I’ve lost count of how many times I have read on forums that parents with MS feel they are letting their children down. I feel like this myself sometimes; in fact this prolonged heatwave is making me feel it more so than usual. Like everyone else, healthy or otherwise, I am finding the heat unbearable. It is pretty hard to function when you feel this tired, achy and sluggish. I had a great comment from one of my readers who said that the heat is making her pins and needles have pins and needles – what a fantastic way of putting it and so true; for many MSers, myself included, heat makes symptoms go into overdrive. On the plus side this weather means that small talk in the Drs waiting room has never been so easy.
So life has become even more of a struggle and having no energy for my children has seen my guilt rocketing into serious orbit this summer. As far as I’m concerned it may just as well be pouring with rain or snowing. Family days out are on hold, as is any activity that involves being outside beyond 10am. Life has become a sequence of watching films and drawing pretty pictures. Unfortunately, and this is where the guilt really kicks in, I cannot be out in the garden for any length of time, which means neither can the kids. Child No. 1 is ok on his own, but No. 2 needs assistance with everything (getting on the swing, being pushed on the swing, getting on the bike, being pushed on the bike, getting the dolls pram out, pushing that around…) and No. 3? Well, he eats stones. They simply cannot be left outside on their own and so they too are stuck indoors.
I also find myself needing to rest far more than usual, which is sooo boring for kids. I remember my frustration as a very active and bouncy child any time my mum had a rest – I never let her, and now my own children are making me pay. The other day my 4 year old shut himself in his room and said, “I just want a piece of quiet”; cute wording, but the message was clear. Too often my children see me needing to sit down, to relax and, yes, to get some peace and quiet. It feels awfully unfair on them and I feel terrible for it. But I know I am not alone.
There’s no use saying that we shouldn’t feel guilty, that’s a given – none of us asked to have MS – but we feel guilty all the same. After all, guilt is what parents do best. Besides, all this lounging around indoors is actually giving me and the kids some quality time together. We are playing, reading, drawing, taking things slow and generally enjoying life’s simple pleasures from the comfort of an indoor fan-facing chair.