ME/CFS Awareness Week

Today is the start of ME/CFS Awareness Week, and everyone is going blue, so if you see a lot of blue around you now know why.

As you will know my Daughter has been diagnosed with this chronic illness, and it has changed our lives completely.  Before she was diagnosed I had heard of ME/CFS but was never 100% sure what it actually was, and just how much it can affect daily life.

A lot of people also struggle daily with living needs, of costs, there are benefits that can help make living a little easier, this ESA number will be able give your advice.

Today for example, after a relaxing weekend she can barely walk, is in a lot of pain and totally wiped out, resulting in no school.  We now have to live our lives day by day, depending on whether she has a good day, which means she can cope with school for a couple of hours and be able to walk. Or whether it is a bad day where she is in pain and either can not walk or can hardly walk.

Socialising is very hard also, as she gets so worn out, and if we do have anything planned we have to give her as much rest as we can before hand, and know that the next day she will be having a bad day or a few bad days.

There is a great little video (I have shared this before) that shows just what it is like for those who suffer with ME/CFS.  I think this is worth sharing again, as a lot of people just do not understand what it is like living with this chronic illness.

This is what my Daughter and many others have to face each day.

There is a lot of information out there regarding ME/CFS and I will be supporting this awareness week everyday.

The feature profile is in fact my personal facebook profile, which I have also changed in support.

 

 

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64 Comments

  1. May 9, 2016 / 2:00 pm

    OK how did I not know it was ME / CFS awareness week – I think I seem to miss so much sometimes, living in my own bubble! x

    • admin
      Author
      May 9, 2016 / 6:41 pm

      I only know as I am a member of a few facebook groups, as we are now living with this daily I am going to be promoting it this week x

  2. May 9, 2016 / 2:24 pm

    I can’t even begin to imagine how hard your lives are not knowing how your daughter will feel from one moment to the next x

    • admin
      Author
      May 9, 2016 / 6:33 pm

      It is hard but we just take one day at a time, today has been a bad day for her, it is so heartbreaking at times knowing she can’t just lead a normal life,but we make the most of it and her happiness is the important thing x

  3. Corinne
    May 9, 2016 / 6:38 pm

    It’s really great that you’re spreading awareness. I really hope you and your family are able to raise your little girl without too many complications and too much pain. It must be very hard but you seem like you have a great mindset towards it.

    Corinne x

    • admin
      Author
      May 9, 2016 / 6:45 pm

      Thank you , we just take one day at a time, if it is a bad day we have a quiet day, if she can not walk we call it her bambi day, we try to keep light hearted about it all, and she has some great friends who are so supportive with her which makes a lot of difference x

  4. victoria
    May 9, 2016 / 8:08 pm

    I cant even begin to imagine what life must be like for your daughter, yourself and your family, that’s why I think awareness weeks are so great! Although we hear these words and illnesses in passing, its things like this that make you understand even the slightest bit more than you did before. x

    • admin
      Author
      May 9, 2016 / 8:42 pm

      Thank you, before my Daughter became ill with this illness, I had heard of it but didn’t really understand it, the hardest bit is the tiredness side, as even now I sometimes think to myself why is she so tired, only briefly, but you can just tell by looking at her. It can also be a lonely place to be x

  5. May 9, 2016 / 7:49 pm

    So so sorry to hear about her ME./CF but thank god they have diagnosed her now, it is going to be a difficult slog but I hope she will get better in time. My best friends mum had the same and my friend was her carer, it lasted a few years but she is so much better now. I had something similar myself and it was very difficult to walk or do much but I am a lot better now.

    • admin
      Author
      May 9, 2016 / 8:44 pm

      I am sorry you have had similar and it is lovely to hear all the nice stories where people do start to live normally again. We just take it one day at a time and depending on how she is will depend on how our day goes x

  6. May 9, 2016 / 11:36 pm

    I know a couple of people with ME, one who is 18 years old, diagnosed a couple of years ago. Being so young it was hard for her but she is now in a part time job and volunteers too. She still gets tired but she achieves so much still. One day at a time is all anyone can do. Much love to you and your daughter.

    • admin
      Author
      May 10, 2016 / 8:24 am

      I have heard so many positive stories, that is does really help, it is just one day at a time and build from there x

  7. May 10, 2016 / 12:22 am

    It’s great that you’re raising awareness! The video really helped me better understand what living with M.E. must be like.

    • admin
      Author
      May 10, 2016 / 8:23 am

      Thank you, the video is great and I have shared it a few times, as it really does sum up what living with this illness is like x

    • admin
      Author
      May 10, 2016 / 8:20 am

      Thank you x

  8. May 10, 2016 / 9:31 am

    Fqntastic video. It’s so important to raise awareness of ‘hidden’ illnesses such as this one, to help people help sufferers. I hope your daughter makes a good recovery.

    • admin
      Author
      May 10, 2016 / 2:34 pm

      Thank you, I love this video as it really does explain exactly what it is like having this illness, yes on a good day it might seem that you are ok and nothing is wrong, on a bad day you are not being lazy you physically can not do anything x

  9. Charli Bruce
    May 10, 2016 / 10:55 am

    It’s great you’re raising awareness! My mum has a rare blood disorder which gives her the same symptoms as ME and she was wrongfully diagnosed with it before she found out what it actually was. She is always tired, can’t do much and takes every good day when it comes, she spends most of her life in pain, in and out of sleep. I can’t imagine how your daughter must feel xx

    • admin
      Author
      May 10, 2016 / 2:33 pm

      Your poor Mum, I hope she can be treated for her blood disorder. It is a very limiting illness if you have a bad day, and we do try to make the most of good days, but even on a good day she can’t go far x

  10. Harriet from Toby & Roo
    May 10, 2016 / 11:05 am

    Oh I’m so sad to read about your daughters struggles. My mother in law had ME too.

    • admin
      Author
      May 10, 2016 / 2:32 pm

      It is so common, everyone seems to know someone or has personal experience of it, but you never hear about it until someone mentions it.

  11. May 10, 2016 / 11:13 am

    That is such a beautiful an honest post and you have an amazing mindset, I wish you all the best and much love x

    • admin
      Author
      May 10, 2016 / 2:31 pm

      Thank you, you have to be positive or it will affect every day, and in turn won’t help my Daughter x

  12. Cassandra Mayers
    May 10, 2016 / 11:58 am

    My Last house mate had ME. when she had her good days she was so lively. on her bad she would be in bed all day. Nice to create awarenes.

    • admin
      Author
      May 10, 2016 / 2:30 pm

      It does seem to go like that you never know from one day to the next how you are going to be x

  13. May 10, 2016 / 12:51 pm

    It must be very hard for your family to live with somthing like that but great to help raise awareness of the condition.

    • admin
      Author
      May 10, 2016 / 2:29 pm

      We have our good days and our bad days, we do seem to have got in the flow of it now though, so although it is hard living with it, we do seem to just get on with it x

  14. Nayna Kanabar
    May 10, 2016 / 6:18 pm

    I feel sorry for your daughter to go through so much pain. You are a lovely supportive mum though.

    • admin
      Author
      May 10, 2016 / 7:40 pm

      Thank you, I am doing nothing any other Mum wouldn’t do x

  15. Marie
    May 10, 2016 / 8:14 pm

    Our little one suffers from a chronic illness called Lymphoedema she has primary and is only 1 so we are dealing with things as they come. Its rare to be born with it and there are only 2 specialists in the UK but we did an awareness week too. I think its fantastic spreading awareness, let me know how we can help.

    • admin
      Author
      May 10, 2016 / 8:24 pm

      Bless her, am so sorry you are going through having a child also with a chronic illness, it can be hard and lonely at times, if you ever want to talk please feel free to contact me. Like wise if there is anything I can do to help, please let me know x

  16. Jenni
    May 10, 2016 / 8:47 pm

    It must be so difficult for you both. It’s a great idea to raise awareness of the condition x

    • admin
      Author
      May 10, 2016 / 9:50 pm

      It is harder for my Daughter really as she is the one living with it, thank youx

    • admin
      Author
      May 10, 2016 / 8:26 pm

      Thank you, I know speaking from my own experience, I did not really know what ME/CFS was fully until my Daughter became ill with it, so if I can help raise awareness, or even offer support to others then it is all worthwhile x

  17. May 10, 2016 / 9:24 pm

    Oh bless you. I really do feel for you all. It must be so hard!

    • admin
      Author
      May 10, 2016 / 9:50 pm

      Thank you, it is hard but you just get on with it x

  18. May 10, 2016 / 10:07 pm

    I’ll admit I wasn’t too aware of this beforehand so you are doing a great job already at promoting it. Must be tough for your daughter and family. Let’s hope the good days outweigh the bad. X

    • admin
      Author
      May 10, 2016 / 10:18 pm

      Thank you, I never really knew much about it before she became ill. Hopefully she will start to have more better days than bad soon x

  19. May 10, 2016 / 11:33 pm

    I never heard of it before so it’s great that you are raising so much awareness surrounding it!

    • admin
      Author
      May 11, 2016 / 7:41 am

      Thank you, it is something you don’t hear of a lot until you start talking about it x

  20. Lyndsay-Rose
    May 11, 2016 / 6:40 am

    Thank you for the video, it’s really opened my eyes ME/ CFS. I’ve heard about it before but didn’t like to ask what it was, without sounding silly.
    I hope you raise alot of awareness

    • admin
      Author
      May 11, 2016 / 7:41 am

      Thank you, I was the same before my Daughter got ill, but this video really does explain it so well x

  21. May 11, 2016 / 7:45 am

    It must be so difficult for you all, and I hope that things improve for you all. An interesting read, I had next to no awareness before.

    • admin
      Author
      May 11, 2016 / 8:39 am

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

  22. May 11, 2016 / 9:07 am

    I hope she gets the support she needs. I know medication has helped a friend

    • admin
      Author
      May 11, 2016 / 9:48 am

      We are still experimenting with medication at the moment, we seem to have found the ones that work for her head pain, but not her other pains, she is on pain killers quite a bit this week, she usually tries to not take them though x

    • admin
      Author
      May 11, 2016 / 9:47 am

      Thank you, I had heard of it before my Daughter became ill, but never really knew what it was, obviously now I can talk for hours about it, so raising awareness helps others understand what she has to deal with daily x

  23. Fi Ni Neachtain
    May 11, 2016 / 10:09 am

    I have to admit that I wasn’t really aware of ME and the challenges it brings. Thank you for raising awareness and making people aware of what your daughter and other sufferers have to cope with each day.

    • admin
      Author
      May 11, 2016 / 1:18 pm

      I used to be the same, thank you am glad that I am raising awareness of how the illness affects the patient, as it is so difficult for others to understand x

  24. May 11, 2016 / 10:13 am

    I literally knew nothing about this disease so that video was really helpful. It sounds so awful and I’m sorry your little girl is burdened with it. I hope that there are more good times than bad and that she can be happy!

    • admin
      Author
      May 11, 2016 / 1:17 pm

      Thank you , I was the same before she became ill with this, I had heard about it but that was about it, the video really does sum it up really well and is so much easier to explain. We are working on more good days than bad x

  25. May 11, 2016 / 10:34 am

    Honestly thanks for sharing this, I’ve heard of ME but didn’t know much about it at all. I hope things get better for you and your daughter.

    • admin
      Author
      May 11, 2016 / 1:16 pm

      Thank you x

  26. May 11, 2016 / 5:58 pm

    I’m so sorry to hear about your daughter’s illness but it certainly sounds like she has an incredibly supportive family around her, and like you’re really doing everything to make living with it as comfortable as possible. It’s something I didn’t know much about either until very recently so it’s great that you’re spreading awareness.

    Jodie x

    • admin
      Author
      May 11, 2016 / 6:42 pm

      Thank you, we are trying to make everything as easy as possible. It is one of those illnesses that a lot of people are not aware of the symptoms x

  27. May 11, 2016 / 7:56 pm

    Well done for raising awareness hun, it sound as though your daughter has an amazing support around her x

    • admin
      Author
      May 11, 2016 / 9:53 pm

      Thank you, helping to raise awareness helps people understand how the illness affects her and other sufferers x

  28. Kizzy
    May 12, 2016 / 5:16 am

    I have worked with people with ME and know how debilitating it ca be. I hope your daughter is feeling better today x

    • admin
      Author
      May 12, 2016 / 12:23 pm

      It is hard, I would love to retrain and work as a support for people with chronic illnesses as it is so hard living with it and people understanding what it is. Unfortunately we are having a bad day and she had to go to physio x

  29. May 12, 2016 / 8:54 am

    Sounds like such a terrible illness 🙁 I hope this week helps more people to understand it!

    • admin
      Author
      May 12, 2016 / 12:14 pm

      It is horrible, even from my post a lot of people have messaged me saying they had no idea what this was or how you suffer with it, so am happy that I am able to help raise awareness of it x

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