I have wanted to start writing this blog for ages but just didn't know where to start, so today something happened that has really got to me and so I figured that today was as good a day as any to begin.
Well it is 2.45 on a Friday morning and as usual I can't sleep, my eyes are stinging from many tears, I ache all over and my bones hurt - rather like having a particularly bad cold or flu back in the days when I was well, these days since I have been living with this stupid unpredictable illness for over 9 years in varying severity, aches and pains are an every day thing that to be honest don't ever go away, just get worse at times but never completely disappear.
Anyway as I referenced above, today my soon to be three year old son asked me - "When am I having my party?" To put this into perspective, most of his main friends are children of parents I met through N.C.T. classes and therefore his friends all have birthdays around this time of year who's parties he has been to recently. He knows his birthday is coming up soon and so it's not unreasonable for him to ask this seemingly obvious question - but it broke my heart... I have been fighting with the idea of arranging a party for him for weeks now but know that if I do, it could cause me to crash, so can't risk it, especially as last weekend I ended up in bed when I should have been travelling to see my 8 year old nephew for his birthday (and that was only caused by going to have my hair coloured so having to sit bolt upright for many hours). All this has lead me to question whether it was fair for someone like me to bring my son (T) into my world. It's not like he was unplanned, quite the opposite in fact, he is an IVF baby and I question myself daily whether I did the right thing bringing him into the world of having a mummy with a chronic illness.
He didn't ask for this, being my son means that he hardly gets to meet other children his age because I find it difficult to go to toddler groups with him as it's so tiring for me to keep chasing around after him and I find standing up for too long a challenge as my heart rate goes up high. Also he has a different daily routine than most children his age, I have never been a morning person so we don't put T to bed until late in the evening so that he gets up late in the morning meaning that I have less one to one time with him (which can be challenging at the best of times, let alone on a bad M.E day) and he gets to see his daddy in the evenings when he gets home from work and his dad can help me by getting his supper and playing with him, getting him ready for bed etc. Anyway - as I was saying, we don't go to many toddler groups (even if I am having a good day) because they all start hours before we are awake.
It is now the following day - despite going to bed so late, I still got seven hours sleep but am feeling rubbish - as if I've had two hours not seven. My brain is only working at about 40%, my limbs feel so heavy and my throat is sore. I have no energy, everything is a chore (hey that rhymed! he he!). I am supposed to be going out with my lovely next door neighbour tonight to celebrate my birthday, just a meal out and a few cocktails but I'm not sure if I can do it.
Right I'm going to sign off now, I'm not really sure who I'm writing this for, just me or whoever wants to read. If you are reading this then a big "Hello" please ignore the way I am writing, I know it is all over the place.
