Caring for a sick kid or kids when you have your own chronic illnesses to deal with can be one of the hardest things you will ever have to do.  I find myself repeatedly ignoring the warning signs that my symptoms are spiralling because I simply do not have a minute to deal with them.  My children quite simply have to come first and sometimes their needs mean that mine are not met.  In an ideal world we would pace everything, manage pain, eat well, stay hydrated you know the drill… but in reality this simply doesn’t happen. It’s a catch 22.  When I lack sleep, grab food on the go (because I’ve forgotten to eat, it’s way past lunch time and I’m still holding on the phone to the hospital to sort referrals and evidence for school), it means that the food I’m eating is not really what my…

95 Things NOT to Say to Someone with EDS or HSD

At this time, research statistics of the Ehlers-Danlos syndromes show the total prevalence as 1 in 2,500 to 1 in 5,000 people. However recent clinical experience suggests that Ehlers-Danlos syndrome may be much more common. Unless you know someone with Ehlers-Danlos syndrome (EDS) or Hypermobility Spectrum Disorder (HSD)…

I must admit this morning I’m having a bit of a meltdown. Schools again are causing me stress.  Different schools, different reasons, different children. I’m in the midst of hunting for a secondary school for my son and I am trying desperately hard to make to right choice for him.  I know from experience that you can visit all these schools and think that you have made the right decision only to find out that you have made a mistake.  At the end of the day all schools are good schools until you have a problem, it’s how well they deal with things when they go wrong that defines them, anyone can promise you the world but unless they deliver the goods in practice it’s all lip service.  It scares me. My other son is in a flare, a slight runny nose is enough with his hypermobile Ehlers-Danlos syndrome and…

I have three children, all affected differently with elements of Hypermobility Spectrum disorder (HSD), Hypermobile Ehlers-Danlos syndrome (hEDS) and Charcot Marie Tooth disease (CMT) and new to the ever-growing list this year is Chronic Fatigue syndrome (CFS/ME).  As well as having hEDS and CMT myself. We would describe ourselves as a happy family, we laugh a lot, we always make the best of everything life throws at us… a first glance I look like any other parent standing in the playground to collect their children at the end of the day.  What you don’t see is that managing our lives takes effort, immense effort. On the surface I hold it all together, I smile, make small talk with friends, make appointments, organise tutors, go for coffee, I’m a good wife, a good mum, a good friend but underneath the facade the cracks are there. This last 12 months have seen…

The Princess and the Pea

he story tells of a prince who wants to marry a princess, but is having difficulty finding a suitable wife.  One stormy night a young woman drenched with rain seeks shelter in the prince’s castle. She claims to be a princess, so the prince’s mother decides to test…