How we cope with ME/CFS

ME/CFS Awareness Week

As regular readers know, my Daughter C is 13 years old and has been living with ME/CFS since new years eve 2015, in those few moments her life changed forever.  I thought as it has been a while since my last full update (apart from my weekly updates where I always mention how C is), it is time to fully update on how we are getting on and just how much all our lives are affected.

I have written about what ME/CFS is, and if you are unsure you can find the post here.  It is an illness that can change a life, just like the click of the fingers.  C used to be a happy lively little girl, always busy and on the go and always up to something.  She started year 7 of Secondary school and had settled in very well, and enjoying the bit of extra freedom we allowed her, of taking the bus to and from school, going into town shopping with friends, the normal things children of that age does.

Then it all changed, and she became ill, it is very scary at first as you have a child who has various things wrong, and very scary when they collapse in your arms, or shout you as they have fallen on the floor and can not get up.  This is what goes on behind closed doors up and down the country.

Not only as a parent, we have to deal with helping our child with this chronic illness, we also have the extra battles with the medical profession.  Talk to any parent and they will all tell you the same thing, about the constant battles with the GP or pediatricians, who refuse to believe that this is a real illness.  Day in and day out we are trying to do our best for our child, battle with professionals, and then the added battle of education.  As you know on the education side I have been lucky and have been supported.

As a parent watching our childs life turn upside down, we see them laying in their beds too tired to get up, or their mobility is poor, we watch as they put a brave face on when their friends are out doing things, children of that age should be doing.  You can see the pain in their eyes.  You also face so called friends, some have blatantly said to me they don’t care, or they do not understand, this has honestly been a huge lesson in who my real friends are.  Those that have supported me, those that if they have not heard from me, will ring or text to see how things are, they are the ones I cherish.

When your child becomes ill, you suddenly feel very alone and scared, you are scared for the future.  In one of my down moments I was on Facebook and found a great group for parents of children with ME/CFS, this has been a lifeline.  Everyone feels the same, some just starting their journey others a years down the line.  You can go on the group and share anything, get advice, read stories of how a child is suffering or the ones I love, how one is having a recovery and has been out or having a bit of a life.  Sadly it rarely stays but it does give me glimmers of what could happen in the future.

As a parent my life has had to change totally, I have to be here for her 24/7, for when she is bedbound (which is most of the time at the moment) to get her drinks and meals, to sort her medication which she is on daily.  To sit and chat with her, to keep her going and to dry her tears when she is down.  I am lucky that my parents are a huge support and they insist on me having time out and having a night out or weekend away, and even supported us with a little holiday we are going on next month.  As in my Mums words, I need the break and it will not help C to run myself down.  I honestly could not do this without their support.

If you know someone who has a chronic illness, or any illness or are a carer for someone, just sent them a message once in a while just to ask them how they are, it really will make their day.

I am currently looking for other parents, who would like to share their experiences with my readers, either in way of one post sharing everyones stories, or a guest post.  If you feel you would like to share your story, can be about any illness not just ME/CFS.  Please comment below and I will get in contact with you.

 

 

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12 thoughts on “How we cope with ME/CFS

  1. I can’t imagine what it must be like for you but feel that your so brave and thinking of you all X

    1. admin

      Thank you, it is hard, very hard especially this week, which I will speak about in my weekly update x

  2. I think your mum is spot on and what an absolute sweetheart she is x

    1. admin

      My Mum is amazing, I really could not do all this without her support, and I love how my Mum and C have the same relationship as I had with my Grandma x

  3. Aw love this made me cry, to think of how much pain C is in it really breaks my heart. But do you know what I really admire , how strong you are as parents and no matter how hard your day is your never negative but real, thank you for being amazing and strong x

    1. admin

      Thank you Ana, it is heartbreaking to see her and hear of all the others suffering, as a parent you never have time to be negative as you have to remain positive and keep going x

  4. Although I have been reading your blog for awhile, It always moves me when I read your posts as I cannot begin to imagine how hard this must be for your whole family. One of my children is having a tough time at the moment, which puts so much pressure on myself and the family and when I get a message from someone, it really does make a huge difference

    1. admin

      Thank you, I rarely post how I really feel, it is so hard to keep going but you have to carry on and fight their corner, it is heartbreaking and for some people they just don’t understand, but some try or are there. I know my posts do help others and that makes me happy that me sharing does at least help someone. I am so sorry one of your children is also having a rough time x

  5. I admire and salute you for being so brave. I know you can all overcome everything. Rough times may be there but love will keep you moving. I wish you all the best for you and your family.

    1. admin

      Thank you, I am certainly not brave, I am just a parent of a child who needs me to fight for her x

  6. I can’t imagine how you are able to cope and how difficult it is especially when so many people do not understand this illness. My sister in law has ME and it’s been a difficult long road, she has finally found a new treatment from a private doctor that h as started to help her. I’m glad you are sharing this info for people who don’t know and bringing awareness

    1. admin

      I am so sorry your sister in law is suffering too, I really hope her new treatment works, it is such a horrible illness and one that very few know about x

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