Thursday, 18 February 2016
Autism and how to understand some of the behaviours better, along with the best explanation I can do of the Triad of Impairments and how it gets diagnosed. Hopefully better understanding will lead to more acceptance and support
Monday, 15 February 2016
Thursday, 21 January 2016
Today, for the first time in more weeks than I care to remember, I finally got some of my oomph back and it feels good. Since late November, it feels like I've been hibernating in some wilderness of exhaustion, and barely able to string a sentence together on the worst days. I've had moments when I've wondered if the cancer is closing in and about to draw the curtains on me, but now I can see it wasn't really anything to do with the cancer itself, it was a wake up call that I badly needed to listen to.
It started with my joints seizing up to the point whereby my legs simply wouldn't weight bear. For about three weeks getting from one room to another downstairs was a twenty minute marathon of pulling myself along from one piece of furniture to the next and then the wall. Leaving the house was nigh on impossible, and worse than that, I was so exhausted I didn't even care.
Twitter twittered on without me, emails came and remain largely unanswered, Christmas approached in a blur of mind-fog and I wasn't even able to do very much in the way of joined up thinking. I couldn't follow TV programmes much less keep going in a book, it was like I was in some sort of shut-down mode.
The walking bothered me though. Mobility has been an issue ever since I had chemotherapy three years ago, and it's also massively affected by the cocktail of cancer drugs I've been lumbered with. I've managed to get a pretty good perspective on it though, by counting my blessings and knowing that losing some ease of movement is actually a very small price to pay for being alive and loving it. However this was on a different scale, and yes, it bothered me a lot. Eventually I swallowed my pride, went on Amazon, did the research and bought myself a walking frame.
However I didn't have the guts to tell anybody. For days. Until it got to the point that i knew it would arrive and everyone would say "Hey, what's that?" and I was mortified about having to tell them. Well if I was mortified about telling the people I trust the most in the world, how was I ever going to be able to leave the house with my head held high as if I didn't give a stuff, and wander down to the shops with a jaunty little saunter, eh?
So I blurted it out over dinner one night, and the very next morning it arrived. The family was marvellous, and I needed them because I didn't have the strength to assemble it myself although I gave it a flipping good try. They were kind enough not to laugh out loud when we realised I'd put the wheels where the handles ought to have been - no wonder I couldn't get the damned thing to push properly on it's maiden voyage between the dining room and the kitchen. Once they took over and put everything where it's supposed to go, everyone rallied round to be as upbeat and cheerful as possible about my new little purchase. Have you ever seen anyone skateboard towards the front door on a walking frame? I have. Hilarious, and they did their best, but it still hurt like hell and I was still too proud to really let on how close I was to dissolving into wretched tears about the whole damned thing.
I've done it though. I've been out in public with it several times, and eventually I'm learning to develop yet another new perspective about it. I have a choice - either go out and be a part of the world with a helpful piece of metal on wheels, or become a housebound hermit. No brainer really, and one day I might even love it.
A few days before Christmas things started easing. I was able to get up and downstairs without crawling or bum-shuffling. Wow. It felt wonderful. I could nearly walk all the way to the kitchen from the front door without having to stop and catch my breath. Fantastic.
Things went from good to better for three whole days, long enough for me to do speed-shopping on Amazon for presents, and then I got ill all over again. A cold turned to a chest infection and lingered for for four full weeks, determined to put me in my place and make me come to some pretty life-changing conclusions. At least with the chest infection the brain fog cleared and I was able to think. I was even able to read and managed more books in less than a month than I got through in the whole of last year.
The thinking - now this is the exciting bit. Pennies started dropping, lightbulbs started lighting, and everything became loads clearer and much more possible - life wasn't over, but it has to be done a little bit differently to make sure I don't ever hit quite such a wall of exhaustion again.
So what have I learnt? Lot of things! Here are just some of them.
1. I've got secondary breast cancer and I'm not 22 anymore. So kidding myself that I can cope on 5 hours sleep or less a night isn't going to work long term. Some days over the past couple of months I've slept for over 15 hours in one stretch, because I needed to. I've even worked out that I'm more productive and can get much more done without having to stay up half the night to achieve it.
2. I've been doing too much, taking on too much, and I've worn myself into the ground. 2016 is the year I'm going to learn to say no sometimes.
3. I'm very clear about what I want to do to improve things for the next generation of vulnerable adults and children with special needs and their families. I'm much more focused, I'm working on a business plan, I'm redesigning my website, and I'm looking into starting up a Social Enterprise business to put things on a much more solid and settled basis. That way, one day there could be a team of people working with me towards the same purpose and I won't have to do everything all by myself. One day, if it goes well and I'm no longer around to do the work myself, other people could carry it on.
4. I need help now to cope with all the admin. So I'd like to introduce my first helper, my wonderful daughter, Francesca, who is going to take on one or two of the projects we want to achieve. We're working together for a few weeks to see how it goes, and so far I'm loving it and I hope she is too.
5. Shoes. I love them, but finding ones that fit now my feet have spread to the size of dinner plates is not easy, and nor do they make those sizes with high heels or in bright shiny colours. For the past two years I've only had two pairs of shoes, one for winter and one for summer, simply because I'm such a funny shoe size now. So I spent a whole afternoon on line, I found some specialist shoe shops, and I ordered and ordered and ordered. So exciting now to be the owner of 5 pairs of brand new shoes that all fit and don't pinch. OK so they all look just like the sort of convent-issue shoes that the nuns in The Sound of Music might have worn, but maybe I'll start a brand new fashion.
6. I'm a writer who is massively into social media and who may have a limited time left on this fabulous planet. So why have I been working on a limping old clunky PC that takes what seems like a lifetime and a half to open pages and crashes several times a day? I've been telling myself I can't afford anything better, but the truth is I can't afford not to. So I'm now the proud owner of a state-of-the-art laptop that whizzes from screen to screen in a nano-second. Consequently I'm buzzing along too and able to work much more efficiently and without the tearing-my-hair-out technological frustrations I've been coping with for the past two years.
7. The laptop is a shiny bright red. So are my new pair of Christmas furry slippers. They nearly make up for the nun's shoes. It's so last year if your slippers don't match your laptop, don't you think?
8. I've read and I've read and I've read. Among the novels that I needed to take me away from real life as respite, I've read business books and cancer books too. Radical Remission by Kelly A Turner has changed the way I look at everything. It's helped me start to think about implementing new ideas which just might increase my chances of staying alive a good deal longer. I'm already on borrowed time. When they discovered my cancer had spread my prognosis was to live for another 26 months. That date came and went over 6 months ago. With the help of this wonderful book, I'm now aiming to extend that original 26 months into another 26 years. Yay.
9. Whether I make it or not is immaterial. What's important is that I'm still here, I'm still alive and I'm still taking part in a hundred and one different things and living life to the full. Over the past few weeks I've had moments of doubt about whether or not the grim reaper was lurking. Well I'm pretty sure he's gone away for the time being at least. But I'm not going to make his job easy by twiddling my thumbs and waiting for him to come back. He'll have to wait for me. Ha!
10. Working and trying to change the world is all very good, but life is about having fun and spending time with people we care about too. Pacing myself and having some balance is vital, and I've been guilty of throwing myself headlong at everything over the past year or so - it's an easy trap to fall into when you think your days are numbered and you feel there's so much to do. I've still got goals I want to reach, but I'm now more likely to stop for a coffee on the way.
If you are one of the many people who have been waiting weeks for an email from me please accept my apologies, and I'll be in touch again very soon. I'm back now, and raring to go, but at an ever so slightly slower pace. You might even get to meet Francesca and my walking frame - I really must find a cheery new name for it.
Are you on Facebook? If so, have you seen the
Coke Floats & Chemo Facebook Page, offering support, information, news and hope to anyone coping with cancer, sharing the best relevant posts nearly every day?
I also have another Facebook Page called The Special Parent’s Handbook. It’s full of information, advice and support for families of special needs children