Having a chronic illness or two is one thing but raising children with Ehlers-Danlos syndrome is another completely. I want to give you a little window into our lives so that you can see what goes on behind the scenes so to speak.  To orchestrate a semblance of normality to the outside world. Most families with their two point four children get their children up in the morning, give them breakfast and pack them off to school for the day, perhaps have a little chat in the playground then hurry off to work wondering in the back of their mind what they might cook for dinner that evening. In our house, the picture is a little different. I get my oldest up for school and he can barely stumble downstairs after finally falling asleep at 1am he has spent the whole night tossing and turning.  He eats his breakfast with his…

Childhood Pain

My kids have pain.  It’s real. One of the hardest things for me as a mother is to see them in pain and not be able to magic it better. Take for instance my daughter this morning.  She had slept well and got up for school, coming down…

Somebody once told me that the 40’s were the best years of their lives.  This was way back when I couldn’t imagine being that old!  It seems like only yesterday that I kissed my husband for the first time when in fact I was just 19 and that was over half my life ago.  It clearly wasn’t yesterday, not even close. Then out of no where, while I have been busy being a wife, a mother, an auntie, a daughter, an educator, an advocate, a grown up (scary)… I turned forty. Now I’m not worried about this number at all.  I’m now officially middle aged and I’m quite looking forward to this new chapter.  It’s true what everyone says when you are young and think that you know it all… you do become ‘older and wiser’.  As you gain years you also gain experience as well as a few pounds…

Falls

Most people remember falling as a child, even if you have to stretch your mind a little to think that far back.  Scabby knees, tripping over your own two feet because you haven’t quite grown into them, a little growth spurt making you super clumsy or just being…

I’m fine

I’m fine. I use this reply all the time when people casually ask me how I am. Is it the truth? What does ‘I’m fine’ really mean… (These examples are all taken from real life, recent events.  A snapshot into My Stripy Life) I’m fine.  I dislocated my knee…

My Pilates journey. At the medical conferences that I attend, be it related to Charcot Marie Tooth disease (CMT), Ehlers-Danlos syndrome (EDS) or for EDS kids, people ask the experts again and again ‘What can I do for myself to improve my physical condition? (Or that of my kids) Where do we start? People genuinely don’t want to struggle anymore they are ready to help themselves, to fight to keep their mobility, but are at a loss as to where to begin.  Many have had bad experiences with physiotherapy, can’t access the right services or have given up trying and as a result have become more de-conditioned.  Making everything harder.  The answer from the professionals is always move more and take up activities like swimming and Pilates. Joseph Pilates developed his method of ‘contrology’  during the early twentiety century.  The art of controlled movements, which when carried out and practiced with consistency, will improve…