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Lonely and in need of advice

em83em83 Member Posts: 10 Connected
I am a 36  year old female,I have unilateral cerebral palsy, a heart murmur,endometriosis, anemia (so tired and breathless now) arthritis in  my hands,feet,ankles and shoulder, depression ,anxiety ,emotionally unstable personality disorder and PTSD. Up until a year ago I also had arteriovenous malformation , which  caused high risk of stroke and high risk of anurysm ,luckily radiation got rid of the tangle of vessels in my brain. I struggle everyday mentally and physically. I have been in and out of mental health hospitals for the last 20 years and in and out of general hospitals all of my life (age 36) I haven't enjoyed life for so long, everyday is so painful both mentally and physically , has anyone any suggestions on how to make life more comfortable ? Easier to manage ? I have just had a wetroom installed so that makes showering easier being able to sit down. My joint pain from arthritis is bad now the weather has got colder. I try to tell myself I should order my groceries to help me manage better so I haven't go to struggle to carry things ,but anxiety over delivery always prevents me ordering , I never used to get anxiety that bad before . I only have one friend really, and she has social phobia ,but I try to visit her. If I can get out I manage a few things, but then it leaves me exhausted and in pain for hours/days. I just want to know how I can lead a normal life. I spend 95 percent of my time alone 

Replies

  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    Hello hello Friend 
  • em83em83 Member Posts: 10 Connected
  • Lydia92Lydia92 Member Posts: 7 Connected
    Are there any support groups near you - maybe contact your local mind? Have you got any hobbies or interests?
  • em83em83 Member Posts: 10 Connected
    I haven't had any interests in life since I was about 14 , but I would like to try Ms discover new interests. I know I used to love art and craft but things like colouring hurts the joints in my hands now. But maybe I could just colour a little bit at a time I suppose.  There is. Mind centre near me, I just have to be brave enough to go in. I have a cpn but she gets frustrated with me she tries to get me to do stuff even though my health is deteriorating , I don't think she understands what it's like to have many conditions to cope with. I know there are people worse off than me , but living and being alone 95 percent of time it makes me health very difficult to manage. 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,489 Disability Gamechanger
    Hi @em83 and welcome to the community! I'm sorry to hear of all that you've been through, I can understand how you are feeling. Have you been assessed by an occupational therapist to see what other adaptations or devices/gadgets which may benefit you?
    Disability Gamechanger - 2019
  • em83em83 Member Posts: 10 Connected
    Yes it was my occupational therapist that arranged for the wetroom installed . I have grab rails installed in the bathroom as well as a raised toilet. In my kitchen I have a few gadgets like a screw top bottle opener and a jar opener and a automatic tin opener. One of the most painful conditions is my endometriosis but my GP doesn't seem to want to help me ,I would rather have a hysterectomy than live with the pain. My mum had it and she had a hysterectomy aged 39. I am 36. I worry my daughter will end up with it. (She lived with me til she was nearly 3 , then she was adopted because of my health problems, so the loss of her is also a daily struggle . I miss her terribly but I get letters and drawings twice a year and reply so that is a small comfort that I can find out how she is 
  • April2018momApril2018mom Posts: 2,869 Member
    What about you going to see her? Would that work or not? How old is she now? 
  • Richard_ScopeRichard_Scope Posts: 2,736

    Scope community team

    edited October 2019
    Hi @em83  
    You have a lot to cope with but the key thing is that you are and that shows a tremendous amount of strength and determination.
    I would tackle each issue in isolation. Starting with the endometriosis. You can ask to see another G.P. and be referred to a gynaecological consultant. 
    We are here to support you, I know it's different to real-world interaction but it's a fantastic community with great members. Scope has a helpline you can call as well on 0808 800 3333

    Keep in touch and let me know if you would like to chat.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • em83em83 Member Posts: 10 Connected
    Thanks that means a lot
  • em83em83 Member Posts: 10 Connected
    @April2018mom I can't see my daughter now she is settled with her new family. I'd give anything to see her :'(
  • pollyanna1052pollyanna1052 Member Posts: 2,009 Disability Gamechanger
    Hi Em, oh love..you have got it hard and having lost your little girl must be heartbreaking for you.

    I am wondering if my suggestion is of any interest......

    I have carers who come in and se to my personal care and they also take me out and on short breaks.

    This is mostly paid for with Direct Payments and a respite fund. I do make a contribution.

    To get this you first ask Social Services for a care assessment and they do their best to help.

    Any good? xxx


  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @em83 and welcome to the Community.  It is nice to meet you.  I'm sorry to hear of your struggles and it does seem as though you have been through a lot and I can appreciate how difficult things must be for you.  You have been given really good advice above so I don't really have anything to add, but just to know that everyone on the Community is here to support, listen and chat to you at anytime.  So please don't feel as though you have to struggle on alone.  Please keep in touch and let us know how you are getting on and if there is anything we can help you with then just ask.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • em83em83 Member Posts: 10 Connected
    Thank you , I have just been for a short walk, my ankles burning in pain but at least I got some fresh air. My cpn came to see me today, I spent most of the hour crying .I feel a little better since talking to her
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,955

    Scope community team

    I'm glad talking to your CPN has helped a little @em83. It can be so difficult to voice when you're feeling this way and sharing it can be quite therapeutic. I hope your ankle recovers quickly! 
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • em83em83 Member Posts: 10 Connected
    I have arthritis in my ankles so they won't get better but thank you 
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,955

    Scope community team

    Sorry, what I meant was that I hope the pain from your walk eases soon. 

    How often does your CPN visit? I hope you're finding your way around the community okay. There's lots of conversations in the Coffee Lounge if you fancy a chat. 
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
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