daughter with ME/CFS

[angielou791417]

Hi everyone I posted several weeks ago regarding the possibiltiy my nine year old has ME/CFS . Now ellise has been diagnosed and we are waiting to go to a specialist centre in sheffield. Ellise is displaying every symptom its like a tick list of things that affect a person with this ilness. She is supposed to go to school three mornings but rarley manages to do all three. I am beginning to realise the massive effect this is on all our lives as a family and was just wondering if other people found this?? As ellise has regressed quite a lot and is clingy and very relient on me, sonthing she never was before, her seven year old sister had begun to mimic this and also act this way.her 14 year old sister handles it quite well but Her 17 year old brother clearly doesn't understand and thinks I'm soft on her when she cries and tantrums in frustation and her dad had similar reactions, which I think maybe his way of pretending its no happening???? I am very much caught in the middle of all this and sometimes feel overwhelmed trying to please everyone when deep down I feel ellise is my priority. Was just wondering if other mothers had felt like this or how other family members had coped with someone having this illness???? X thanx x

Hi ,glad to hear you got a diagnosis . I know exactly how you feel ( although my DH is completely on board and supportive) ,my DD has been out of full time education for 2 yrs ( is 14 now) with CFS and it is stressful .i only have one elder child who is a very high achiever and very unsympathetic! I have often thought it would be a nightmare if I had a younger child or another at school . You do eventually get into a routine, we have a tutor but we have an all day timetable with the tutor on it ,other times for schoolwork ,walking the dog ( if she is up to it ) ,visiting family, visiting our pony etc .although my DD is not 'improving' she isn't any worse and we don't allow laying about / sleeping during the day as that is a slippery slope to not getting out of bed ! We had CBT at KIngs last year but it really didn't work for us as we both felt that the Dr was too unrealistic in her expectations . Good luck to you all .