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What sort of things /topics would you like me to discuss?

Tammyjane33Tammyjane33 Member Posts: 670 Pioneering
Here are a few suggestions that I could talk more about on my discussions that I've had personal experience with or worked with people who have brought these topics up (I am not a qualified doctor /therapist so I can not give medical advice. I'm here for support. Some topics you may find you want to discuss are
Comment below on the topic you would like me to talk about and share your story if you feel able to 😁
 :❤️hidden illnesses
💜Depression 💚accepting you have a disability 💛finding work when you have a physical illness (pros and cons)
🖤Mental illness 💓rare diseases 


  • rae8rae8 Member Posts: 3 Connected
    💚 I would love some advice on how to accept your illness.  I've had CFS and fibro for 10 years but still want my life back as it was before.  I have 2 teenagers who want to do things but I just can't or struggle so much I feel like I spoil things. Just recently my daughter has been diagnosed with CFS too and I feel so guilty and sad. Any help would be appreciated x
  • VictorVictor Member Posts: 148 Courageous
    I sympathise. I mean, I tended to stay in a lot even BEFORE my stroke but that was by choice. Now, I don't have a choice...
  • rae8rae8 Member Posts: 3 Connected
    When I was well we used to go hiking and climbing a lot and go to comedy and music events, now I don't manage any of that. Maybe a couple of times a year we go to a concert but I have to have been in bed for a couple of days beforehand and afterwards which is virtually impossible with kids! What do you do to fill your time at home? I fall asleep during tv/films and brain struggles when I read or do puzzles.. I think I'd feel more positive if I found a hobby I could get involved with.. 
  • VictorVictor Member Posts: 148 Courageous
    I'm a big soundtrack I listen to music and do stuff on this computer. and I get out when my family members come over.
  • April2018momApril2018mom Posts: 2,869 Member

    Arts and craft?

  • Tammyjane33Tammyjane33 Member Posts: 670 Pioneering
    @Victor hi I think it's great that you can escape by listening to music. I do that sometimes, I try to find different ways of coping with physical pain and the psychological problems that occur when you suffer with any sort of pain. 
  • Tammyjane33Tammyjane33 Member Posts: 670 Pioneering
    @April2018mom they  are good suggestions, thankyou.
  • Tammyjane33Tammyjane33 Member Posts: 670 Pioneering
    @rae8 thank you for sharing abit  about yourself.
    This may be a long reply. 
    I was diagnosed 10 years ago with a rare disease as its in the family and I've had it since birth but only showed symptoms as I got older. 
    When diagnosed I was told what it was but wasn't given any coping strategies or support on how to accept the change that was going to happen to me or what may happen. 
    With the condition being rare there is limited treatment plans that i can assess. Acceptance is difficult but I found tackling the situation at the here and now point is what helped me. I'm. Also in therapy which I should have been offered 10 years ago. I also think self help books helped me alot and cbt (cognitive behavioural therapy) I hope it helps 😊
  • rae8rae8 Member Posts: 3 Connected
    I do love music, if you don't already have one an Alexa is great for this I can just tell it to listen to whatever different type of music you like and it seems to have a radio station for it with no distracting talking 😀  what kinds of music do you enjoy @Victor
    Unfortunately I can't do sports due to pain and fatigue but I could definitely try a craft type thing. Thank you for everyone who answered x 
    @Tammyjane33 I think some CBT etc would be useful I do feel quite down x
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Always love your posts @Tammyjane33. :)
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