Today is ME Awareness Day 2023, as many of you know we have lived with ME in our lives since 2015. As my Daughter became ill and has suffered with Myalgic Encephalomyelitis or ME for short and Fibromyalgia since.
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What is ME?
ME is a long-term chronic, fluctuating neurological condition that causes symptoms affecting many body systems.Ā Most commonly the nervous and immune systems. ME affects an estimated 250,000 people in the UK and around 17 million people world-wide. With the current Corona Virus, it is feared that more and more people will suffer with ME.
Everyone who suffers with ME will experience different symptoms.Ā Some are completely bed bound, some can do normal everyday things in moderation.Ā Everyone is different, but this is an invisible illness, although one of the tell-tale signs myself and a lot of other parents see is that dark rings around the eyes. You can find out more inĀ my post explaining about ME.
How Did ME Come Into Our lives
ME hit us when my daughter was 11, she became ill with Glandular Fever. Although we thought she had recovered. New Years Eve about 3 months later, she collapsed in my arms, as her legs hurt and just went from her. We knew nothing about ME before this, we went from our daughter being full of life, loads of friends and loving school. To someone who just existed, was bed bound and lost all her friends. Education went on hold. You can read the full storyĀ here.
Being A parent
As a parent, when your child is ill you just want to make them better. If you can not do that, you feel like you are letting them down, and failing as a parent.
The times C would break down and sob her heart out to me, it would break me. I would hold her, let her get it all out and just make the promise, I will keep fighting and keep going. In privately, I would cry my eyes out.
Quite early on I found an amazing Facebook Group for parents of children with ME. It was amazing, so much support, understanding and information on there. You could rant and cry and others would know exactly how you felt. You would share the joy if a parent had some good news. Find out things you needed help with and more.
Where We Are Now 8 Years On
8 years we have been living with this, and even now 8 years on some people do not understand what ME is. C suffered 24/7 migraines, which meant she had one constant migraine. After trying every medication possible, she startedĀ GON injections. We were told that they do not work on everyone, she has had three lots now, and they did change her life so much. Sadly, they are no longer working and we are waiting on new treatment that will help.
This year she has managed full time College, doing a course she is loving. She is sitting GCSEās starting next week with the help of having an EHCP in place. They have been understanding of her limitations and her illness. Luckily she has mostly half days. Which has meant she can rest up and I often find her sleeping. She manages the pain, and does have a high pain tolerance. It has meant she has kept up with her course, but when home and weekends, she is in bed most of the time. She has made a lovely group of friends through college which has made aa lot of difference to her as well.
We are also looking at her mental health, as that has been affected and also waiting on a referal for inattentive ADHD.
If you are suffering with ME, know someone who is. My inbox is always open as I know how hard it is.
Thank you for sharing so much information on this illness. It’s great that you found a support group early on – I cannot imagine going through all of this on your own.
Thank you, I do not think you could go through this on your own. Although, it is a little more understood now with Long Covid it is still very much not believed or understood
Your writing beautifully captured the significance of this day and the experiences of those living with ME. It’s inspiring to see efforts to raise awareness and promote understanding. Well done!
Thank you, before C became ill I had no idea about the illness and raising awareness is important for any illness
I had no idea about this ME disease until now! Although my maternal uncle has migraine issues but his medicines are working great for him (touchwood). Glad she has got some lovely supportive college friends and doing better now š Thanks for raising awareness about this disease!
It is an illness that is misunderstood, migraines are horrible and we are waiting a new treatment.
Thank you for this. We need to spread such useful and informtive posts like this.
Thank you
ME is such a complex illness, a friend of mine suffers – she is mostly able to do day to day things but then also has chronic pain on top of it.
It is very misunderstood especially in children now C is an adult it is a whole new world
Admittedly, I am not well informed on this topic but thank you for bringing awareness to it. I hope your daughter continues to fight through this and achieve her goals. God bless
Thank you
Thanks for sharing information about this Me awareness. I didn’t know about this, very informative information. She was so amazing.
Thank you X
Thank you for sharing this post about ME Awareness Day 2023! It’s so important to raise awareness about this condition and support those who are affected. Your article provided valuable insights and resources, and I appreciate your efforts in spreading awareness.
ME like many illnesses is something you do not understand which is why awareness days are so important
A close friend of mine has Fibromyalgia and has been suffering from it for years. Good luck with the GCSE, she will do okay for sure.
Thank you she will be fine, sorry to hear your friend suffers with Fibromyalgia
Great cause, really important to raise awareness. Sounds like she has done really well.
Thank you, she is doing great and knows how to cope with it now
ME Is so misunderstood – I still have weeks of bed rest and still finding hard to deal with
It is very misunderstood sadly, annd until you personaly know what ME is you just will not understand
She has done so well to make it back to college again. Good luck with the GCSEs
She has done amazingly, we just need to get through the GCSE’s now