My Fatigue is empowering my children: a silver lining


So, all through the trials of having a chronic illness, I think it is really important (sometime REALLY hard) to look for the silver linings.. some are so small they are almost hidden, but some are bigger..

My recent flare up has shown me what an amazing community  I have (and people say London isn’t friendly!!) I have had many offers of playdates, other mums have stepped in at the last minute to take my kids to school when i couldn’t or when i had an appointment. I used to hate asking for help, actually i still do – it goes against every bone in my body… but, do you know what? It is great for everyone – friends want to help, they like to feel they are doing something to make your life easier.. AND you get a warm glow from feeling supported… I am working on being more honest with people and avoiding the easy ‘fine’ to the ‘how are you?’ question.. how people take the answer is really interesting!

Anyway, (me waffle? never) back to the silver lining of the title. My kids.. Firstly i am lucky they are old enough (6 and 8), but me being able to do less has meant that they have had to do more. Really simple tasks that i would have thought just easier to do myself, I have had to hand over to them. Tasks that I would have just snuck in on the way to doing something else are being done by my little work force (!). Don’t get me wrong, it is not all plane sailing, but I think on some level they realise they can’t push me right now and they really are helping.

They can now shower themselves independently, brush their teeth (although I’m sure the mummy police could pick holes(!) in their technique), and get their PJs on with no help from me. (maybe the odd prompt shouted from my room, like i said not all plane sailing!). I lie in bed while they get on with it, and then they join me for stories in my bed. I actually look forward to bedtime now. I used to dread it, hoping that i had enough energy to see it through without screaming my head off, often having to walk around with my head down because I was so dizzy and out of breath… I can’t believe i counted this as normal. (duh)

My other go to silver lining is a slightly more dodgy one – my weight… I have always had to work quite hard to keep my weight down.. until I got sick four years ago.. since then, when my MCAD flares up, I lose weight…fast. My body stops absorbing food properly and off it falls. I love being thinner… but it is a dangerous game to play – I’ll dedicate a full blog to it at some stage..

#ehlerdanlossyndrome #eds #posturalorthostatictachycardiasyndrome #POTS #mastcellactivationdisorder #mastcellactivationsyndrome #mcad #mcas #chronicfatigue #mumwithfatigue #chronicallyill #invisibleillness #spoonie #zebra #chronicallyillparenting #silverlinings



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