The ups and downs of living with a teen

ME Awareness Week

May 7th is the start of ME Awareness week, as many of you know my Daughter has been ill with this  since 2015.  Before she became ill, I had heard of ME but like many others did not fully understand what ME was.

Anyone can get ME at any age, it does not discriminate against anyone, my Daughter has ME due to having Glandular Fever, up until she became ill she was just like any other 11-year-old child.  At the time we did not know she had Glandular Fever we just thought she had one of the various viruses going around, she recovered, but looking back now we realised she did not actually ever recover.  There were times when she text me after school asking if I could pick her up as she was too tired to get the bus, times when she would go to bed early, the various pains, until ME took its hold on her at 11.45pm on New Years Eve, the moment all our lives changed forever.

There are many symptoms to ME and everyone suffers slightly differently, the main symptoms C has are

  • 24/7 migraine headaches
  • sensitivity to light
  • sensitivity to noise
  • chronic fatigue
  • shallow breathing
  • leg pains
  • various other pains
  • collapsing as her legs just go from under her
  • jaw problems

These are just her main symptoms, but this is what we live with daily 24/7, just going for a shower or a bath can cause her severe relapses.  At the moment she basically lives in her bedroom.

This week I am going to be highlighting ME, sharing our stories, and highlighting what ME is, as although the awareness is getting out there more, I have seen a change in the past couple of years, there is still so much that does need to be done.

From initial contact with our GP’s to ongoing contact with professionals, even now every time I have to speak to our GP about C it is an ongoing battle of brick walls, as there is no understanding of the illness.

If you have anything you would like to share if you are a sufferer, or know someone who is please get in touch and I will share your experiences.

If you would like to see other posts that I have written about ME you can find them here

So come on everyone let’s go blue this week to show our support for ME Awareness

 

 

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12 Comments

  1. My Nan has also been recently diagnosed with ME after many odd symptoms she couldn’t understand.
    I have definitely learnt so much from your blog posts on how to help my Nan and make life so much more comfortable for her in many ways.
    My thoughts and prayers are with your and C hoping that something comes out soon that eases ME Sufferers pain 🙏🏼

    1. I am so sorry to hear about your Nan, it is a horrible illness, we are seeing C’s consultant tomorrow thankfully, and really hoping he has some new medication to try to help her as her current medication is just not helping. Feel free to message at anytime if you need any help or support or questions answered x

  2. Hi Sam, this is such an informative post which I’ve learned a lot from reading. I have a couple of close family members who have been unwell, but undiagnosed, for some time and I think ME could possibly be the cause. Thank you so much for writing this post! Yaya x

    1. Thank you, I am not going to lie it is tough but what we lack in support from professionals we do have amazing support from other parents and sufferers which makes it that little bit easier x

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