“What’s a ‘normal’ or ‘average’ day for any family?  Get up, breakfast, school/work, home, eat, bed?  With the normal essentials of washing, homework and ‘jobs’, hopefully something cool/relaxing/engaging to do in free time and generally having the chance to just ‘be’.

With 3 of us in this household with Ehlers Danlos Syndrome – Type III we don’t really have an ‘average’ day.  Yes sure, we get up, have breakfast, go upon our merry way and end up in bed at some point but the actual realities of making a day happen are a bit different.

Here’s a bit of an outline so that if you happen to see an EDS child in your classroom or a parent of an EDS child at work, or someone with EDS at work, this is what might have happened to get them where they are that day…

Firstly, for many of us (possibly most of us?) Ehlers Danlos Syndrome makes us tired.  Really tired.  You go to bed exhausted, you wake up tired.  Subsequently, essentially we are not ‘morning’ people.

We try to have a relatively gentle start to the morning, it takes to work out what joints are doing what, what hurts, where upright is.  Some days it’s easier than others, for all of us.

Getting dressed is a bit of a challenge most days.  Children with EDS can find the everyday tasks of getting things on really tricky,  Muscles that don’t do what they want them to just makes things difficult, joints that bend backwards, fingers that struggle with the fine motor skill tasks like buttons and fastenings.  Sometimes the process of getting dressed itself is so much that remembering the sequence that everything goes in becomes a massive obstacle.    For adults, it’s the fiddly bits (try doing up your bra when your fingers bend in the wrong direction) or the balance that you need to put your trousers on.    For anyone with EDS that you see dressed, they’ve probably adapted, cheated or worked their way around something that causes them pain or difficulty – or had some help.

Breakfast.  Some people with EDS will have tummy problems so their breakfast may well be tailored to suit that.  Other than that you’ve got the challenge of actually getting the food into your mouth.  It’s a combination of fine and gross motor skills – getting your spoon to the cereal, the cereal on the spoon and the spoon into your mouth is a high risk exercise.  Some with EDS will have no problems with this at all, others (and I’m talking my house here) will be wearing their cereal, will have dropped their toast and possibly spilt their drink at some point in the morning.  Most days.  School uniform is rarely spotless but as it’ll come home covered in lunch and then be covered in dinner, life is too short to change!

Getting to work/school – it all sounds so straightforward.  In the 300 yard walk to school the chances are that one of us will trip, stumble or drop something.  Add something ‘cool’ like taking the scooter to school (thinking as a parent, ooh, a bit of extra physio = win) can make the journey so protracted you may have well left the day before.  Our record is 30 minutes to do 300 yards.  Others won’t be able to do that walk because they are in too much pain.  Being able to drive assumes that your joints are in a fit state to do so and medication doesn’t impair your judgment.

I wrote last week about children with EDS in the primary school setting and how important it is to understand what they may need or be going through.   At work there is a job to be done and in order to keep that employment, the job gets done.  For those with EDS, a job that another, non EDS employee finds routine may be utterly exhausting, painful or time consuming.  For a parent of an EDS child, the working day is punctuated with a generally long ‘to do’ list that somehow has to be completed in the same working day as which you are employed.    Finding an employer who understands the constant round of appointments, surgery, assessments, school meetings and such like is a truly wondrous thing.

NHS appointments lack flexibility – there are an awful lot of people that need to be seen and those much valued health professionals have their own lives and families.  There generally isn’t the option of saying “oh, could I come next Thursday afternoon instead of on Monday morning”, Monday morning it will be if you want to see that professional.  For a service we are so fortunate to have, Monday morning is generally just fine but you have to juggle working hours, education, transport and all that goes with getting there.

Today I’ve been following up a call from our physio team and block booking a number of sessions for a combination of physiotherapy and occupational therapy.  To be done after a certain amount of schooling and on the day when both our therapists can work together.  It’s a 1 hour window.  Then a quick meeting at school to make the plans to make this work – coming out of school for that window without interrupting too much learning or assessment time.   The maintenance of the lines of communication between everyone involved is an enormous task as is keeping track of all the paperwork involved.

Children with EDS fatigue so much faster than their peers.   Their peers are tired after school so the natural pattern would be to come home, chill out on the sofa and enjoy some downtime before dealing with the challenges of homework, spellings, more physiotherapy, occupational therapy exercises and such like.  However rest isn’t always good so extra activities, especially physical ones are seen as great in terms of building up muscle strength and therefore reducing the fatigue.  I may have uttered the words “vicious circle” before now.  There can also be extra tutoring and educational support to help the children keep up with their learning because they are unable to in the normal classroom environment.

Then after all this you’ve got to try and get food in your mouth again.  Get undressed, washed, into pajamas and into bed.   Except you’re so tired that keeping your balance to get legs into the right holes is really hard.  Administer or take the correct drugs, make sure whatever ‘kit’ you may need during the night is in the right place.  Then lying down hurts because you’re body is so tired that the joints won’t hold in place.  So you won’t necessarily sleep well, and then you’ll wake up, yes, you’ve guessed it, tired again.

Having EDS doesn’t mean that life stops.  It doesn’t mean that it’s all doom and gloom and that what you can do is overwhelmingly limited.  It’s just our day is a bit more challenging and perhaps a bit more painful than what someone else might call normal.  Going to the park, going to the pub, socialising, holidaying, pretty much whatever you like is, with a bit of planning and perhaps a few adjustments quite possible – just like other people do in their ‘normal’ day.”

An extra coordinated effort and flexible lifestyle helps this family manage the “average” family day.

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