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Losing my young adult daughter to M.E

Pippa_ScopePippa_Scope Posts: 4,011Administrator Scope community team
edited May 8 in Guest blogs

May 7th-13th is M.E Awareness Week 2018. Clare Norton is the mother of Merryn Crofts, who sadly passed away from terminal M.E at the age of 21. Today, Clare talks to us about Merryn’s Legacy, and her personal campaign to raise awareness of the condition.

merryn laid down in a hospital bed wearing sunglasses and with a feeding tube giving a thumbs up sign to the camera

Thanks for sharing your story with us, Clare. Would you like to introduce yourself and tell us a bit about your daughter Merryn?

I’m Clare and mum to Amy aged 24, Merryn who died aged 21 and Lara who died aged 8 days old.

Merryn was always a really loving and loveable child. She was a bundle of fun and mischief, stubborn, loyal caring and she loved her hugs no matter how old she was.

 She was a beautiful soul who always thought of others and would do anything to help if she could. Even when she was so very ill she continued supporting other chronic illness sufferers online.

When she was told her condition was terminal her main thoughts were of her family and loved ones. She wrote us a letter to be opened after she died, it took her over a year to write as she could only type a few words at a time on her phone.

That is the kind of person she was.

Merryn lived with Severe M.E for six years before she sadly passed away. How would you describe M.E to somebody who hasn’t heard of the condition before?

ME is a thief. It steals everything from the sufferer’s life. It is an illness of loss and isolation, Severe ME has been described as a living death.

 The medical answer to that is that ME is a neurological condition. It is a devastating multi systemic disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems and often follows an infection.

 It is characterised by Post Exertional Malaise (PEM) which causes a reduction in functioning and severe worsening of symptoms after even minimal exertion.

 ME can affect people Mildly, Moderately, Severely or Very Severely.

Hearing that Merryn’s condition was terminal must have been unimaginably difficult. How did you as a family prepare for her passing, and what advice would you give to somebody facing a similar situation?  

 It was heartbreaking being told that Merryn’s very severe ME was terminal, although part of me already suspected it. When I look back over the course of her illness she had been progressively deteriorating with no remission.

This may sound strange but there was also a feeling of relief that her pain would end but then devastation that the only way that could happen was if she was no longer here.

I couldn’t advise anyone else on what to do but we listened to what Merryn wanted. We had always talked openly about everything as a family and this was no different, although talking was very limited for Merryn so everything had to be done at her pace over a period of time.

She had a bucket list of things she wanted to do if possible and we helped her achieve what she could, from bringing Christmas forward to arranging a shopping trip from her bed.

It was also really important for Merryn to plan her funeral. I think this helped her feel in control when everything else was out of her control. She worried that doing this would upset me but it helped me too as I felt it was something I could do to help her - as her mother and full-time carer, I felt totally powerless to do anything that helped her or eased her pain.

It almost felt like her funeral became the wedding she wouldn’t have. She wanted a white horse and carriage, a cake with her photo on, photo boards at the reception and a balloon release – she wanted it to be a celebration of her life. She picked poems to go in her order of service and the clothes, shoes and sparkly headband she would wear. She made the day easier for all of us as we knew we were following her wishes, so typical of Merryn.

What helped us was to be open, talk and not avoid the subject.

Merryn laid down in a hospital bed wearing an eyemask with a cuddly toy by her side

Over the last year, you have been campaigning and raising awareness of M.E in honour of Merryn. If there was one thing that you could change about the way the condition is currently diagnosed and managed in the UK, what would it be?

The obvious answer to this is funding for biomedical research but I will instead say education of the medical profession.

Having an illness such as ME is difficult enough but on top of that is the additional stress of being disbelieved when accessing medical services (and also from family members and the general public) and the harm this disbelief does. We experienced disbelief and belittling of symptoms numerous times both before and after a formal diagnosis was made and we know this is a common experience ME patients suffer.

Finding a doctor who knows the condition and believes the patient is like gold dust, and means so much. This is how small the expectations of ME patients are.

Belief, early diagnosis and the correct advice mean the world, and can prevent deterioration of ME from mild to severe.

So, my small wish would be that doctors listen to their patient and respect their illness.

And finally, an inquest is being held into Merryn’s death in the near future. You’ve spoken before about how important it is for M.E to be recognised as the official cause of death- why is this?

It’s important as we have no idea of the amount of deaths related to ME as no records are kept. There is currently no diagnostic test for ME but I suspect there are deaths that are related to ME but not recorded as such.

There is only one person in the UK to date who has ME recorded as their Cause of Death from evidence found in her spinal column.  Merryn would be the second and that begins a pattern. It would show there are physical findings to be seen if the pathologist knows what to look for. This could then become standard to check in all post mortems where the person had a diagnosis of ME.

It would also be vindication for all the sufferers of ME who have been disbelieved and told it was all in their heads, and ultimately it could also inform research into identifying a bio-marker and ultimately treatment. To this end Merryn donated her spine and brain to The Ramsey Research Fund who conduct research into ME.

headshot of Merryn before her hospital admission with big blonde hair and wearing a stripy top smiling at the camera

May is M.E Awareness Month, and Merryn’s story has been featured in a BBC Newsbeat documentary, live on BBC iPlayer from the 8th May. You can keep up to date with Clare’s campaign by visiting Merryn’s Legacy on Facebook.

We're discussing Death and Bereavement on the community this week. If you've been affected by this piece or by any recent discussions on the forum, there are organisations who can help. Cruse Bereavement Care have a helpline and support resources available online, and you can also contact Samaritans 24/7 at 116 123 (UK), or by emailing [email protected]

Replies

  • deb74deb74 Posts: 220Member Chatterbox
    hi. i have a mild form of ME and the amount of people who haven't heard of it or think it is made up is unbelievable. even my doctor told me it was in my head when i started to suffer from it. there definatley needs to more of on understanding of the condition.
  • Sam_ScopeSam_Scope Posts: 6,030Administrator Scope community team
    Thank you so much for sharing this, my thoughts are with your family.
  • Marlie7Marlie7 Posts: 3Member Listener
    So sad for your beautiful daughters passing xxx
  • anonGanonG Posts: 15Member Listener
    edited May 9
    I have. M.E,and cant get out of my bed most of the time but its hard to believe the majority of healthcare providers refuse to believe it. They surely cannot believe we want to lye in bed 24/7 i have multiple health issues but not being fit for the smallest task is Hell thats what i'm living just Hell. I'm so sorry for anyone who has lost a child or lost any loved one. My daughter died on 31st July of multiple organ failure there were 2 pathologists who could not be certain as to what caused the multiple organ failure, so i'm left to just wonder why she died. Her death cert is multiple organ failure cause "uncertain". I cannot ever get over this i have lost very close loved ones but never experienced the horror feelings i am having it just doesn't go away and comes on right out of the blue. I'm sorry for your loss i cant imagine a wee kid with M.E as its so terrible for an adult. It must have been very frustrating if the apparent care givers treated your child as if it was her imagination because to this day i feel that they have a hatred for me i am so unwell with a lot of painful illnesses and diseases, but if i phone with a problem they tell me to come to the surgery and they should know with my file in front of them with everything thats wrong with me even without M.E that i'm to ill to go there. I'm not happy with them at all. There is no care from apparent health care providers. Ive suffered verbal abuse at [name removed], I've been shouted at on the phone where the whole practice must have heard, and i have been belittled with not one person to turn to,and not knowing what to do ive tried to take my life for the way GHCgp's have treated me. There is a letter on every notice board that there is zero tollerance for patients using any kind of abuse against NHS staff, thats a bloody joke! That should go both ways. I've been to hell on a constant return ticket from these abusive non compassionate non empathetic non caring horrible people and what they have put me through. 
  • clarenorton68clarenorton68 Posts: 8Member Whisperer
    I’m so sorry to hear this, sending gentle hugs to you xxx
  • Pippa_ScopePippa_Scope Posts: 4,011Administrator Scope community team
    I'm so sorry for your loss, @anonG- I'm sure many of our community members will be able to relate to your experiences with healthcare professionals too. 

    You are a member of our community and we appreciate you. If you are having thoughts of suicide, it is important that you discuss them with someone who is qualified to help. Please call the Samaritans on 116 123 (free) or email them at [email protected]. You might also benefit from reading MIND’s information on how you can look after yourself. If you feel that you may be an immediate danger to yourself, please call 999 or go to your local hospital right away.

    It might also be worth noting that the ME Association have a helpline service called ME Connect, run by a fully trained team of volunteers. You can find out more and get in touch with them here. I hope today is as kind as possible to you, and please do let us know if we can be of further assistance. 

  • anonGanonG Posts: 15Member Listener
    Thankyou pippa, theres nothing anyone can say and no pill that will make me feel different you dont know the whole story. I dont get on with my family they have never supported me through hard times of all my illnesses but for once ive been lucky i have a new tenancy very suited for my needs,but i have to try and pack up and leave on my own i have no help. I tried disability places but theres no help for me im struggling because i'm not keeping very well. I am going to have to pay rent to old house till i can manage to get everything sorted and out to new house. Ive got the world on my shoulders but im fighting my demons it jist gets to a point i cant fight them anymore sorry a fraction off of fighting them anymore. Thanks for your concern mental health team insulted me by saying i was to intelligent to be mentally ill. They dont know how wrong they are. 
  • anonGanonG Posts: 15Member Listener
    Why was the name of the Health centre taken from my post i'm not lying about that place and the hell they are allowed to get away with that they dish out to ill and already very depressed patients. 
  • htlcyhtlcy Posts: 128Member Chatterbox
    Thanks so much for sharing your story. I know Merryn's legacy will live on and I hope others will learn more about ME and that education will continue 
  • clarenorton68clarenorton68 Posts: 8Member Whisperer
    Thank you so much xxx
  • mossycowmossycow Posts: 397Member, Community champion Chatterbox
    So sorry to hear of your children passing.

    Such great suffering... But... I'm so encouraged and inspired by your hard work and energy in raiding awareness. Raising awareness raises money, creates support and we'll.. .It just helps, and saves lives.

    As others have said your daughter lives on in her legacy. She sounds so special and I appreciated being able to hear her story. 

    "To bloom where we are planted"

  • anonGanonG Posts: 15Member Listener
    I think i sent the following to wrong person it is meant for the lady who lost her lovely daughter to ME..  anonG → clarenorton68
    I'm so sorry for the loss of your daughter too i did mention it in my rant but it got me angry because i know what the skeptic health care at all levels do treat you like a hypochondriac  when your diagnosed with ME, they belittle you like an idiot and its the last thing you need there are all different types of pain going on all over your body its very hard to explain. I left the gp's everytime i could drag myself there crying my eyes out for days and nights and your right dying would at least get the pain away but the depression with it is just as bad ive had no support at all. God Bless i didn't really mean to go on about me i'm sorry about that. X

  • clarenorton68clarenorton68 Posts: 8Member Whisperer
    Thank you very much everyone for your kind comments xxx
  • anonGanonG Posts: 15Member Listener
    I would like to add this is me just joined last night and not sure of what i'm doing i dont even know what its all about. Sorry if i offended any one. 
  • Smile4DanSmile4Dan Posts: 7Member Listener
    It's so heart breaking too see stories like this, but also makes you remember all the little things we take for granted. Stay strong <3
  • clarenorton68clarenorton68 Posts: 8Member Whisperer
    Thank you very much Dan xxx
  • daisyboo10daisyboo10 Posts: 3Member Listener
    edited May 11
    So sad Calre, very sorry to hear of the loss of your daughter, as a parent myself I cannot imagine your pain and depth of that loss,, thank you for alowing us to hear and see your story. Thoughts and strength being sent to you..xxxxxx
  • clarenorton68clarenorton68 Posts: 8Member Whisperer
    Thank you so much xxx
  • sandra60sandra60 Posts: 3Member Listener
    so sorry for your sad loss of  your beautiful precious daughter my heart goes out to your family. thoughts and strength at this  deeply sad time be  strong XXX Sandra
  • clarenorton68clarenorton68 Posts: 8Member Whisperer
    Thank you so much Sandra xxx
  • feirfeir Posts: 341Member Chatterbox
    I heard of ME 20 years ago but didn't know it was a neurological condition just that it made people tired and that a lot of people didn't believe it existed. Definitely didn't know it could be diagnosed as terminal either.

    Hope you all get what you want/need.
  • Glad2bhereGlad2bhere Posts: 10Member Listener
    thank you for sharing your experience, and your openness about the way your family approached your daughter's diagnosis on her terms, characterised by focusing on what she wanted and being open. I know that when both my parents passed away recently, it was having had that opportunity to share important conversations that gave me the greatest comfort, and helped me make decisions on their behalf with their care teams that would not otherwise have been possible. It isn't easy acknowledging that someone is leaving you, but making space for conversations as and when they wish to talk about things that matter to them, is so important. I wish you peace.
  • clarenorton68clarenorton68 Posts: 8Member Whisperer
    Thank you so much, yes I think talking about things like that though daunting helps everyone xxx
  • Glad2bhereGlad2bhere Posts: 10Member Listener
    hope you are still finding it helps to talk things over when you need to.all best, 
  • clarenorton68clarenorton68 Posts: 8Member Whisperer
    Thank you so much xxx
  • BertiedogBertiedog Posts: 1Member Listener
    My daughter has had ME for 32 years.
    From being bedbound and having to be fed she has managed to overcome lots of almost impossibilities.
    She now has a 14 year son, who has given her a reason to carry on in,very difficult circumstances.
    I am very proud of her and admire her tremendously.
    There are still a lot of people including Doctors who do not b err lived in it




  • GailRGailR Posts: 11Member Whisperer
    I lost my only daughter, she was 15 in 2001. She had a genetic and rare illness Fanconi Anaemia. 
    I missed her every day. Missed will always 
    I met on-line bereaved parents - and have many friends for16 years 
    Talk to parents who lost a child ...... it helps
    Will to answer if anyone has now lost a child and if I can help xx 
    I have aphasia now after a stroke :(   
  • teighanteighan Posts: 11Member Listener
    So sorry for anyone losing someone close to them with M.E
    I was diognosed with cfs/M.E 6 years ago,it it a daily struggle. 
    I also have fibromyaliga, I have only been treated for my fibromyaliga via pain meds ect.. but not one medical profession has treated me for M.E .I should be having some sort of treatment tho shouldn't I? 
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