I wrote about whether Ehlers Danlos Syndrome makes you tired back in June and decided not to call that post ‘Fatigue in Ehlers Danlos Syndrome’ as it sounded too medical. Now, three months on, I walked back from school this morning pondering what the difference is (if any) between tiredness and fatigue and realised, in our world of EDS, yes there probably is one. So instead of calling this “Does Ehlers Danlos Syndrome make you Tired? – Part 2″ I’ve gone for fatigue – as that’s the point I think we’ve reached.
This is how I see it – and it comes with the usual reminder that Ehlers Danlos Syndrome presents in so many different ways, this may or may not ring true or be applicable for you. In our odd little EDS Type III with Type IV genetic marker world, I appreciate we do not fit directly into the defined EDS boxes – despite having the diagnosis – but I think a common trait of all EDS is the level of exhaustion we all experience at some point in the day/weeks/months and years.
‘Tired’ is something that happens when you do too much, stay up too late, over exert yourself or eat far too many carbs at lunchtime and have a massive sugar crash in the afternoon that means you just want to curl up and snooze. Tired for us is when we ask of ourselves what others would think is ‘normal’ but our somewhat bendy and fragile bodies find twice as much effort as someone without EDS.
‘Fatigue’ is when that tiredness never goes away. Not with early nights, drug induced sleep, rest, exercise, muscle strengthening work or otherwise. It’s waking up in the morning completely un-refreshed (or indeed feeling worse) knowing that you have a full day ahead of you and that it will be anything from a struggle to impossible.
With EDS I know that fighting the tiredness and fatigue is pretty much compulsory. Take to your bed and it will get worse. Take to the gym however and in the short term you will feel worse too. Knowing where the balance is seems to be a bit like finding the holy grail – it is such a fine line and one that remains a mystery to me. Trying to find it for the children seems even worse – and now they’re getting canny to the idea that pleading ongoing tiredness may be a way to get out of stuff.
The “but I’m tired” mentality is a very easy one for children to get into (and indeed for adults and that may lead to an almost complete exclusion of the outside world, which, in my opinion, is not a good or healthy thing). Every morning at the moment the children wake and appear in my bed bleary eyed, favourite cuddly toy tucked under one arm, thumb in mouth (I know I know) and then spend the morning being chivvied into their school uniform, into doing their spelling and music practise, eating their breakfast and getting to school. The general path of resistance to all of these is “but I’m tired…” (add whinging voice to that line for full effect).
I’m quite sure there are hundreds or indeed thousands of children across the country with no additional needs, medical conditions or otherwise, trying this line every morning and I am equally sure, it’s a line I’ve used myself. My job as their mother is to get them into school regardless – their target is to attend school regularly – and by that I mean every day unless there’s an appointment, vomit or something else relatively serious. They can’t have a duvet day just because they’re tired.
The thing is, I know they’re tired. I know that after 12 hours sleep they’ve woken up feeling the effects of yesterday’s PE lesson (excellent muscle strengthening work, they need to take part), of enjoying the unexpected sunshine at lunchtime and playing on the field and the challenges of having to get their food in their mouths and not down their front. Today will be no different but they are tired. Not tired like the little boy ambling into school this morning with bags under his eyes that look more like suitcases because he was allowed to stay up to whatever time last night.
My two have fatigue – they are long term tired and despite my best efforts we seem to be stuck in that place at the moment. Whether it’s the stresses of the new term (and boy, there have been a few of those), growing, or just ‘being’, their sleep isn’t fully recharging their batteries.
It has been pointed out that I may have over done things with them during the summer holidays. My plan for the summer holidays was to get them strong again after the tiredness and pain over the last few weeks of the summer term. It worked – their muscle tone has improved and the Cheetah Keeper’s left foot is in the best place it has ever been in his life. That is good. I still feel guilty though. Was it my doing that their fatigue has increased so much now we’re back at school – that they’re tired all the time?
Or is it me that’s feeling guilty and falling for the ‘but I’m tired Mummy’ line more than I should? I am very matter of fact about things still having to get done, but it doesn’t stop the churning of thoughts in my head. But I’m tired too and would class myself as having fatigue – I reach the points some days that even trying to focus on the TV in the evening is too hard. I get lost in conversations and forget what I’m saying. I have not other option but to keep going but often reach the ‘too tired to sleep well’ stage. The next day is harder than the previous one and things go on. My system is too tired to shift infections quickly, my joints are subluxing more frequently and my pain levels are higher.
If the children are feeling like this too what am I meant to do? For those of you with children in this position – trying to find the mix to balance tiredness, fatigue, physical exercise and education, what would you suggest? For those of you that teach, what are your thoughts?