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Hi, my name is Jennifer Hamilton and I have narcolepsy.

I have narcolepsy with cataplexy on the severe spectrum and struggle with anxiety and depression because of it. I struggle with daily living for many reasons but I feel people don't talk me seriously (apart from my consultant) as I look ok, so unless I am having a sleep attack or my cataplexy sets in people don't think there is anything wrong with me so assume things like I am being lazy ,which I am far from, I think I have OCD to an extent because I can't bare people thinking that of me. I have a 3 year old son who is amazing and so full of energy which I love but I feel so guilty sometimes that I can't do all the things with him that I wish to do. My family are amazing but still don't quite understand the impact it has on my life. My husband understands as he sees it first hand but isn't the most proactive person and can be very lazy which is the last thing we need as a family and he doesn't always help me even when he can see me struggling. I saw scope on Facebook actually and just thought I could maybe try it to see if it or someone can help. My dad has recently been diagnosed with cancer so that had made my mental health a bit worse. Thankyou in advance. Jennifer Hamilton

Replies

  • RedWhenHotRedWhenHot Member Posts: 20 Connected
    Hi Jenny,
    Hoestly, I came on this site with some similar issues.
    I had a bout of ADEM, which is a short name for the condition. The full name is rather a mouthful.
    Day to day, people don't see what's wrong with me and I don't care to explain it to them. Some of it is embarrassing anyway.
    Most of it really affects my daily life and people tend to come up with their own conclusions, that are almost always wrong.
    I also suffer from anxiety and depression because of my condition, and sometimes I just don't know how to get past it all.
    I'm divorced from my ex-wife, but I have my two daughters with me for half their time. Being strong for them has been my driving factor most days. Some days I don't know how/if I'd manage without them.
    However, the same with you it seems, I don't feel like I'm doing everything I could with them because of my problems.
    Really sorry to hear about your dad, and I can imagine how that must make you feel.
    My father passed away a few years ago, and it was tough for a while. I hope your father gets through this crappy ordeal.
    To have someone to talk to is a must I'm finding. Kinda why I'm here.
    I wish you well :)
  • JennyJHam1988JennyJHam1988 Member Posts: 3 Listener
    Hi, i am new on here so it's nice to have a response thankyou. 
    I find it frustrating and sometimes upsetting at how people can be so presumptuous that because an illness or disability is not visible, it's not there. Even some of my closest friends were like that, I have distanced myself from them. I have a friend who is in a wheelchair so her disability is visible and she is the most understanding, considerate, caring person about my condition which I find completely endearing about her, although our conditions are very different, alot of our struggles are the same. 
    I know what you mean, my son is the driving force that keeps me strong on down days and like I said before, I do have an amazing family and will be forever grateful for them. 
    Thankyou, I am sorry to hear about the loss of your father. 
    Definitely having people to talk to is a must. 
    Keep well yourself😀
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @JennyJHam1988   Pleased to meet you.

    Thank you for joining and sharing.

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

    Sorry to hear what you are going through.

    Please if I can add as part of my role have mental health issues myself with addiction history and a disability.

    I know as community we offer compassion, empathise and sensitivity.

    You not alone always some one here to talk to chat or discuss anything.

    Please can I advise and suggest that you look at mental health charities for your anxiety and depression.

    Many offer floating support, guidance advise on wellbeing health and benefits.

    Take clientele with additional disabilities, conditions or illness.

    The following may be useful for your mental health.

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

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

    https://www.rethink.org.

    For your Narcolepsy 

    https://www.narcolepsy.org.uk.

    Helpline 0345 450 0394

    Email [email protected]

    Please ask any questions happy to be supportive.

    Please contact me anything problems, issues need to know something.

    Please enjoy your time with us the community .

    Pleasure to meet you.

    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
  • chiariedschiarieds Community champion Posts: 2,884 Disability Gamechanger
    edited January 12
    Hi & welcome @JennyJHam1988 - I'm pleased you've joined us all as people are very supportive & helpful here. I see my friend thespiceman has offered his advice, which I hope helps you. As you've found, altho people can have different disorders, there are often common problems. I think that's one of the reasons this community works so well, as you'll find great understanding from others here. :)
  • emmarenshawemmarenshaw Community champion Posts: 607 Pioneering
    edited January 12
    A warm welcome to the community @JennyJHam1988  


  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 475 Pioneering
    Hi @JennyJHam1988
                                        Welcome to the community and thank you for joining us. I am sorry to hear about your father and for the difficult time you are having. Please feel free to ask any questions you may have as there will be someone on the community who will be able to help. There are many lovely people on the community and we are here to support one another. Thank you. 
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