The ups and downs of living with a teen

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 her tuition, and although she struggled she got through it.  This would not be possible without the huge support of her tutor who is great with her, and C gets on well with her.

We have had another symptom emerge, with clicking and painful mouth joints, it hurts to eat and talk.  On looking this up and speaking to other parents, this is a condition of ME, but also could be something else which presents itself like ME.  So am waiting to get her in to see our GP who understands the condition.

So as you can probably gather she has been having a pretty rough time of it lately.  So when the doorbell rang on Saturday morning and our lovely postman handed me a parcel for C, I could see through the wrapper that it was a parcel from Smile For ME.  This is a charity where you can nominate a child who has this chronic illness, tell them a bit about what they like and they send out a present tailor made for what they like.

Her parcel contained 5 gifts all wrapped in the Smile For ME paper with a little gift tag (excuse the bad photos but her curtains were closed due to the light affecting her and she wanted to draw).

Smile For ME, is a charity that are able to send these gifts to put a smile on a childs face, by working hard through fundraising and donations.

Please if you have a spare few minutes visit there site and see all the good work they do.

I can not thank them enough for the smile they put on C’s face and it was like they knew she was going through a rough patch and struggling.

Thank you for visiting x

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38 Comments

  1. Aw bless her, my joints click too especially my neck, arms and hips, she might have hypermobile joints which causes friction? Its great that Smile sent a nice parcel through for her x

    1. I think she does have hypermobile joints you should see what she can do with her legs (makes me feel sick), I was talking to other parents today and it could be an indication to something else which we hope its not. It was a great parcel x

  2. This is one thing I love about blogging, the ability to raise awareness, share experiences and educate. I have learnt so much about illnesses from blogs than I ever have elsewhere and it has really opened my eyes x

    1. Blogging is great to raise awareness, and the good thing about blogs is that they tell it from a personal side rather than a medical side x

  3. What a completely lovely idea. It must be so nice to have a little parcel to cheer you up when times are rough. Hope things improve for her soon. It must be hard

    1. I am looking at EDS at the moment, as C has some new symptoms and someone suggested it could be this. So sorry you are suffering x

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