I’ve been having one of those days today.
I actually have them a fair bit these days but I don’t tend to blog about them. I just keep my head down and wait for the sun to start shining again! Those who know me know that I am not the kind of person who shares her feelings that easily….I think this stems from me being an only child – I grew up keeping my feelings to myself, simply because I had no one to share them with. But anyway, as an adult I find it no easier to share how I really feel about things.
Caring for a disabled child is hard work…physically and emotionally. In fact these days I find the emotion part harder that the physical stuff. As Jack gets older his condition changes, sometimes for the better and sometimes for the worse. But I know that whatever changes come, one day I will lose him, and the older Jack gets…the more difficult it is to deal with. For instance there is the old chestnut of his epilepsy. As I have explained before, Jacks seizures are nothing short of spectacular and can scare the crap out of you if you aren’t used to dealing with them. They are gradually worsening and will most likely like be the cause of Jacks death. As a result every time Jack has a fit, you always have this thought in the back of your head saying “is this it?” I can deal with the fits with my hands tied behind my back practically, but every time I witness one I have to say it’s kills a tiny part of me inside….one tiny fraction of what makes me get out of bed every morning dies. No one knows this – I don’t tell them….what can they do, so whats the point in discussing it. As long as I can look after Jack and keep him as comfortable as possible, what good will it do telling someone that I feel like shit.
I know that I have a massively important job as his carer – I don’t need any book, website, or well-meaning GP to tell me that, but the part that no one tells you when you first start caring is that if you’re not careful the part of you that’s you and NOT just a carer will disappear. You become so immersed in what you’re doing, that your own needs just don’t come into the equation anymore.
For instance, today, in the shit mood that I’m in, I decided to have a look at why I am feeling so down…and the main reason is:
1) For the last 15 years I have nothing for ME.
Yes, I’m a stay at home mum with a slight extension of carer thrown in – oh and lets not forget wife. I don’t work – and yes I know I should feel grateful that I don’t have to for financial reasons, but actually I don’t. There is nothing in my life to excite me…nothing for me to prove myself with….that sounds lame I know. It’s so difficult to explain. I never had a career before I was a mother and to be honest if I had the choice of career now I still wouldn’t know which direction to go. Alas Paul is not fantastically supportive because he just doesn’t understand! The standard line from him is: “I would swap places with you in a heartbeat”, but I know realistically he’d be climbing the walls by the end of week one.
I have spent much of the day today looking into distance learning – I have the urge to study. However, as I am not in receipt of means tested benefits I would more than likely have to cough up the full fee for the courses I am interested in, and alas, although we are okayish financially, I cannot justify spending hundreds of pounds on a course to stop me from floating into mental oblivion!!! What I did find amusing was that if was an asylum seeker I could actually get the course for free! Excuse my french but where the fuck is the fairness in that!!!! If I had a strong passion for a certain course then maybe it would be justified, but just anything will do for now! I last did an online course back in 2004 – web design believe it or not – well how to proficiently use Frontpage 2002 actually. I passed it with flying colours and I really enjoyed using my brain. So if anyone has any wonderful suggestions on how I can dust my brain off then please let me know!
I had better go…Jack is due home in a minute, and guess what, he’s had a bad day with his seizures so he’s going to need my full attention. Sorry for whining, but it’s helped me a bit of offload it onto you dear reader hahahah!
Until next time……
