Moving Forwards

I was trying to remember a quote today, something about however slowly you are going, you are always one step ahead of those who aren't trying.  I could look it up on google, but then I'll get sucked into clicking on more links and more links and find myself horribly distracted and end up on Pinterest or something.

I'm struggling at the moment, if I'm honest.  Loitering just the right side of depression and I'm very aware of the fact, which is a good thing.  I've had a childfree weekend, which has been needed, but it's also been one where I haven't seen anybody either.  Those weekends are pretty rare these days, usually somebody will pop in for a cup of tea, even if it's just an hour during the whole weekend, it's enough to stop me feeling totally alone in this life.

I feel like I am not moving forwards with anything, like days and days go by and it's just all about survival.  Surviving the nightmare that is my son's Tourettes and his continuing meltdown.  Surviving, just, financially, praying that I don't have to move out, praying that the washing machine doesn't go wrong, or the car doesn't break down, or the gas bill doesn't go up yet again, praying for strength and motivation to believe in myself when there just isn't anyone else to turn to when I so desperately need someone to tell me that it's all going to work out and be ok.  Wanting so badly to find a way out of this hole and find a safe place to stop for a while and catch my breath.

I did come across this quote just now, while I was quickly flicking through a book on inspiration:-

When nothing seems to help, I go and look at a stonecutter hammering away at his rock perhaps a hundred times without as much as a crack showing in it.  Yet at the hundred and first blow it will split into two, and I know it was not that blow that did it, but all that had gone before.     (Jacob Riis)

 

The more times I read it, the more it seems fitting today somehow.  Like the Universe just telling me to trust and have faith that everything is under control, and it will all fall into place one day soon.

 

I've been slowly working on the diet and exercise stuff.  It's a bit hit and miss at the moment.  My boy's shouting and his own inner torment is sapping all my strength and eating away at my soul, and I'm reaching for comfort food despite knowing that it's now more than ever I need proper nutrition.  I've restocked the fridge with smoothie stuff, ready to start afresh tomorrow, and done tons of research looking for fun recipes for new smoothies and salad dressings.  Have even joined a zumba class with my daughter - a strain on the finances, but it gets us both out of the house for some rare and precious mother/daughter time, even just for 45 minutes.

 

The ear plugs arrived.  It's been a childfree weekend, so no opportunity to try them yet.  Hopefully they'll help a little, though it won't stop me fretting about the neighbours, nor stop me wanting to hug my little boy tight and make it all better for him.  The really rubbish thing about this disorder is that I can't get close to him most of the time - his body is rigid and soaked in sweat and lashing out.  It's quite awful. 

 

I guess I am still moving forwards, a tiny bit each day.  I happened upon the blog of Shane Burcaw a couple of days ago too.  A young man in a wheel chair who has a muscle wasting disease.  He started to write a blog called 'Laughing at my Nightmare' http://laughingatmynightmare.1000notes.com/.  It's funny and heartbreaking and so inspirational and makes me feel very humbled to be complaining about my lot.

 

Right.  Enough feeling sorry for myself.  Imagine what his parents are going through on a daily basis? 

 

 

I can do this.  Just one day at a time.

 



Tough days

It's been a tough few weeks.  I always get into a bit of a funk in the school holidays.  I love them, of course, but I find it really difficult to motivate myself when the structure and routine of a normal working week are not present.  Add on a much-calmer-but-glued-to-the Xbox teenage boy and a daughter at work most of the time, and serious lack-of-adult-conversation funk sets in.  Add on relentlessly arguing siblings when they are in the same house together for even a minute, and I'm verging on insanity.

In the midst of all that, we got an appointment, at long last, to see the Tourettes specialist.  It was good and bad.  Finally we have an Official Diagnosis, and finally CAMHS are now sitting up and taking notice, and our next appointment to discuss treatment is in 2 weeks!  All good.  Not so good is the fact that the Swedish doctor was a little forthright in her approach.  In the space of ten minutes she had told Milo that he has Tourettes Syndrome and that there is no cure, she would be ringing the school the next day to involve them in treatment strategies, and she was enrolling him in Group Therapy from September (not sure how that can possibly help 6 months on from now...but still...)

Cue one major meltdown for one very troubled small boy.  His worst fear, just the worst thing he could possibly have imagined, was the school finding out and treating him like a 'freak'.  I did, in fact, tell the school nearly a year ago, but I hid that from Milo.  They were brilliant in also hiding from him the fact that they knew, but monitored him from a distance.  Next major fear was group therapy.  None of us are the 'group' kind.  We're introverted and shy and not particularly comfortable around lots of people.  My daughter and I are pretty independent and happy in our own company - we'll go anywhere and do anything by ourselves - dance classes, trips, evening classes...but the whole social thing...hmm....we do it if we have to, but will escape it if we can.  For Milo...the very idea of it ...well, he'd rather chop his arm off.  Top it all with having to face the fact that he has a disorder for which there is no cure...wow....that's a helluva lot to take on board in one go.

I just hope this doctor knows what she is doing, because for six days now, my poor son has been in a meltdown, even the Xbox isn't working on keeping him calm.  His tics have trebled in volume and frequency to the point where I can go out of my garden gate and to the other side of the car park and still hear him as clear as day.  I'm feeling bad for the neighbours - we have paper thin walls, and if I press my ear to them , I can hear their conversations.  They must be almost as stressed as we are, and I'm dreading the doorbell ringing.

I've ordered us some ear plugs today.  I don't know what else to do right now.  I know he can't help it, I know that, but the urge to scream is overwhelming.  I'm trying to stay in control and keep calm, and keep telling myself that this will pass, but I want to curl up in a ball and howl - the stress of the noise, the heartwrenching sight of his contorted little body, his poor little broken heart.....it's too much right now.  Am just praying for the strength to get us all through it.

On a positive note, I've made a smoothie for breakfast four days in a row now.  No other dietary changes yet, I don't think I can cope this week with going back to work aswell.  A childfree weekend on its way though, hopefully chance to restore some balance to my troubled soul.

Holidays

It's the Easter holidays, which for me started a week early after I hurt my back at school.  I'm loving the break from work, the long lay-ins, the freedom to come and go as I wish, but must confess to feeling a little bit lonely at times.

My daughter is working a lot during the holidays, which is absolutely brilliant.  It stops her getting bored, puts some money in her pocket and above all, keeps her and Milo from arguing constantly.... but I am missing her a bit.  Milo has bought himself a pre-owned X-Box - something I've always been adamant I would never let him have, fearing he would turn into a zombie child, or worse, it would make his tics even more violent.  I have to say, that generally, it feels like a heaven-sent gift.  He is occupied and happy, happy, happy to be able to connect with his friends without having to wait for them to be allowed out.  He does get a bit overexcited when he plays some of the games, and then we have some major tic sessions, but overall, particularly when he is hooked up to the microphone, he is much calmer.  I was dreading these holidays, if I'm honest, but so far, they have been quite wonderful. 

On the downside, I am craving some adult contact and conversation, and finding that my oomph is starting to wane a bit with regards to Getting My Life Sorted.  The fact that it is still so bitterly cold here, snowing again tonight, means that the new smoothie diet is taking a while to catch hold - I've shivered my way through them for four mornings (not consecutive), but my perfectionist self has been thrown by 'life' getting in the way again.  One morning I had an early osteopath appointment in the next town, so shunned the smoothie as I didn't want to be desperate for the loo while he was manipulating my back!  Today, my ex hubby decided he didn't want to drop Milo off to me, so I got a last minute text from him asking me to collect from his workshop...like...now.  He does that, my ex, still likes to control my life, despite the fact we have been divorced for ten years.

Anyway.  The point is, that I could have made healthier choices...made the smoothie for lunch or a late breakfast on those days, instead of reaching for the cocopops and tea...but I didn't.  The healthy choices haven't yet become a habit, but I'm not beating myself up about it.  Friday is shopping day, and I have a childfree weekend where I can kick start my motivation again.  It is the holidays after all, and there is no routine and it's far too flipping cold to do anything except huddle indoors or cosy up in a coffee shop.

I picked up a magazine in Sainsburys yesterday.  There was a double page spread featuring my dream house.  I haven't written a blog post about my dream house yet....I think about it all the time, and obviously it changes as I come across things that I love etc.  This house I saw yesterday though is as close as I've ever found.  There is the small matter of the price - £875,000 - but apparently the Universe doesn't worry about limiting details like that, so I bought a lottery ticket tonight and have been planning my vegetable garden....