Hi, my name is RedWhenHot! Red for short :) — Scope | Disability forum
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Hi, my name is RedWhenHot! Red for short :)

RedWhenHot Member Posts: 20 Connected
Just wanted to say hi.


  • RedWhenHot
    RedWhenHot Member Posts: 20 Connected
    I had ADEM some years ago, and the fallout of that condition has been having a knock on effect with my life ever since.
    Recently, new problems have occurred from it and I'm finding it all a bit tough to cope with.
    I'm divorced and have two daughters that live with me for half their time. I always try to remain strong for them and not let the pain show, but honestly, it's tough sometimes. They're still too young to completely understand what's wrong with me, and I don't care to put this weight on them anyway. So, I carry on and keep it to myself.
    I've suffered from anxiety/depression in my youth, but the problems I face daily, have made this worse and I'm finding it building to a level I'm not sure I can cope with.
    I came here to maybe find people that are dealing with similar issues who I can talk to.
    Hope you're all having a good day :)
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hi @RedWhenHot - Thank you for joining the community. I'm sorry to read you're having problems since you had ADEM; have you discussed this with your Drs? It can be very difficult coping with disorders as many here will agree. You've come to a good place to be as we try to support each other with whatever we're going through, so I hope you find the community helpful.
    I'll ask my friend @thespiceman to give his advice as he has an understanding about anxiety & depression, & will be pleased to discuss this with you & share the resources he's found helpful.
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @RedWhenHot    Pleased to meet you.

    Thank you for joining and sharing.

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

    Sorry to hear what your going through. You not alone this website and forum we as community are friendly, care and share.

    You mentioned several problems issues and conditions.

    Please I would suggest and consider getting support for your conditions and especially mental health.

    I have mental health a long time have disability and addiction history. Advise, guide give information as part of my role to members experiencing difficulties.

    I do understand used these three mental health charities. Offer floating support and also looking at wellbeing, health and benefits and anything else you might need.

    Do take clientele with additional conditions, illness as well mental health.

    You can self refer or speak to your GP.

    Might not be in all areas.




    Also one other organisation found this organisation that relates to your ADEM.

    Hope that helps for extra information and advice.


    Please if you have any questions please ask happy to be supportive.

    Please enjoy your time on the website.

    Pleasure to meet you.

    Please take care.


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • RedWhenHot
    RedWhenHot Member Posts: 20 Connected
    Thank you for all this.
    Honestly, I've had this for such a long time, that I've looked into most aspects of it.
    My biggest issue, in real life I mean, is that I'm really introverted and find it hard to open up with people face to face.
    I had a bit of a break down recently, after some bad news from a specialist, and phoned the Samaritans.
    They were nice, really nice, but really didn't have any answers other than to listen and say "hmm", and "yeah", a lot, whilst I cried down the phone at them.
    I realised that connecting with people that have been through something similar (or life changing), may be a way to re-focus and help me to see a way ahead.
    I think that when I (and maybe others?), get a problem/set back, we are initially thrown back, and it takes a bit to come to terms with the new condition/limitation. Then we learn to cope and move along. But when this keeps happening, it can come to a point when we really need someone to help take some of the incredible burden we carry.
    Being the way I am, introverted, I find if difficult to share that burden.
    So, here I am. Reading about the issues all you good people are also suffering, but somehow managing to cope with.
    I'm in awe of you all :)
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hi @RedWhenHot - It seems you have a very good understanding of your medical condition, which helps enormously.
    I have a genetic disorder, so ought to be used to it, however I didn't have a name as to what it was for a very long time. I met Drs who said, well there's this disorder which is rare, never naming it, & I couldn't possibly have it!
    My eldest daughter had however asked me to look into the problems her younger sister had had some 16 years later as we had been told it might be a genetic disorder. I researched, & found not only might we have Ehlers-Danlos Syndrome, but also Chiari 1 Malformation, the chances of this happening being over 3 million to one, if there wasn't a genetic association. By a bit of serendipity I came across this NY neurosurgeon who found some of his Chiari 1 Malformation patients also had Ehler-Danlos Syndrome. Long story short he helped me raise awareness of this link here in the UK.
    Having asked me to look into her younger sister's problems, our eldest daughter didn't want to know more for several years; our son at age 13 had taken onboard that he had Ehlers-Danlos Syndrome, but found it difficult that he might additionally have another disorder.
    So, do understand from my children, that you perhaps go through this denial process before you learn acceptance.

  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @RedWhenHot Thank you for sharing your comments.

    Please if I can add you mentioning introverted being and having not acceptance.

    I do think that applies to a lot of the community members who have been diagnosed with any thing that causes their life to change.

    I was born with my disability even me having problems earlier in my life.

    I do understand and think what is important right now is finding what do want form any thing you are coping with.

    I suggest mental health charities nothing wrong having a look it is not what ever conceptions you may think.

    Large percentage of most mental health charities have clientele with a multiple range of problems.

    Healing the recovery the identifying, the acceptance can take a long time.

    Over a life time middle fifties from my birth had therapy, counselling numerous charities, mental health and it is still ongoing.

    Using each time enrolled in various charities organisation, societies.

    A good one for yourself would be volunteering using your own health issues to heal yourself but inspire learn form others similar to you.

    Why I ended up volunteering at mental health charities, disability clubs, socieities.

    Seek out lifestyle courses run by Community Health Unit.

    College called Recovery College deals with courses ranging from education to sleep to communicating with Doctors, public and services.

    To nutritional herbs, spice holistic therapies my personal interest.

    Many resource centres do these. Many are tailored to our community have staff who know identify those with problems.

    Do and take your time looking any of the links because it is proud being up standing and not acceptance but there again denial is a serious problem.

    Because if you say no a lot it because a repetitive process and people staff can be nil responsive.

    Had this former alcoholic friend who denial of anything. I am down in the clinic with him not me an alcoholic so on.  He walks out .

    Years later he is dead, sorry to be emotive but this meant he never got the help he need but that is the point if you do.

    Think of first yourself how and what you could achieve but also think of opportunities missed.

    Many charities have a lot to offer I do know of former clientele as they have enrolled being some one who could work for that charity.

    Offered support,, guidance even to College night school given support.

    Knowledge is the key yes you may have that but it is building a library a reference source to help you but could be for others.

    Hence my own reference library my extensive knowledge, education I know now to use for others but most importantly my self the healing.

    Lots of qualifications obtained if I said no never had got any where.

    I would recommend Open University do  courses often find can be eye opening and yes can be a major healing initiative to continue with the coping methods.

    The life you have make some choices, options do we stop stay still crying time or do we cope, move on deal and insist have this but use this to give yourself some confidence, self esteem.

    Something else to look at this link, please do not be alarmed.

    Not what you think, a lot of the organisation has a disability awareness.


    Using the words of the Christian faith and lots of the words of the bible can be motivating whether you beliefs or not.

    Power of prayers, meditation and reading what is available from many faiths, religions can be a thought  process.

    Makes you aware sense of purposes and can instil you in positive thinking.

    One life that you have remember mine has already been blighted but by addiction and now feel the warmth love and respect on this forum, plus the Christian faith helps me become whole again.

    Please take care.


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


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