How we cope with ME/CFS

How we cope with ME/CFS

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…

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Living With A Chronic Illness A Year On

Living With A Chronic Illness A Year On

As regular readers will know, C got ill on 31st December 2015, and was finally diagnosed with ME/CFS last year, you will have seen my weekly updates filling you in, mainly about how she had been that week, so I thought I would do a full post, on how it has been, the struggles and how she really is coping with her illness and how it affects us all as a family. This time last year, C was ill and in pain, and we seemed to be living at the…

A Mothers Pain

A Mothers Pain

As a parent all you want for your child is to be happy and healthy and enjoy their life, from that moment they are placed in your arms you have dreams for them, you want to protect them and take away any pain they feel. But what happens when you can’t take that pain away, when you have to sit and just watch your child suffer and know that you can not do anything. I have learnt a lot this year, as regular readers will know C who has just…

Smile For ME

Smile For ME

As regular readers ill know, my Daughter has been diagnosed with ME/CFS this year.  It has been hard on us all but C has coped so well coming to terms with her illness and diagnosis. I have not really updated much lately, she is now back in school for 3 hourly lessons a week, we have tried to increase but she just can not cope with the increase at the moment.  Last Wednesday, she crashed and was in bed suffering all day.  Thursday she was determined to go in for…

5 Things I Have Learnt About Caring

5 Things I Have Learnt About Caring

As regular readers will know, our lives have changed this year due to my Daughter having a chronic illness. Living with someone who has disabilities can be very hard and normal everyday things we all take for granted, are suddenly not so easy.  I have listed 5 things that have changed since she has become ill. energy – Even normal everyday things like getting dressed can wipe her out so we have to take time and prepare her, so that she is not rushing and can do things in her own…

A Mums Letter From The Heart

A Mums Letter From The Heart

Dear Mums and Dads of Children with a chronic illness I want you to know you are not alone, although you may feel very alone at times. I know what it is like to have your once healthy and happy child, suddenly over night become struck by this wicked illness. They go from leading a ‘normal’ life of going to school, seeing friends and being children. I have sat and held my child tight while she has cried her heart out, with the ‘why me’, when she is in pain,…

Make Your Home Accessible this Summer

Make Your Home Accessible this Summer

Summer is a great time for a get-together, whether it’s a big family meal, a kids’ party or a few friends having drinks al fresco. It should be a time for everyone to enjoy each other’s company and feel included, but for some children it can be quite a challenge. Those who have accessibility needs often require extra preparations to be made before they can move easily around a building, and this can make attending parties with friends and family much less simple than it should be.   It can…

#MillionsMissing

#MillionsMissing

Today my news feed on all my social media platforms has been over run with #MillionsMissing. It is all about showing support to those suffering with ME/CFS and showing what sufferers are missing.  The aim is to post a pair of shoes with the #MillionsMissing and write a note about what you are missing. The picture of my Daughters shoes look brand new, unfortunately they are not :(, and I have seen hundreds of other pictures exactly the same, just different shoes. #MillionsMissing represents the millions of ME/CFS missing from their…

A Little Trip Out

A Little Trip Out

Today, I have done something that I have wanted to do for so long, I took my Daughter out on a little trip out. Yes that is right you read it correctly, we went out and had a girls trip out. As you will be aware, she has CFS/ME, this means that she is wiped out and has trouble walking, so this has been something we have both missed doing. This week, has not been a good week for her, she has been bed bound for most of it, and…

A Letter to my beautiful Daughter

A Letter to my beautiful Daughter

Dear Daughter Today is ME Awareness Day and I am writing this letter to you, to let you know how amazing both Dad and I think you are. You have had a very rough year with being ill, you have had days and weeks, of not being able to get up out of bed, you have had times you have been so shattered you have not wanted to move, days where you could not walk (or your bambi days as well call them). You have missed a lot of school…