If you have two mins please read my daughter’s story she wrote all about my illness. Feeling so proud right now!!!
My name is Naomi and I am 11 years old. My mum Louise suffers from an illness called H.S. It’s real name is Hidradenitis Suppurativa but like a lot of people I call it HS as it is hard to say and spell. A lot of people don’t know what HS is, I know quite a bit as my mum has had it my whole life.
It was hard for me when I was a little girl, not knowing what HS was, but I soon found out. I felt really sad when I found out and I felt really bad and sorry for my mum. I remember the time when my mum could of been in hospital for Christmas due to HS. I was laying on my bed Christmas Eve, my dad walked into my room and sat at the end of the bed. He tried to explain that mummy had to go into hospital again and that mummy might not be there to watch me open my presents on Christmas Day. I remember my face, my reaction and my feelings. That night I made a wish she could be there with us. To my surprise my mum WAS there, I was so happy. My Christmas wish came true! From that day forward there were always doubts ( even now ) if my mum would miss my birthdays or Christmases.
I’ve spent my whole life making my mum cards, letters, drawings, poems to say get well soon. I’ve never known anything different then my mum being poorly and being in pain.
When my dad moved out, when I was a few years older, it was just me, my mum and my sister. We did find it hard (especially my mum) but we managed. Then my mum met my step dad and after a while he came to live with us and it became easier as he was there to help look after my mum. Me and my sister are both registered young carers and we help my mum because sometimes she can’t do things, especially after her operations. I don’t mind being a young carer, I will always try and help my mum.
Sometimes my mum goes to hospital in an ambulance, and has to go to the hospital 30 miles away. I don’t get to see my mum a lot at them times as it takes a long time to get there.
I find it difficult when my brothers and sister cry because they want to have a cuddle with mum but she is in to much pain, or too weak to hug us as much as we would love. I don’t like them times. I like the times when she is alright and i can sit and have lots of cuddles with her. We try not to ask mum too much for cuddles because we know it will hurt her. My two year old brother is very energetic and likes to try and jump on my mum as he doesn’t understand at the moment and I will try to get him down as I don’t want him to hurt her as she has enough pain already.
A lot of the time my mum is in pain and she tries to hide it as she doesn’t want us to know, but I can always tell in her watery eyes that she is hurting. There are times that mum can’t tuck us into bed as she can’t get up the stairs a lot of the time now. Her legs are so weak from the HS that she falls over a lot now, I don’t like this.
I once wrote a letter to my mum saying:
To my number 1 mum,
I am scared because If I have HS then I will have to have all the pain that you feel.
I hope you know how much I love you, you are the whole world to me. Mum please never leave me. I love you so much, I really do. I wish you could get better because I would love to see you happy and pain free. I love you so much.
Love Naomi xxxxxxx
I think my mum is brave with her HS. I hope I never have it but only time will tell. If I do I know my mum will help me threw it.
I worry that one day she will get so poorly with it that the doctors won’t be able to make her better and she will leave us to go and live in heaven. If I lost my mum I would be heartbroken. I don’t no how I would cope with out her. HS doesn’t just affect the sufferer it also affects the family of those who have it.
I have had all my life seeing my mum this way and it’s been tough but it has made us all stronger people. I’m lucky to have such a brave mum. Not everyone can say that their mum is a true inspiration. I can.
Thanks for reading
Love Naomi xxxxxxxxxxx
Please also take a moment to read Louise’s other stories:
You asked what’s wrong…I will try and explain – Louise’s Hidradenitis Suppurativa Patient Story
Through My Eyes – Naomi’s Story – Daughter Of A Hidradenitis Suppurativa Patient
Through My Eyes As A Hidradenitis Suppurativa Warrior