ME Awareness Month – Week 1

 

 

 

 

 

 

 

 

 

 

As you will know my Daughter who is 13 has been diagnosed with ME.  We have been living with this chronic illness since December 2015, where she became ill following having Glandular Fever.

May 2017 is ME Awareness month, and I will be writing a post each week, and sometimes daily about this illness, and how it affects the sufferer and family.  Unfortunately, ME is one of those illnesses that many professionals do not believe is an illness, or they do not know how to treat it, and shockingly some of the advice given is damaging to the sufferer.

I will start off with the many levels of ME

As you can see there are a few levels of how ill people are with ME, my Daughter is Severe, where she is bedbound, and has to use a wheelchair when she goes out, which is only to hospital appointments.  She has no life and also now other symptoms including problems with her jaw which are so bad she can hardly talk or eat and breathing problems.

There is a lot of speculation out there, that ME sufferers are just tired and need to sleep more or have routined bedtimes, or that they are just lazy.  This is simply not the case, my Daughter also sufferers 24/7 migraine type headaches and is on daily medication for this to keep the pain away, brain fog, pains in her legs and feeling so unwell.

This is something we all face on a daily basis, ME is one of those illnesses that medical professionals just do not understand, and there is no magic cure for it.

Like my Daughter, everyone who suffers with ME just can not live a normal life, before she became ill at 12 years old, she was in year 7 of school, doing very well in the top classes, she had friends and a great social life.  Now she can not attend school or even cope with home tutoring, she is bedbound and just too ill to do anything.  She used to love reading but can no longer concentrate due to brain fog.  Instead of being a normal stroppy 13 year old who thinks she does not need us, she relies on us every minute of the day.

If we have to go to a hospital appointment, we have to prepare in advance, and on the day make it as stress free as possible, so that she can cope in the best way she can.  It always results in payback and she suffers afterwards.  Gone are the days of just getting up and going out.

This is the hardest part about this illness, the isolation, her friends have drifted away, I can not blame them they are 13 and living their lives, as any 13 year olds should.  But as a parent seeing your child lying there daily feeling abandoned is one of the hardest things to cope with.  She does have internet friends who she speaks to when up to it, but it is not the same as having someone here spending a bit of time with her, this is where my heart breaks for her.

I will be writing posts throughout May to give a glimpse of our lives and also try to show how this illness affects the sufferer, and how it is not just being lazy or wanting to spend all day in bed.

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70 Comments

  1. Claire Tripp
    05/05/2017 / 10:25 am

    A very good account of what it’s like having a child with ME. I get that it’s extremely difficult for people who are not going through this to appreciate what it’s like day to day. So all I ask of people is that even if they can’t comprehend the reality of living with or caring for someone with this illness to try and show compassion and understanding for sufferers of all ages and not disbelief and mistrust borne out of not really knowing much about it. x

    • admin
      Author
      05/05/2017 / 10:43 am

      I understand how difficult it is for people appreciate what it is like living with ME, so through the awareness month it is a great time to speak about it and hopefully open up the brick walls that surrounds ME x

  2. 05/05/2017 / 2:02 pm

    I used to work with someone who had ME, and only know the surface of how hard it can be for those suffering as well as their families. I’m sure you have a very strong girl, and spreading the awareness is such a good thing for everyone to understand better what it’s really like rather than common misconceptions x

    • admin
      Author
      05/05/2017 / 2:20 pm

      Thank you, if you only know the basics or do not know anyone with this illness, it is hard to understand the illness, I hold my hands up to being the same before C became ill. But living with it and seeing all the negativity and the battles that us as parents and also those who suffer go through every day, I feel that if I can at least let people try to understand the illness a little more it might make a difference x

  3. 05/05/2017 / 3:18 pm

    We need to spread awareness of what it is like to live with a chronic illness like ME and what the consequences for those who suffer from it are. You have such great information about the disease in this post and I’m glad you will be doing a series of posts throughout May x

    • admin
      Author
      05/05/2017 / 3:24 pm

      Thank you, ME is one of those illnesses that unless you have known someone or has suffered yourself, a lot of people do not understand it, and if I can just make it a little easier for people to understand then I have done something x

  4. 05/05/2017 / 8:14 pm

    I cannot imagine what it’s like to suffer with ME, it’s so brave of you to share this and I honestly didn’t know how debilitating it was, thank you for sharing this and for educating people on such an awful illness.

    • admin
      Author
      06/05/2017 / 2:00 pm

      Thank you, ME is one of those illnesses that a lot of people do not understand, and I will admit I was the same before my Daughter became ill with it.

  5. Ali Rost
    06/05/2017 / 5:44 am

    I’m so very sorry not only for your daughter .. but for your entire family. Illnesses like this have effects on everyone. I’ll be really interested to read more of your posts .. you know so much about the disease x

    • admin
      Author
      06/05/2017 / 1:59 pm

      Thank you, it is a horrible illness and one that does affect the whole family, I will be writing more posts on ME throughout May and also do little updates in my weekly posts x

  6. Dannii
    06/05/2017 / 2:07 pm

    You must have an incredibley strong daughter. I have a friend with ME and it’s so hard to see them go through that.

    • admin
      Author
      06/05/2017 / 7:30 pm

      She is a tough little thing, she has always had that streak in her, but it does get to her at times and seeing her break her heart as she feels so ill is one of the hardest things to watch as a parent, as there is nothing we can do to help. I just sit and hold her and believe me if I could swap places with her I would in a heartbeat x

  7. hannah
    06/05/2017 / 8:49 pm

    It’s good that there is an awareness month for ME. I don’t know a lot about it, so thanks for sharing this post

    • admin
      Author
      07/05/2017 / 12:54 pm

      Thank you, it is unfortunately one of those illnesses that a lot of people do not understand, even the health professionals x

  8. 07/05/2017 / 5:49 pm

    It’s not something I know much about but I think it’s great that you’re helping to raise awareness. Well done!

    • admin
      Author
      07/05/2017 / 6:07 pm

      Thank you, before my Daughter became ill with ME I did not know much about it either x

  9. 07/05/2017 / 6:00 pm

    We definitely need to raise more awareness of ME so it’s great that you’re doing your bit xx

    • admin
      Author
      07/05/2017 / 6:06 pm

      Thank you, like many other illnesses it is one that a lot of people do not understand x

  10. 07/05/2017 / 6:09 pm

    I cannot imagine the stress you are going through.. not really an easy thing to see your child suffering with some illness. I am praying to God that things will not be worse.

    • admin
      Author
      07/05/2017 / 7:03 pm

      Thank you, it breaks my heart daily she has a couple of other things wrong with her as well, which is brought on through the ME I think, which does not help either x

  11. 07/05/2017 / 6:10 pm

    I’m not sure I’ve heard of ME before now. Thanks for sharing the post. It’s good to raise awareness of illnesses.

    • admin
      Author
      07/05/2017 / 7:02 pm

      I did not know much about ME before my Daughter became ill with it, it is one of those illnesses that a lot of people are not aware of x

  12. Rebecca Smith
    07/05/2017 / 7:38 pm

    I cannot imagine how hard it is to live with ME and I think it’s great you’re raising awareness. It must be so stressful for you x

    • admin
      Author
      07/05/2017 / 7:57 pm

      Thank you, it is not easy and it breaks my heart to see my Daughter suffer so much, raising awareness will hopefully make people aware of the illness and also help those who are suffering and struggling know they are not alone x

  13. 07/05/2017 / 8:41 pm

    Thank you for raising awareness… I have close friends suffer terribly with this condition so raising awareness is so important.

    • admin
      Author
      07/05/2017 / 10:28 pm

      Thank you and I am so sorry your friend is suffering as well x

  14. 07/05/2017 / 9:34 pm

    I’m so sorry. I can’t imagine what she must be going through. Maybe the only bright side is that she has you taking care of her, making her feel as normal as possible.

    • admin
      Author
      07/05/2017 / 10:28 pm

      Thank you, it is horrible and we are very close and we do have a laugh and try to lighten things up x

  15. 08/05/2017 / 7:44 am

    Well done for raising awareness of such a horrible illness during the month of May, this is a really informative post – I didn’t know much about ME before reading it x

    • admin
      Author
      08/05/2017 / 8:50 am

      Thank you, it is one of those conditions that a lot of people are not aware of x

  16. Lena
    08/05/2017 / 11:33 am

    My heart goes out to you, I can’t even begin to imagine how hard that must be for you all. I think it’s great that you’re sharing your story as hopefully it will help others going through it. It’s so awful that in this day and age doctors still can’t do anything for those who suffer with ME.
    Good luck to you and your daughter

    • admin
      Author
      08/05/2017 / 11:52 am

      Thank you, one of the hardest things about this illness, apart from the illness itself, is the constant battles with health professionals and other professionals, as well as the comments of how I would love to be able to spend all day in bed, and she is so lucky not having to go to school, or she is just lazy and so on. This is why I will be sharing throughout May to try to let people understand just how this illness affects the lives of the sufferer x

  17. 08/05/2017 / 10:55 am

    Having had CFS as a teenager following glandular fever, I know how difficult it can be, and how thankful I was to have such a caring mother to help me through it. Love to you both.

    • admin
      Author
      08/05/2017 / 11:53 am

      I am so sorry you have experienced this awful illness, and having the right support does make all the difference, my Mum is an amazing support to us and she will take over and insist we get a break x

  18. 08/05/2017 / 11:26 am

    I can only begin to imagine what this must be life so thank you so much for sharing this information and your experiences in this important post.

    • admin
      Author
      08/05/2017 / 11:52 am

      Thank you, it is hard, but sadly is a way of life for us now x

  19. francesca
    08/05/2017 / 12:06 pm

    What a fab informative post!! I think these things are so important to be aware of as I’m not as clued up as I should be!

    • admin
      Author
      08/05/2017 / 1:04 pm

      Thank you, I live with this daily through my Daughter and there is such a lack of information out there x

  20. 08/05/2017 / 1:44 pm

    Very interesting post this. It’s really taught me a lot when it comes to ME

    • admin
      Author
      08/05/2017 / 3:48 pm

      Thank you, I am glad it has helped you understand a little about ME x

  21. 08/05/2017 / 2:43 pm

    I’m very sorry to hear of your daughter’s daily struggles with ME – it’s essential that we raise awareness and more support is given.

    • admin
      Author
      08/05/2017 / 3:47 pm

      Thank you, like with any illness it is important to raise awareness x

  22. 08/05/2017 / 5:05 pm

    I’m sorry to read this. It is so difficult living with ME. I have a diagnosis of this as well and it must be difficult for a young person as well. 🙁

    • admin
      Author
      08/05/2017 / 10:39 pm

      I remember reading that you also have ME, it is horrible in any age it is such a horrible illness x

  23. 08/05/2017 / 6:47 pm

    Great post, although I am sorry that your daughter suffers with this. I have had ME for the last 3 years since a virus following my youngest sons birth. I also have fibromyalgia and am told that the two often go hand in hand. I have spent the last 3 years having investigations for MS as again, the symptoms over lap, but other than brain lesions my lumbar puncture was negative, so it’s a waiting game I guess. Many don’t understand just how debilitating it can be. Thank you for sharing.

    • admin
      Author
      08/05/2017 / 10:37 pm

      I am so sorry you suffer too, a friends sone who has ME (he is 16) has also been diagnosed with fibromylagia as well. C is under a specialised department in London but there is a consultant locally who I am going to try to get an appointment for privately as he is very good. She also has TMJ which is the problem with her jaw, and someone said she could have EDS as well. She is just falling to bits on me x

  24. 08/05/2017 / 8:02 pm

    This is such a sad post to read. It is amazing that you are so open about your experiences and are trying to raise awareness or a very misunderstood illness. I wish you all luck for the future.

    • admin
      Author
      08/05/2017 / 10:29 pm

      I write openly for two reasons, one it lets it off my chest so that I am not bottling it all up, and the other is to raise awareness and also let others know they are not alone x

  25. 08/05/2017 / 9:43 pm

    It is so sad that she has to go through this at such a young age I really feel for her. I believe that Chronic Fatigue Syndrome is different, although many of the symptoms are the same. I have had CFS and it did affect my quality of life- in fact it was a long time before I was well enough to travel and work like I am again now. I really wish there was more support for your daughter x

    • admin
      Author
      08/05/2017 / 10:27 pm

      It is heartbreaking and sadly she is just one of many sufferers, it is unfortunately one of those illnesses that a lot of people do not understand and that includes professionals, all we can do is keep on plodding on and fighting our corner and we will get there eventually x

  26. 08/05/2017 / 10:35 pm

    Oh dear. Bless her little soul. Your daughter is so brave to put up with her illness. Thank for raising awareness.

    • admin
      Author
      08/05/2017 / 10:42 pm

      Thank you, she is a tough little cookie bless her she does have a stubborn streak in her x

  27. 08/05/2017 / 11:25 pm

    I don’t think I’ve heard of this before, so thanks for educating me. It’s important to raise awareness x

    • admin
      Author
      09/05/2017 / 8:26 am

      Thank you, it is one of those conditions where you have not heard of it unless you know someone who has it x

  28. tots2travel
    09/05/2017 / 7:49 am

    She’s so young, but I remember from school how debilitating glandular fever can be and how it triggered other problems. All the very best.

    • admin
      Author
      09/05/2017 / 8:26 am

      She is young, and unfortunately there are children a lot younger with her suffering (the youngest I have heard of is 4 years old) x

  29. 09/05/2017 / 9:26 am

    Wow so sorry to hear about your daughter. She has my full sympathy! I know full well how isolating this can be. Sending lots of loves and hugs to you and your family!! x

    • admin
      Author
      09/05/2017 / 9:29 am

      Thank you, it is very isolating, apart from the illness itself, this is one of the things I find hardest x

  30. 09/05/2017 / 10:31 am

    Very sad to read about your daughter. I totally agree that so much more awareness is needed. I don’t know enough myself, so it is very eye opening to even read this post. I didn’t even consider it being something that would effect children.

    • admin
      Author
      09/05/2017 / 11:55 am

      Thank you, I knew very little myself before C became ill, unfortunately there are thousands of children who suffer with this as well x

    • admin
      Author
      09/05/2017 / 11:55 am

      Oh it does, as a parent or carer for someone with the illness, you learn a lot from other people than you do with professionals and often we have to go in with the information

  31. 09/05/2017 / 11:56 am

    I am sorry to hear about your daughter! I used to look after a lady in her 40’s who had ME and although I was only her carer for a few months the decline was noticeable. She would often tell me how alone she was, she lived with her elderly mum (in her 90s)and other than us (The carers) she didn’t really see anyone else.

    • admin
      Author
      09/05/2017 / 1:14 pm

      That is one of the hardest things, the isolation, just before she became ill, we had started letting her have a little bit of independance going to and from school on the bus, and going out with her friends, it was like a big tease because as she started to become more unwell she would ask me to pick her up, and slowly she became isolated when she should be having fun 🙁

  32. 09/05/2017 / 2:29 pm

    I don’t think I’ve met or worked closely with someone with ME. Thank you for bringing awareness, as I don’t like being uneducated and am always happy to have better understanding of other people.

    • admin
      Author
      09/05/2017 / 5:30 pm

      Before my Daughter became ill with it, I did not really know anyone who had ME, it is surprising just how many people suffer with it unfortunately x

  33. 09/05/2017 / 8:58 pm

    I’m sorry that your daughter has to suffer from this terrible illness, and I wish you and your family a lots of strength. Your post was very informative, I’ve learnt a lot about ME, thank you for raising awareness on such a special topic.

    • admin
      Author
      09/05/2017 / 9:18 pm

      Thank you, I am glad that I am able to share awareness of this it is such a horrible illness that a lot of people do not understand fully x

  34. 11/05/2017 / 6:37 pm

    I really feel for your daughter, she is at the age when she should be out and about enjoying herself with her friends. Lets hope they find something to cure or at least ease the disease and soon

    • admin
      Author
      11/05/2017 / 7:38 pm

      Thank you, this is what I find so hard is she is not having a life, she must be so fed up of me haha x

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