As you will know C has Myalgic Encephalomyocarditis (ME for short) and Fibromyalgia, along with chronic migraines. As May is ME Awareness month and yesterday was ME Awareness Day 2024. I am sharing our story and about the illness to help with awareness.
As many of you will know already, C became ill with ME in 2015. This is when all our lives changed forever. It is a very hard illness to live with, and a very hard illness to be recognised. Which is why I am sharing with you all. What is ME and also living with ME.
Table of Contents
What is ME?
ME is a long-term chronic, fluctuating neurological condition that causes symptoms affecting many body systems. 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. Some are completely bed bound, some can do normal everyday things in moderation. 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 in 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 story 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 9 Years On
For 9 years we have been living with this, and even now 9 years on some people do not understand what ME is. C suffers 24/7 migraines, which meant she had one constant migraine. You will know her ongoing issues with her migraines. We are now waiting to start treatment for a new treatment of Botox injections all over her head.
She is in her second year of her animal care course. Her tutors have been so understanding and supportive. When she can not walk, when she is just too tired or suffering nausea. To appointments. Luckily she does not have college for full days, some days are 1 lesson, or not in that day.
We have found that medical care for ME is pretty bad. The arguments I have had with our GP. The times I have taken her to A&E and had to explain to the staff what the illness is. Seen the staff on phone googling it. Her ME Consultant, who moved to private consultations, is amazing. He truly understands the illness. Listens to the patient. We have an appointment with him tomorrow. Which sadly could be our last, as I have heard he is retiring. We are both worried now about the future. But do know that there are a few other Consultants out there who are just as understanding.
The Hidden Side
As already said we are 9 years into this horrible illness. For those who see C, you would think she is ok. But if we plan a day out, or go and see my grandchildren. That takes time for her to rest up so she can cope for a few hours.
She has not got a social life, that 20 year olds should have. When she comes home from college and crashes. She is wiped out. Weekends, she is bed bound. She still suffers noise and light sensitivity. She wears earphones to help with the noise. I am so grateful to the lovely group of friends she has made. They are all so friendly and so supportive.
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 h
even now years later ME is so misunderstood especially the sleep cycle
glad the govt is finally taking more seriously
It is so misunderstood, I did read something the other day about it being part of your DNA
yes I reax the same – at least it’s being recognised
It is being recognised now
That is just terrible. My heart goes out to your daughter. Illnesses that are hard to diagnose are made so much worse by that fact. It took me over 30 years to be diagnosed with endometriosis. When finally I was, I realised that most of my daily pain was unnecessary if only someone realised it earlier. I had been going to my doctor with chronic pain for years. 🙁
I am impressed with your daughter’s resistance and determination to study against all odds, well done to her.
Like you have found one of the hardest things with illness, especially chronic pain. Is diagnosis and Dr’s who believe and understand what you are going through. I am so sorry you went through this until your own diagnosis. But once it comes it does help, although still various batttles to be had. She amazes me with her determination
Great to raise awareness – being a mum and watching your child hurt or not well is the worse feeling ever 🙁
It is horrible especially when you can not do anything to help them. Sadly C is really struggling at the moment
I didn’t know about ME before. Thanks for sharing about this health issue with us. I am so sorry for your daughter she has to go through this struggle.
Thank you, this is why I share our story for ME Awareness
Thankyou for highlighting and sharing all the points about ME. It must be heart breaking when your child is diagnosed with such a serious condition and there is nothing you can do within your powers to stop it. I think you are going a great job my bringing awareness of ME and supporting your daughter so well.
Thank you, it is heartbreaking and very lonely at the start, but there are some amazing groups where you can talk to other parents and not feel so alone
Thank you for sharing your story and bringing awareness to ME. Prayers to C and all of you during this journey.
Thank you, it is a very misunderstood illness which is why raising awareness is so important
I know that there are a lot of conditions and medical staff can’t know the in’s and out’s of everything, but you’d think they’d have some familiarity at least and not have to Google it. Thanks for helping to raise some more awareness of ME x
I do understand that, which is why raising awareness is so important
As a mom, it breaks my heart to hear about your daughter’s struggles with ME, but your positivity and hope shine through. Sending love and strength to you both, and may your daughter’s journey toward better health continues to progress positively.
It is heartbreaking, but sadly it is now a way of life. As a mum you just take it all on and show you are there and supportive. I usually get angry or break down in private where she can not see. Right from the start she has always known we are there supporting her
It is so saddening to read that your daughter suffers from this horrific illness. But one thing is certain. Your daughter will get better for sure!
It is sad that there are so many children her age and younger suffering. You never recover from a chronic illness. You can go into remission where you can hope that it stays like that
This is such a good cause, thank you for sharing! I cannot imagine being a parent and having a child with ME – you must do so much to support your child.
It is hard and heartbreaking, as a parent you just do it, there are so many support groups on Facebook. The hardest thing is medical support that is one brick wall after another
C is an absolute trooper for sure. Dealing with ME for nine years already! One of my friends is an ME sufferer and see the pain and fatigue that she goes through. It is a very debilitating invisible illness.
I am so sorry to hear your friend suffers too. That is the problem it is an invisible illness that so many do not understand
Caitlin has done so well
I’m barely up 8 hrs because I overdid it a few weeks ago
Diagnosed 15 + years ago
She is really struggling at the moment, but 4 weeks left of college. I am so sorry you suffer also. The payback is one of the hardest parts
Thank you for raising awareness of this illness. I’ve never heard of ME and I’m sorry to hear about your daughter. It really sounds like a terrible illness and I hope she is doing well.
Thank you, it is a horrible illness with horrible payback which C is suffering at the moment. A lot of people do not know about ME or about the suffering which is why raising awareness is so important
It has such a massive impact on all areas of life. C is absolutely amazing!
It does have a massive impact and she really is amazing. Now she is older she understands it more and can read her own body
I have had family members with ME and people really aren’t aware of how life controlling it is
I am sorry to hear about your family members. It really does control your life which people do not see or understand
Sending heartfelt support and understanding to your family member dealing with ME. It takes immense strength to navigate such challenges for 9 years. wishing you guys comfort and resilience.
Thank you, it certainly does bring up challenges
My heart really goes out to your daughter and family. I think she is so amazing to continue pursuing her goals through ME, but it must be such a burden not to be able to keep up with the things her friends can do. =(
Thank you, it really is heartbreaking to see her struggle. She is so lucky to have such an amazing group of friends who understand her limits
A friend of mine suffers from FibroMyalgia and I know a lot about it. It is really challenging and require a complete change in lifestyle. I’ve never heard of ME. I think we need to talk more about these health issues, thank you so much for doing it.
It is a horrible illness as it does take away your life, I am sorry for your friend who suffers with Fibro and glad they have a friend who understands