I have not written for a while, I’m not sure why, I think maybe I thought there is only so much one person can bore people with about an illness, yes the illness that still is doing it’s best to mess up my life.
Lifewise not much has really changed, other than we have moved house literally around the corner from our previous house, but I love it – bigger rooms for the girls, bigger kitchen for me and closer to my parents.
My girls are growing up way too fast, my eldest is 14 tomorrow, I don’t even know how that happened, well I do but it seems you blink and they are these small adult teenagers with an attitude to match. My smallest changed Schools late last year and I can say we are truly blessed to have two fantastic Schools for our children – she loves it and has really flourished which is amazing.
Like all parents I just wanted them to be happy, eldest because her Secondary School start was horrendous and smallest suffered badly because of the eldest daughters experience and just how unwell it made her. Also my illness I know makes them both wobble – I left the smallest crying with my Mum this morning now she will always cover up why she is crying if it’s over me, so today it was because she misses her beloved rabbit which I know she does – as we all do, (she passed away suddenly a few weeks ago) but then she added you will be ok won’t you. I promised her I would be and that I was just meeting a new Doctor.
So that brings me to today, today I am off to The National Hospital for Neurology and Neurosurgery in London to see a Neurosurgeon – I have met him already and he seems lovely and positive that he can help me.
Someone has to help me as I’m at that point where as anyone with a long term illness may get too, where you get up and you try and get through each day best you can, some days I know I only get out of bed for my children, because there are days when I don’t want to function – mentally and physically and yes we all have those days I know , but for me they can be exceptionally hard.
People say to me your so brave, you are so strong, you amaze me how you just carry on, and at times I know I’m guilty of saying – oh I’m not at all, I am so lucky I don’t have cancer, or another life threatening disease – there are so many people more unwell than me, but lately I have accepted these kind statements with gratitude because these past few months have been really hard, and I do feel brave and I know I have be strong, it’s been so painful of late – I cannot explain the pain only two weeks ago, I ended up with a hospital stay because I couldn’t manage the pain not even morphine touched it.
It’s not just a headache – it’s the most unimaginable pain – pain that I could really do without, I’m nearly 41 I have a life to lead, children to raise, make some more memories with my husband, be a proper daughter – my parents are looking after me – I should be looking after them, this was never in my life plan!
So let’s see what London brings me today – what will they say? Will there be an end to IIH? Who knows but you won’t stop me trying – I will fight this all I can!
Thanks for reading – and yes I’m back x
Loads of love