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Today is ME Awareness Day 2021, and as many of you know this is a journey we have been on since that fateful night at 11.45pm on 31st December 2015.

How our story starts

C had just left Primary School, and was excited for the next chapter of her life heading to Secondary School.  In the August my parents took her on a Disney Cruise.  She had a great time, but came home ill.  She had a bad throat and temperature and just unwell.  We thought it was just a bug.

She recovered, or so we thought and started Secondary School in September.  She loved it, made new friends as well as old ones from her old school. She loved getting the bus to and from school, but at times she would text or ring me to ask if I could pick her up as she was too tired to get the bus.

We thought, it was just her getting used to Secondary School, she would also fall asleep some afternoons she came in, or at the weekend if she was at home. It turns out she had Glandular Fever.

What is ME?

For the past few years I have written posts daily highlighting ME, what it is and how it affects those suffering with the chronic illness. I am going to share the posts below to share about the other things you never realise

  • How the person suffers
  • The parents/carers side
  • Medical support

1. Our story

Our ME story

This is our story in full of how ME came into our lives, how we never knew about it before and why.

2. Medical Support

Medical support that we have experienced

Sadly, ME was not well known, you may have heard about it but be unsure what it actually is.  Long Covid is pretty much the same as ME.  Hopefully with this in mind more support will go into looking at helping those who are suffering.

We have had some pretty awful medical support, I have had C in tears from a consultant, where she buried her head into me and cried and he still went on.  The arguments I have had with our GP who refused to believe ME was an illness, especially in children, the refusal of prescribing medication our consultants had prescribed.  It was one battle after the other.

3. The Parents Side

How we as parents feel

As a parent you want your child to be happy and healthy, both myself and my husband have had to watch our daughter suffer.  We have sat and cuddled her when she has broken her heart to us.  We have watched the sadness as friends have drifted away as their lives go on.  Felt useless as we have not been able to take the pain away.

We have become protective of throw away comments friends and family make, and go into defence mode and the heartache attached with watching life turn out totally different for her.

4. What is ME

Let me explain what ME is

ME is not a complex illness but one people should know about, as like myself and thousands of others it could hit you or someone you know at anytime.

Our life now

C also has IIH which in terms means she has ongoing migraines she literally has a migraine headache 24/7 so we are also under a neurologist.  We feel as well as her ME consultant that if we can get this sorted, we may move forward into her becoming a lot better with her ME.

You will have seen my recent posts about education if you missed them you can find them here

We are currently waiting on her EHCP to come through, and apply for a course.  There never seems any urgency and as each day goes by, applying for a course is becoming harder.

I hope I have given some insight into ME, and hope you never have to experience it yourself.  If you are going through this, I am always here to talk to whether it is asking questions, or being angry and wanting to scream and cry.  There are also some great supportive groups on Facebook that have been amazing support to us.

ME Awareness Day 2021

 

 

About Author

I am Sam and owner of StressedMum, I hope you enjoyed reading my latest post, I always love to read comments from my readers

24 Comments

  • Margaret Gallagher
    12th May 2021 at 9:06 am

    So glad ME is getting the recognition – still so misunderstood

    Reply
    • admin
      12th May 2021 at 9:11 am

      It is very misunderstood, although with the long covid it is starting to get recognition

      Reply
  • Nadia Josephine
    12th May 2021 at 11:11 am

    Definitely a hard condition to live with and the more people are educated the more we can all support those suffering and make life just a little bit easier and more accessible

    Reply
    • admin
      12th May 2021 at 11:33 am

      It is a hard condition to live with, and probably the hardest part is the understanding, which we have seen first hand many times now. Sadly one good thing COVID has had is long COVID which is very similar to ME

      Reply
  • Shirley
    12th May 2021 at 11:24 am

    That’s very sad for such a young girl.When I started having M.E I was 40 now I am 70 still struggling.I wish your daughter well and hope she will improve soon.x

    Reply
    • admin
      12th May 2021 at 11:31 am

      Thank you, it is heartbreaking seeing children so young suffering, sadly my daughter is not alone and there are many a lot younger than her. I am so sorry you have had to live with this illness as well x

      Reply
  • Chloe
    12th May 2021 at 12:51 pm

    Sorry to read about your daughter suffering from ME, it sounds awful what she must be going through, I hope she improves soon 🙂

    Reply
    • admin
      12th May 2021 at 12:55 pm

      Thank you it is one of those illnesses that needs awareness and sadly seems a common illness. It has been hard but we are a close family and get through day by day

      Reply
  • Aimee AMALA
    12th May 2021 at 3:28 pm

    I had Post Viral CFS in my early 20’s and it was awful. I feel for those going through it, its so tiring. However, there is help and support out there. It can be difficult to find, but with the right Dr it can really help.

    Reply
    • admin
      12th May 2021 at 4:15 pm

      It is a hard illness and finding the right Dr is very important, we are lucky to have an amazing Dr who we now see privately

      Reply
  • Melanie Varey
    12th May 2021 at 3:43 pm

    A great list for raising awareness. My dear friend has ME and it was useful to read this. I wish you and your family all the best.

    Reply
    • admin
      12th May 2021 at 4:13 pm

      Thank you I am glad I have given you a bit more insight in how it is to live with ME

      Reply
  • Kim Carberry
    12th May 2021 at 4:49 pm

    I have followed C’s story for years. You do a great job of raising awareness.
    I hope you get some news about the EHCP soon x

    Reply
    • admin
      13th May 2021 at 10:08 am

      Thank you, all I can do for C and for all the others is to raise awareness, I was hoping to get her EHCP through today but it did not arrive so hopefully tomorrow

      Reply
  • MELANIE EDJOURIAN
    12th May 2021 at 9:38 pm

    I know many have had issues when going for medical help. It’s a shame there isn’t the support there is for some other conditions.

    Reply
    • admin
      13th May 2021 at 10:02 am

      It is a shame and unfortunately every week I see more and more parents come through with the same thing and starting their journey in all of this, and nothing has changed

      Reply
  • Georgie Wright
    12th May 2021 at 10:02 pm

    I have autoimmune conditions that cause similar symptoms and result in the same types of misunderstandings. I hope there will be more research because of long covid.

    Reply
    • admin
      13th May 2021 at 10:01 am

      I am so sorry to hear you have similar, it is hard to keep hearing of the misunderstandings isn’t it. We can only hope that there will be more research into long covid

      Reply
  • Michael
    13th May 2021 at 12:55 am

    First time hearing something about this. Quite informative really. Continue to create awareness about this! Will help a lot of people

    Reply
    • admin
      13th May 2021 at 9:58 am

      I am glad I have made you aware of the illness, it is such a misunderstood illness and awareness does need to continue

      Reply
  • Rhian Westbury
    13th May 2021 at 12:21 pm

    Thanks so much for continuing to share C’s story and helping to raise awareness for ME as it does need to be spoken about more x

    Reply
    • admin
      13th May 2021 at 1:16 pm

      Thank you, in the past few weeks there have been introduction posts on a Facebook group I am on with parents in the same position we were a few years back. It seems no matter how far on you become it never changes. Sharing our story both as the sufferer and as the parent does help those who are struggling

      Reply
  • Rebecca Smith
    13th May 2021 at 6:40 pm

    Thank you for sharing C’s story. You have all been through such a tough time. Thank you for raising awareness of ME.

    Reply
    • admin
      14th May 2021 at 10:02 am

      Thank you, it has been tough and still is really, and sadly every week I see more parents in the same position we were a few years ago. By sharing others can see they are not alone in this

      Reply

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