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Hi I'm new

Hi I'm new to the community. 

I have fibromyalgia chronic fatigue, epilepsy and CpTSD  and im house bound at the moment.    I'm only 38 so quite an adjustment to get used too .   Struggling with lack of support at the moment. 
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Comments

  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @Empowerment1981 Pleased to meet you welcome.

    Thank you for joining and sharing.

    Sorry to hear your not too good . Finding it difficult no support.

    You come to the right place. You are not alone.

    I am one of the team of community champions..  We guide, advise and help new members who join the community.

    Please can I suggest do have the following support group.

    https://www.epilepsy.org.uk.

     Helpline 0800 800 5050

    Monday to Thursday 8.30am To 8pm.
    Friday8.30am To 4.30pm.
    Saturday10.00 am.  To 4pm.

    I also have the following mental health charities which may be of use to you for your CpTSD.

    https://www.richmondfellowship.org.uk.

    Get floating support and or an outreach worker. Help with your mental health and wellbeing.

    Any advice, guidance with anything else such as benefits or additional disabilities or issues.

    I would look at the MIND website as well.

    https://www.mind.org.uk.

    They might not be in all areas.

    Another one is RETHINK 

    https://www.rethink.org.

    Useful as an advocate for any problems with your care.

    Please have a look around our forum and website. We are friendly.

    Please enjoy your time with us.

    Please ask if we can help and advise some one will know. A member of our team or a member of community.

    Please take care.

    @thespiceman









    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Adrian_Scope
    Adrian_Scope Posts: 8,553

    Scope community team

    Hi @Empowerment1981! I just wanted to wish you a warm welcome to the community. Many of our members will be able to relate to what you're going through, so hopefully you'll find lots of support here. Please don't hesitate to ask if you need anything.
    Community Manager
    Scope

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  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Hi @Empowerment1981 and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  I'm sorry to hear of your health struggles and lack of support.  Please be assured that you are not alone as we are all here to support you.  You will find the forum to be a friendly, supportive space with lots of lovely people on it.  I can appreciate how difficult it must be to be housebound.  Do you have any hobbies you can do at home?  I find reading and doing some crafts can cheer me up when I am stuck in.  Also coming on here and chatting away can while away an hour or two also!  I hope you enjoy your time with us and please let us know how you are getting on.  If there is anything we can help you with then please just let us know.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Empowerment1981
    Empowerment1981 Member Posts: 21 Listener
    Hi Ails.

    Thank you for your message.   I do craft stuff and like painting.   Just had an order from hobby craft today with craft kits. 

    It's very tough being house bound and having no support. 

    Hope to connect more on here and not feel so isolated. 
  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Hi @Empowerment1981, you are very welcome.  Glad to hear you like crafts too.  I enjoy making cards and I knit.  What kind of crafts and painting do you do?  You will find a lot of our members enjoy doing crafts too and a lot of people share photos of their work on our Kaleidoscope page if you wish to have a look:-

    https://community.scope.org.uk/discussion/41283/kaleidoscope-our-own-gallery-for-members-art-work-crafts-and-photographs?_ga=2.206395283.1210385956.1573054393-525998048.1569505696

    Yes, I can appreciate how tough it must be for you being housebound and having no support.  Have you spoken to your GP about this to see if there is anything they can offer?  You will definitely find lots of support and friendship on here.  I have been on this Community for over a year now and have met many great people on it.  I'm sure you will too.  It's great having you on board anyway and I hope you enjoy doing your new crafts.  Please feel free to chat anytime.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Hi @Empowerment1981 and welcome to the community! :)
    Disability Gamechanger - 2019
  • Empowerment1981
    Empowerment1981 Member Posts: 21 Listener
    I've got a candle making kit.  Tile mosaic kit and painting kits.     Not really because I'm house bound I'm only managing telephone appointments with my gp now.   I was meant to have a care assessment last year but all cancelled and can't cope with the stress of dealing with mental health services.      Thanks for the link to the craft work always interesting too see.
  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Oh sounds fab!  I've always been interested in candles and how they get made.  Let us know how you get on with them.  I'm sorry to hear your care assessment got cancelled and can appreciate this is stressful.  I sometimes get phone appointments with my GP too and just wondered if they could even help over the phone or by giving you a house visit as it sounds as though you really need some kind of physical support.  I hope you get something sorted anyway, but we are always here to support you should you need it.  Many of our members are housebound too so can relate to what you are going through.  No worries re the link as lots of lovely crafts on it and I look forward to seeing yours on there at some point.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Empowerment1981
    Empowerment1981 Member Posts: 21 Listener
    I think the candle one might have to wait until i have more energy.   My fibromyalgia is bad at the moment.

    I don't think my gp does home visits.  Does your gp visit u at home?  
  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    I'm sorry to hear that your fibromyalgia is bad just now, @Empowerment1981.  I would assume that most, if not all GP's, do home visits.  Mine's has visited me if I am in pain and can't get out.  Don't get me wrong, some may be reluctant to, but I'm sure if you explain your circumstances and the fact that you can't get out then he/she would agree to see you at home.  Maybe worth a try.  I hope you manage to get your candle making done and feel better soon.  Please keep in touch and let us know how you are getting on.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Empowerment1981
    Empowerment1981 Member Posts: 21 Listener
    Thank u for the advice I do need to probably see the gp face to face more.     Do you get support? 
  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    You are very welcome, @Empowerment1981.  Yes, it would be a good idea for you to see your GP at some point.  Also what about phoning Social Work to see if they can provide any support for you?  Just a thought.  Yes, I am quite lucky as my husband is my carer so I relay on him a lot and I get support from family and friends at times too.  Also you may be interested to read the recent threads on here about Social Prescribing, as that might be an option for some support for you.  If you go into the Recent Discussions, you will find it there.

    If I can think of anything else then I will post, but I'm sure other members or the team will have some ideas too and of course, you will get support on the Community too.  Please feel free to chat anytime.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Empowerment1981
    Empowerment1981 Member Posts: 21 Listener
    When I rang up the adult social care last they were so rude too me.  That's nice u have your hubby to rely    .    It can be tough at times 
  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Oh I'm really sorry to hear that, @Empowerment1981.  That is not on!  I know that must have put you off, but maybe ring back to speak to someone else and even complain to them that someone was rude to you before.  Or even if they have an email address, maybe drop them an email as sometimes it is easier to write things down than speak on the phone.  I hope you get some kind of support and please let us know how you get on with it.  Yes, it can be tough at times, but there is help out there.  I would probably be stuck if I didn't have my husband as we live over an hour away from family and friends.  I hope you are ok and having a nice evening.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Empowerment1981
    Empowerment1981 Member Posts: 21 Listener
    Virgin care are in a terrible state there's reports on the news about the way they treat people and bad staff moral.   There is another service but will have to pay 46 pounds per week for 2 hrs support time.   Unfortunately I don't have any friends or family so very isolated.    There is lots of groups here but more for able bodied people.    Would be lost without asda online shop the milkman and pharmacy delivery to get my meds.   I'm watching corrie tonight how's your evening?
  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    I have never heard of Virgin Care myself, but that sounds awful about the way they treat people.  Yes, the other service I can understand would be very expensive for only 2 hours.  I'm really sorry to hear that you are so isolated.  I would encourage you to contact either your GP or social work for some kind of support or to try to look at the thread for Social Prescribing to see if that can be of any help.  Do you have any kind neighbours who could look in on you?  I'm glad to hear that you have some contact in the form of Asda online, the milkman and the pharmacy delivery service.  That must be a great help to you and you will get a wee chat there I would imagine?  We sometimes get Tesco delivery and the drivers can be really nice and chatty!

    I hope you are enjoying Corrie.  It is quite good just now, isn't it?  I stopped watching it for a while there, but have started to watch it again now and getting back into it.  What other tv programmes do you enjoy watching?  I enjoy documentaries, some comedy and reality shows.  My evening is ok, thanks.  I am one of the Community Champions on here so just catching up as haven't been on for a few days.  Watching tv too.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Empowerment1981
    Empowerment1981 Member Posts: 21 Listener
    I'll definitely look at the social prescribing is that on this site?
    No I've only lived here 4 months and to be honest no body really speaks to one another.  I have a home library Ser vice I access I met the lady last wk she is assigning me a volunteer to come and bring me books. 

    The online services are a life line too me.

    Yeah love corrie even in the saddest parts they bring humour to it.

    I love Netflix they bring something new every week on there.  I seem to be into season's at the moment.   I like comedy as well can lift your spirits can't it ?

    Must be really helpful to connect to others in similiar circumstances.    

  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Yes, it's on this site, if you click on the "Recent Discussions", you will find a couple of discussions/threads about Social Prescribing.  It is quite interesting and you may find it useful.  I'm sorry to hear that your neighbours don't speak to each other.  We live in a semi-rural village and nobody really speaks to each other here either unless you have been born and bred in the area and we haven't and have lived here for just over 2 years.  That's great to hear about the home library service and that you are getting a volunteer to come to your home.  Yes, when you have a disability/illness, often online services are a life line to you when you can't get out and I'm glad to hear that you are making use of them.  You will find this Community also to be a great life line too.  I have been a member for just over a year and it has helped me a lot being on here and just chatting to people.  

    Yes, Corrie is an institution, isn't it?  Been very sad lately, but yes, it can still be funny too!

    Oh that's good you have Netflix.  One of my friends has it and loves it! I've heard it's very good.  We have Sky, but often I just watch Freeview in our bedroom, especially if I am in pain.  Yes, comedy certainly cheers you up!  What's your favourite comedies?  I love Only Fools and Horses, Absolutely Fabulous and The Big Bang Theory. 

    I am logging off now as going to have some supper and feed my wee cat, but will be back on tomorrow so will be happy to chat again, anytime.  I hope you enjoy the rest of your evening.  All the best.  :smile:  



    Winner of the Scope New Volunteer Award 2019.   :)
  • Empowerment1981
    Empowerment1981 Member Posts: 21 Listener
    I'll take a look thank u.
    Think in this day and age neighbours don't really talk to one another seems very insular. 

    Gosh got so many watching something on Netflix called schitt's creek at the moment that's very funny.

    Yeah the big bang was great was sad when it ended.

    Enjoy your supper great chatting . 
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @Empowerment1981   Please can I ask did you look at the links I provided for you.

    I am sorry what you are going through.

    My friend @Ails has been chatting to you and I hope that helps. Very supportive member of our Community Champions Team.

    I am aware if you not happy with any care you have this is something I know myself.

    You can either consider looking for alternatives.

    Look on line.

    I know you could complain.  Use RETHINK.

    The links I provided.  If ever contacted any of these organisations.

    They are there to support you.  Offer some guidance, advice and signposting to anything you need to be keeping you healthy and do care.

    Please if I can help with anything further. Please get in touch happy to be supportive.

    Please take care.

    @thespiceman








    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes

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