Living With ME 2 Years On


Regular readers will know that my Daughter C has been unwell since Christmas 2015, in March 2016 C was diagnosed with CFS/ME, you can read our first post here, where I talked about how she became ill and our emotional journey to get a diagnosis.

Last Year

Last January I wrote a post updating on a year of living with ME, which you can find here. although I update monthly on how C is getting on, it is now that time to write my next post 2 years on.

2 Years On

So here we are, 2 years on and still this horrible illness is taking hold. In some ways she is a lot worse than when we first started on this journey.

C is now 14 years old and should be enjoying life as a teen. She should be going out with her friends, shopping and talking about make up and everything else teen girls talk about. Instead she is 99% of the time isolated at home too ill or in too much pain to do anything.

She should be having the teenage attitude. Arguing with me constantly and everything I say or do winds her up. Instead she clings to me and needs me so much,

She should be able to wash her hair and shower whenever she wants. Instead we have to build up to it like a military operation. I have to wash her hair as it is too tiring for her.

She should be going to school daily and choosing her options for the coming years. Instead she has 2 tuition periods a week with a tutor, but can hardly manage these.

Last July, we had an appointment with a great Consultant who actually understands ME. And who everyone has been trying to see.  Luckily for us he is in our Trust and local. I know a lot of people who have travelled hundreds of miles to see him.  He actually talked to C and he listened to her. His diagnosis was Severe ME and Fibromyalgia along with joint hypermobility.  Even though her diagnosis had changed it felt like a weight had been lifted. As finally we had someone who understood. Which if you suffer or know someone who suffers you will know that this is rare.

As a parent, my heart breaks watching C suffer, the slightest thing can tire her out, her legs can give way, this week she has collapsed a few times, and she is having her migraine type headaches getting worse, so it will be another battle with our GP again to ask for her medication to be increased.

Another thing that is hard, is the looks from strangers when we are out, if I park up in a disabled bay I get looks, if C is in her wheelchair we get looks, this is when protective Mum comes out and I give that look, because unless you know the ME look (dark eyes) you will think she was fine.

If you are reading this and would like to talk privately, or know someone who is also going through this, I am always happy to talk to you.  I have made some great friends through this horrible illness who have been a great support and who have made me realise I am not alone.


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Comments (27)

  • Laura Dove 1 year ago Reply

    Gosh how hard for her when she is so young. I have had CFS since 2014 now, amongst many other conditions, and it’s incredibly tough and SO misunderstood.

    admin 1 year ago Reply

    I am so sorry you are suffering as well, such a horrible illness. We are currently at the stage where she is so ill because her medication needs updating, the consultant gives permission to the GP to do this, but our GP does not like to, so am now in the having to fight with them to do it, as her head suffers badly as does her legs x

  • This makes me sick. I still don’t understand why some people have to go through things like that so young. I really hope that there will be a way to support her and to relieve her from the pain…


    admin 1 year ago Reply

    Thank you, it is just a battle and process we have to go through, it is just unfortunate that this is one of the illnesses that the medical profession do not understand or some even believe in x

  • kate 1 year ago Reply

    So sorry you have this on your plate and really felt for you as I have a daughter almost the same age who is well. I am so rubbish a coping even when my children have a mild accident or illness so I admire you for keeping on keeping on so very much. There certainly used to be charities for this condition so I wondered if you had contact with/support from them. I love how you are reaching out to others too and wondered if you could access or set up a FB group for mutual support. However, I also feel honoured that you shared with us today on FB. She has you in her corner. She is blessed in that and I wish you both all the best going forwards

    admin 1 year ago Reply

    Thank you, my friend says the same her youngest is a year older than C, and she says she really wouldn’t cope with it, but when faced with it you just seem to carry on and it is normal for us now, which is sad. There are some great groups on Facebook and sadly far too many children suffering the same. I just like to reach out and let others know they are not alone there is support around from other parents who understand x

  • Bethany 1 year ago Reply

    This is why I have to remind people that illness doesn’t discriminate age, nor is it all in our head. I mean, who would make this up ..? Because it doesn’t just affect us, it’s all of the close ones around us. I understand all that she goes through, and my thoughts and prayers are with you all 🙏🏼

    admin 1 year ago Reply

    Thank you, it is unfair and it is hard on her, as a parent I am going through my angry and bitter stage where it just all gets to me, but awareness helps and this is why, like you, write posts about it x

  • Bethany 1 year ago Reply

    This is why I remind people tha illness doesn’t discriminate age, nor is it all in our head. I mean, who would make this up ..? Because it doesn’t just affect us, it’s all of our close ones aswell I understand all that she goes through, and my thoughts and prayers are with you all 🙏🏼

  • Jacqui 1 year ago Reply

    With you every step on this awful journey. With the publicity “unrest” is getting may be someone will listen and help our children.
    Sad ,angry and let down by professionals who should understand !

    admin 1 year ago Reply

    You know exactly how it is, with going through all this yourself, you really have been my rock through all of this. I am restarting my battle with meds being increased now as her head pains are getting worse 🙁

  • emma white 1 year ago Reply

    oh hunny how scary for you I remember reading about her being unwell but I dont think you had a diagnosis back then, I guess at least you have some answers now at least. Stay strong and keep being the amazing mummy that you are.

    admin 1 year ago Reply

    Thank you, that was quite an emotional time with her being ill and not knowing what it was, at least we now know, although the diagnosis has changed x

  • Erin Ek Rush 1 year ago Reply

    It sounds like it has been such a difficult time for you both.. so glad you were able to see someone you trust. Sounds like you’re doing a great job mamma x

    admin 1 year ago Reply

    It is hard, especially as a parent, but hopefully one day things will get better x

  • I’m so sorry it’s been such a hard couple of years. What an amazing post to put out though, especially your offer to help others. The more people can understand the better.

    admin 1 year ago Reply

    Thank you, I know how lonely this illness is and how isolated you can feel either as a sufferer or as a carer x

  • Tanya Brannan 1 year ago Reply

    I know a couple of people who were diagnosed with ME and I was just astounded as to what an effect it had on them. I had never had any contact/dealings with it so I really didn’t know that much. Through them being diagnosed I found out so much about it, and how debilitating it is.
    I hope there are better times ahead and your daughter can get a bit more of a life back, as one of my friends eventually did. Sending you loving thoughts xx

    admin 1 year ago Reply

    It is lovely to hear that one of your friends has their life back, I have amended C’s supplements today to see if they have a positive effect on her. It is a horrible illness and one that you have so much ups and downs with, I think the worst symptoms are the extreme tiredness and the pain x

  • Yeah Lifestyle 1 year ago Reply

    Thank you for offering a great support and help to others who are in the same situation as yourself. Its so beautiful that you are doing it.

    admin 1 year ago Reply

    Thank you, this is a very lonely and isolating illness and combined with the lack of professional help and understanding it is hard, so helping to get understanding out there and also be there for others is something I can do x

  • Emily Leary 1 year ago Reply

    I’m so sorry that you are both going through such a difficult time. It must be so hard with the lack of professional help that you’re being offered. I really hope things start to look up for your daughter.

    admin 1 year ago Reply

    Thank you, it is hitting me hard at the moment, and the fact she is in a lot of pain at the moment and I can not do anything about it is not helping. Hopefully things will start to improve a bit soon x

  • Whatlauraloves 1 year ago Reply

    What an awful illness to go through, especially at such a young age. Good on you for spreading awareness as I’m sure it’ll help others in the same boat know that they’re not alone xxx

    admin 1 year ago Reply

    Thank you, it is a horrible illness and very hard to watch at times, but if I can do something and spread awareness and support then at least I am doing something to help C and all the others who suffer x

  • Melissa 1 year ago Reply

    I applaud you on being so strong and continuing to advocate for C. I know it must be so stressful and all-consuming at times. Sending big hugs from New York. You’re doing fantastic!

    admin 1 year ago Reply

    Thank you, it is hard at times and emotional but we seem to keep struggling through x

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