I am about to be really honest...really, really honest. Sadly, it's probably just going to sound like a moan but this blog is about sharing the reality of our journey. So here it is.
In the last 403 days I feel like I have become a non person. Every part of my life is about someone else. Every decision made is based on what is best for that person. I am looked at with suspicion, pity and irritation by health care professionals who seem to think that I should know what I'm doing. I don't.
I get up on a Sunday morning, make a cup of tea and shuffle in my PJ's in to the lounge to watch the Andrew Marr show to find that a Health Care Assistant has put Top Gear on...again. Oh, and they're sat in my spot on the sofa.
I make plans for Christmas dinner with my family which then get debated based on whether Jake will cope by people who will all have lovely, peaceful and private time at their house...HELLO, IT'S MY CHRISTMAS TOO!
I am expected to be able to plan every conversation in advance, anticipating topics and having images available. News flash - this is not possible. I am expected to be able to attend any meeting at the drop of a hat and to understand all the medical jargon and options and make sensible decisions.
I can't go where I want for lunch, decide it's a beautiful day for a walk at the beach, sit quietly on my own in a room, pop into Tesco's for some milk or have a lie in.
Recently a Consultant even tried to say it was my fault that Jake's medication hadn't been reviewed. Seriously, how much are they paying you?!
I have to be a wife, an advocate, a financial manager, a mediator, a housekeeper, a proposal manager (yes, I still have a job). This means I am failing as a friend, sister, daughter, auntie, daughter in law, colleague.
At this point I would like to say that I love my husband more than anyone or anything else in the world. I couldn't imagine my life without him and not putting him first is absolutely a non choice for me. That's the easy bit.
I am only human though and, although it probably sounds childish and selfish, I am finding always coming second, whilst being expected to be a constant and devoted advocate and champion, a little difficult.
My switch is always 'on'. I'm a bit worried that the fuse may blow.
Everyone's situation is different. I can't say I totally understand your exact journey, but I can say I've traveled one that left me with all the feelings you've expressed so beautifully. Nothing I can say to make it better, really, but I do think of you & your Jake and am rooting for more "hope goes up" days for you!
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