Hello everyone!

  • Hello! My name is Myra and I’m a young person. Despite this, I’ve been sick for the better part of a decade, which is a long time for anyone, but particularly for someone my age. ME has severely impacted my social and academic development, I would describe it as being more the severe end of moderate during my worst years.

    It has taken so much from me, forced me to stop doing all the things I loved and enjoyed, but at the same time, I’ve learnt so much and it has shaped me to become who I am today. I was a child when ME forced me to let go of friendships, to put down my viola because I could no longer hold it, to close my eyes as the words in a book swam around the page and refused to make sense.

    I had to learn to grieve for myself and who I could’ve been, to let go of my rage for the injustice of it. Sometimes it still bubbles up, but ME has also taught me so much. The importance of compassion, for both the self and others, as well as an appreciation for all the little things. I am now an adult, and I am so much better, but I am not well, even though sometimes I forget this and still hold myself to the same standards as other people.

    I have been blessed with a supportive family, a mother who has advocated for me through everything, with a doctor who tries her hardest to understand ME and do what she can to help - it took us many years to find her, she really is one in a million.

    The things that have helped me cope are my pet rats (hence the username) and the connection to the world provided by the internet. In recent years, I have taken up the hobby of weaving, it is low energy, and incredibly easy and fun, I highly recommend it.

    One of my goals is to write a book about my experiences, not to give medical advice (leave that to the doctors) but to share the lessons I’ve learnt. And to find an outlet for my desire to be heard. But it’s hard to get started, because it’s about my own experiences, there is so much to process before I can write it down.

    This year, I am cautiously optimistic about studying part time, hopefully it goes well, hopefully there aren’t as many... complications... as there were last year.

    Anyway, it’s nice to meet you all!

  • Nice to meet you, I hope you enjoy writing your book. Starting to write can be difficult, I find if you just start writing something, anything really, does not have to be with particular purpose it helps you to get used to the process so when you go to create something particular it comes more freely. Maybe you could jot down a few questions or headings on positive topics and set yourself the task of answering them, eg, Weaving and the positive impact on my life, why are rats are so important to me? Just a thought... I really should take my own advice and pull my novel back out....
    P.S- Rats are lovely companions!

  • @RatsAreFluffy nice to meet you. I'm a young person too and although I was already an adult when I got ill and I haven't been sick anywhere near as long as you have, it happened right at the point where I was commencing my adult life by moving out of home, developing my identity, getting a full time job, life partner etc. So it feels like adulthood has been stolen from me in a sense, and I can relate to your sense of loss and grief a great deal.

    Personally I would love to read a book about a fellow patients experiences. I've thought about writing one too - I love writing. Maybe one day...

  • @RatsAreFluffy Hi, Myra, Please to meet you!

  • What a beautiful opening post @RatsAreFluffy. You write with eloquence, and your perspectives ring so true to me.

    The grief is so real. It is a cousin of the loss of a parent for a child taken from them. Some of us lost the hopes and dreams of our future lives in late teen years, some later and some earlier.
    But as you say, there can be joy in our new lives. There can be an enhanced capacity to appreciate the little things in life, to be thankful for strong support, and to receive and give blessings generously.

    I too would love to read your writings. I look forward to seeing more here in this forum.

    kind regards,

  • Thank you everyone for your lovely welcome. I really should get around to writing my book, you’re making me all the more motivated.

  • @RatsAreFluffy Pleased to meet you Myra. What a fine young person you are to have got to this point in your life journey with such a deep sense of self and awareness of others around you. What ME robbed you of in your growing years, seems to have positioned you with higher standards than some in this world. I'm already a fan. May I suggest, that a book can be written in mini instalments. ✍

  • @RatsAreFluffy I tried to post something the other day and it kept telling me I needed more characters in the title... I was to tired to work that out then.....

    I thought maybe if you think of your book as a huge cake 😀 then draw a big picture and cut it into many slices. In each slice put what you really want to make sure you include in your book .... as in a particular topic or an emotion ....
    Breaking things down to a much more smaller less overwhelming option is something I have learned after being unwell for lots of my life.

    You are an inspiration 🤗

  • Lovely to meet you Myra and hello everyone. What a poignant post to read. You do write eloquently and thank you for sharing your experience. I'm sorry you had much taken away from you as a child with ME, so many losses at a time of major milestones that it seems everyone else gets to have. I love how you've shared what you have learned through your own experience and how it has shaped you. I really wish you all the best with your hopes for studying part-time this year and goal of writing a book about your experiences.

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