The Reality of Severe M.E, Fibromyalgia & Papilledema – Guest Post by Sam

Sam’s guest post is the 27th post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.

Meet Sam!

My name is Sam and I write at StressedMum blog, it originally started as my Daughter was leaving Primary School ready for her new adventure into Secondary School, and giving me more time on my hands. Unfortunately, she did one term and fell ill to a chronic illness. We live in Surrey with my husband and two dogs, my two eldest sons have their own homes and children now so am also a Nanny which I love!

My Daughter’s Story

My Daughter suffers with Severe Myalgic Encephalomyelitis or ME for short, Fibromyalgia, Papilledema hard enough for anyone to live with but a child is hearatbreaking

Common Symptoms

Tiredness is the main condition, brain fog and 24/7 migraine type headaches which she has had since the start of her illness, legs sometimes give way, weak muscles, bedbound, pains in her legs and body, noise and light sensitivity, and problems with her teeth.

How They Affect My Daughter

They affect my Daughter in her having no life, she can not go to school, is bedbound most of the time, if she does get up even to sit down stairs it wipes her out, she is in pain all the time. She has lost contact with her friends, and has no social life or education. I have held her so many times where she has broken her heart just wanting to be normal, she lives for the day she can return to school and be normal.

For us as parents we just take it day by day, let her lead in what she can ad cant do, we have to make sure there is always someone here for her, and always have to think of her first before we can even pop out or have an evening out.

Learning To Adapt

It just comes naturally now, we have lived with it for over 4 years and it is now daily life. For my Daughter it breaks my heart she is not living a normal life of a 15 year old.

Changing As A Person

I have, i am much more protective of her and will not let anyone think she is lazy or lucky (yes we have had that as she can spend all day in bed). I am much more tolerant of those struggling. For my Daughter she has become a lot quieter and withdrawn which is only natural really.

My Favourite Superhero

It has to be iron man I just love him!

Thanks Sam for sharing your daughters story with my readers and me!

If you would like to stay up to date with Sam, then you can find her on Twitter, Facebook, Instagram & Pinterest!

Posted by

Hey fellow superheroes! I'm Ami, I'm 24 and I live in Norfolk, UK. On my blog, UndercoverSuperhero, I openly talk about my recovery journey which stemmed from being in hospital and a specialist neurological rehabilitation centre for 9 months. I talk about how I maintain a positive mindset whilst coming to terms with my disability. I love superheroes, so much so that my partner and I are having a superhero themed wedding! I generally like to talk about anything and everything on my blog, I also have an ongoing series called "The Reality of..." which allows readers and bloggers to raise awareness of the disabilities, mental illnesses, chronic illnesses, impairments, that they live with as it is so important to raise awareness! Everybody has a voice! 💚

5 thoughts on “The Reality of Severe M.E, Fibromyalgia & Papilledema – Guest Post by Sam

  1. Thanks for sharing your daughter’s experiences of her illnesses with us, Sam. It is heartbreaking to read and must be very difficult for you all as a family. I know a couple of people who have M.E. too and it has been extremely hard for them at times in the past, although their symptoms have lessened now somewhat and are doing better now. I hope this can be the case for your daughter also one day. She is very lucky to have such a loving and caring mum such as you and she is such a brave girl in fighting her illnesses. I wish your daughter and all your family all the very best for the future. x 🙂

    Liked by 1 person

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