Getting to know other people with disabilities

Hugo_Lamb

Hi all, 

Just a quick bit of background about me.  I had a series of events while at university (4 years ago) which lead me to having over 50 surgeries and has left me with with variable vision.  I've also got hypermobility (EDS) which gives me chronic pain.  I work full time for the civil service (in London) and enjoy running and playing music.  But I don't know anyone who has a disability (or at least is prepared to talk about it) and I feel that I'd really benefit from getting to know some people and sharing experiences, so please do say hello if you'd be up for a chat!  I'd be especially keen to hear about your experiences of socialising and dating with your disability, as this has been what I have really struggled with personally since I became disabled.  

Cher_Alumni

Hi @Hugo_Lamb and welcome to our online community!  You have definitely come to the right place to meet disabled people, share experiences and have a natter.  

A good place to start might be the Coffee Lounge which is a relaxed spot to talk about anything and everything with our other members.  After that the Dating and Relationships board is where we have discussions specifically around all things dating so that could be helpful to you.

I like running and playing music too! Who are your favourite singers?

Hugo_Lamb

Thanks Cher!  And lots of obscure singers from indie bands alas, but I am friends with the Kooks singer if you know them   How about yourself?  

Cher_Alumni

Oooh connections eh! I do know them, Naïve was a brilliant song  

I have varied taste from 90's dance, to 80's love ballads to the Prodigy!  I have a real weak spot for Will Young though and have seen him in concert six times 

Tori_Scope

Hi @Hugo_Lamb! I'm glad to see you've already met Cherylyn. Just to let you know, I've moved your post into the Dating and Relationships category so that more people will be able to see and respond to your discussion. 

(I'm also fangirling over the fact you know the lead singer from The Kooks! So cool!)

steve51

Hi @Hugo_Lamb

Good Afternoon & Welcome it’s great to meet you today.

I am one of the Community Champion’s here at Scope.

Yes you have come to the right place to meet many many new friends.

@steve51

janer1967

Hi @Hugo_Lamb Welcome to the community glad you have joined us here.

I know how difficult it can be meeting people once you become disabled but it isn't impossible I met someone a year ago now and this was on a dating app but it did take a long time and not always the best experience as a lot of fake profiles and scammers etc

I wish you luck and hope you find what you are looking for you will at least find people to chat with and make friends here

OverlyAnxious

Hugo_Lamb said:

...but I am friends with the Kooks singer if you know them   

Was just wondering who wouldn't have heard of The Kooks...but I guess there must be a whole generation of youths that don't now!  Keep forgetting how long it's been since I was at school! 

Tori_Scope

@OverlyAnxious I did a quick search and saw that Naive came out in 2006, which means that people who were born when it came out are now 14! I'm not even old, but that makes me feel old

Hugo_Lamb

Thanks for the replies everyone!  Wasn't expecting so many responses!  I look forward to getting to know lots of you.  

And Tori I know exactly what you mean, I remember seeing them in 2007!  They're very much a 00s band!  It's good to see that lots of you have a good taste in music  

Tori_Scope

We're a friendly bunch @Hugo_Lamb! 

Ah the golden days of noughties indie rock...

Francis_theythem

Hi! I'm Francis, I struggle with connecting with anyone and everyone except through disability due to being housebound >< I have ME, PoTS and also possible EDS. I'm studying philosophy part-time (and mostly from my bed). It's been hard to meet friends, but because I'm lgbtq+ I found some people through a lgbtq+ forum at my uni. Most of them have some kind of mental/physical health difficulty so they understand. Ee skype/message and they always wait for me if I can't talk for a long time. I don't have any experiences of dating though, because asexual. 

Tori_Scope

Hi @Francis_theythem! I'm really glad that you've been able to meet some people through the LGBTQ+ forum, that sounds really positive It looks like you've been on the community for a few weeks, but I'd like to nudge you towards the Coffee Lounge as well as the people on there are really chatty and I'm sure you could find people with similar interests! What kind of thing do you enjoy doing?

Francis_theythem

@Tori_Scope The thing is...I struggle with that. I got really ill during my second term of uni. Getting through uni is the only thing on my mind and I have very little else because ME took almost everything away from me. I used to be really high functioning - I did classical music and irish dance. Obviously I can't do that anymore so I guess without my degree it's like I have nothing

Tori_Scope

Hey @Francis_theythem

I'm sorry to hear you got more ill in your second term I've just graduated so I know how hard getting through university can be, and I didn't have to go through it with ME, POTS, or EDS, so I can't imagine how difficult that must be for you at times. 

I suppose I'd just like to reassure you that I think you're doing a great job, and that your level of functioning, especially as you perceive it, doesn't affect your worth as a person. It must be hard not being able to do the things you used to enjoy, but perhaps you could try and find some additional hobbies that you feel more able to do at the moment? Is there anything else you like to do? 

Also, are you able to access any support that your university has to offer? You deserve to get the additional support you need in order to succeed

Francis_theythem

@Tori_Scope I'm lucky, because I have a really understanding university. They provide funding for academic support workers when I need to be on campus for classes and my student support plan gives me allowances. It is pretty tough, especially going through diagnoses investigations, council stuff for carers and all the normal housing things at once. I'll be relieved when I graduate but also kind lost on what to do next. I was thinking about going into occupational therapy but illness, so I think that's just a dream ><

Hm I do have a colouring book and there are also these things that are foil carving, where they give you lines to scratch away to make an animal. I was thinking about maybe starting string art but it's difficult to try new things because since I got ill usually when I make plans or try things I never end up being able to carry them out, so it's hard. My functional level is getting a little better though so I was looking for a really easy low level craft and I came across string art

amsofly

Hi @Hugo_Lamb I believe you're in the right place and hope you'll find that which you're looking for
 Best of luck.

Tori_Scope

Hi @Francis_theythem

I'm really pleased that the university has been so understanding. It must be stressful having everything happen at once though.

There's nothing wrong with having a dream! Do you know what the path is for getting into OT? Do you have to do a Masters?

Ooh I just looked up foil carving, seems fun! I can appreciate that it's sometimes daunting to try new things, but I suppose there's no harm? Feel free to have a look through the KaleidoScope thread to get some inspiration and meet other members who are also into crafting And remember not to put any pressure on yourself when trying out new crafts or hobbies, it's all about having fun and making some cool stuff. 

Hugo_Lamb

Thanks @amsofly and I'm sorry to hear about your circumstances Francis and wish you the very best of luck, and it seems like Tori has some really good advice for you  

chiarieds

Hi @Hugo_Lamb - Welcome to this friendly & supportive community. I also have hEDS & the chronic pain! Have you come across the UK's EDS website? Please see: https://www.ehlers-danlos.org/

They have many regional support groups & currently online Zoom meetings. I just wondered if chatting to others with EDS to hear their experiences might help. 

Chloe_Alumni

Francis_theythem said:

@Tori_Scope I'm lucky, because I have a really understanding university. They provide funding for academic support workers when I need to be on campus for classes and my student support plan gives me allowances. It is pretty tough, especially going through diagnoses investigations, council stuff for carers and all the normal housing things at once. I'll be relieved when I graduate but also kind lost on what to do next. I was thinking about going into occupational therapy but illness, so I think that's just a dream ><

Hm I do have a colouring book and there are also these things that are foil carving, where they give you lines to scratch away to make an animal. I was thinking about maybe starting string art but it's difficult to try new things because since I got ill usually when I make plans or try things I never end up being able to carry them out, so it's hard. My functional level is getting a little better though so I was looking for a really easy low level craft and I came across string art

I'm so glad your university have been supportive @f@Francis_theythem! I graduated last summer and the support can really help. Do you have personal assistants through direct payment? This is what I had when I was at uni.

I used to do the foil art, really enjoyed it! Although they can take a while!