Keep calm and put the kettle on…

160 mile round trip today to get the news that we knew was coming. There isn’t much more the medics can do for the kids feet. They have what look like pensioners feet: Covered in bunions, freezing cold and contorted from malformed bones. They work, the feet, they actually do what they are supposed to do but they are a bit ‘bargain basement’, you know…a bit rubbish with no longevity but nothing else is available (like shopping for munichies in some soulless grocery leviathan at 3am when you’re drunk), crap but you need them.

Shortly we’ll be moving to a bungalow and the tortured Hell that is a staircase shall be no more!  So it’s not all bad, lovely new home on the horizon (subject to contract!!), Yuletide festivities looming and tonight we have pudding! Now, I just have to make it to Christmas Day without throwing a brick at the John Lewis orgasmic consumerist pornography advert…then all will be well!

Don’t sweat the small stuff…focus your energy wisely.

It’s a useful life mantra. Yes the house is a mess, the kids have put jam in the toaster, there’s wasps humping every light bulb in the house and I haven’t brushed my hair in a week…but it’s ok. I have a roof over my head, I have the use of all of my limbs and there’s a tea caddy full of tea.

When the future looks bleak, grabbing any pleasure is paramount. Just to be able to say, hey I’m (surprisingly) still alive even though I’ve eaten enough butter in my life to kill a blue whale, is a good start! 

My son is going blind and deaf and my daughter won’t be far behind him. They are loosing their balance, stamina and general mobility 

So my focus is on them and making their life fabulous. Making every second count. 

Do I care that there’s six loads of washing to do? That there’s moth holes in all my clothes? That my dog has stolen my socks? No. In fact I can safely say I don’t care. The zombie apocalypse could be in full flow and I could be merrily swatting the undead with a well chosen golf iron as long as I had a hot water bottle and a bottle of Chateaux Lefite to look forward to before bedtime (alright just a bottle of Malbec then!)

I don’t sweat the small stuff, what ever I have left in energy I just want to use to make the kids happy. Yesterday we went to Hampton Court gardens near Leominster, they put on a beautiful firework display that the kids absolutely loved. The great thing is, because the fireworks are against a black night sky, Fergus can see them! He could even see the colours! The joy on his face was awesome.  Now that’s something to invest energy in!

Hello darkness my old friend…

The clocks have gone back one hour and now instead of being up at 6am, I’m now up at 5. I wouldn’t mind but the only TV on at that time is 20 channels of unfeasibly beautiful Americans selling living room contraptions for us fatties who don’t like sweating in public. 

How about a bit of fuzzy feel good TV at that time of day? Top of the Pops? Bagpuss? He-man? 

Then I can pretend it’s 1985 again, I’m a weird scruffy tomboy and the only things that concern me are ponies and fondant fancies. 

Those were the days! I would never have imagined I’d eventually end up here, living in a strange alternate reality to the ‘normals’. 15 years of changing nappies, watching Cbeebies and never growing up. We seem to be caught in a time loop like Miss Peregrine’s peculiar poppits! In a world of the eternal toddler!

Well I suppose as long as there’s plenty of tea and the BBC don’t put on that distinctly sinister florescent pom pom vom fest, ‘The Tweenies’, I think I can just about manage to bring myself to acknowledge the morning in due course. Tea! I demand to have some tea!!

 

Life hacks: coping with nausea / morning sickness

No, I’m not pregnant again….But after the family recently suffered a bout of Norovirus I was reminded of how horrible sickness is and how debilitating it can be. 

So I thought I’d share a few of tricks I learnt when I used to suffer from terrible morning sickness.

1. Brush your teeth in the shower. I gagged everytime the toothbrush went in my mouth but if I did it in the shower, I didn’t gag. I think maybe the water on my head was distracting my brain. Anyway it worked for me! 

2. Dab a few drops of pure peppermint oil onto a handkerchief and keep it with you. Every time you have a wave a nausea, hold it to your nose. This helped me enormously.

3. When a wave of nausea hits, seek fresh air immediately then recite names of something you’re knowledgeable in. For me it was flowers. I’d stick my head out of the window and call out flower names! My neighbour’s probably thought I was mad but it worked! Again, it distracts the brain.

4. Now this might have just been me, but I found sweet black tea or Bovril were good hot drinks to drink gently after any vomiting. 

I really hope this is a help to some of you. 😊

It’s the little things

It’s that tiny smattering of joy in your day that accelerates your wellbeing from surviving to thriving. We took the kids out for an evening meal for a treat and not only was there bags of room for wheelchairs, the waitress knew sign language! Naturally the kids completely fell in love with her, asked her what her name was, then spent all night calling her over to hold her hand and just beam smiles at her! 

What a lovely lady, and what a lovely evening. Very happy kids and a memorable outing that will stay with me always. 

It’s a simple thing to learn some sign language, every school should do it. The joy it brings and the boundaries it demolishes is very powerful! 

Life after death? Yes, but not like that…

This isn’t a religious post, merely a lighthearted pondering on Life, The Universe and everything.!

Being a non believer must be very bleak mustn’t it? No posthumous celestial party to look forward to, no dancing the funky chicken at 3am with a cloud of twinkling sky fairies..

Isn’t that awfully sad? Well, not to me, no.

I consider myself a lapsed Atheist really.  I absolutely love religious architecture, stained glass windows, church yards, ancient religious art not to mention dragons, fairies, unicorns, pixies and of course Hobbits! Magic, wonder and myth swirl around many aspects of life and much of it is fascinating and often beautiful.

Some folk believe in a God and that’s cool, whatever helps you get through life being an infinitesimal spec on this tiny blue dot in the vastness of time and space…

Some people find hope and peace from having a Faith. For me it’s all about the here and now. No planning for the beyond, no living a certain way to ensure I get that ‘heavenly golden ticket’! I believe we have one life, you have to make the most of it. Basically, be happy, be kind and don’t be a dick! Don’t waste your life doing a job you hate, don’t put up with shitty people in your life, do make the most of everyday. Of course this is sometimes easier said than done but when your time being alive is limited and fragile, you have to grasp every moment! Savour it! 

Do it!…Eat the cake! Wear the sequins! Dye your hair purple! Love unconditionally, go gently when judging people & don’t read the Daily Mail! 

And at the end?

It’s not the end, just a transition.

We give our bodies back to the Earth and slowly return to stardust. 

You live on in those who you leave behind. In their memories, in their photos, videos & keepsakes. 

Body and consciousness recycled & remembered! 

You are immortal!  

Respite care saved my life..

It’s a grand statement but I can honestly say respite care has saved my life. Today, my kids are having a sleep over in a residential unit, run by the NHS. They are with their friends and are being looked after by professional nurses.

It’s a chance to relax, have a bath that’s actually hot! Actually browse in a shop! Watch an entire television programme, that I can actually hear! It’s small things like this that allow me to be me again. That break in the routine of being a carer is the difference between coping and not coping. 

It gives my kids a chance to be like other teens. What would other teenagers be doing? Sleep overs with their friends? Of course. Sadly because of my children’s condition, they can’t have sleep overs at friends houses. The only way they can experience this is by staying in a professionally staffed residential respite facility. And they love it. It gives them some independence from us and allows them to socialise with their friends without Mum or Dad cramping their style!

Sadly this respite facility is under threat. The U.K Government is slashing money to local authorities making it very difficult for them to afford these provisions. The question is, has the Government really thought this through?

An aging population and an ever increasing strain on the social care system means without proper investment, carers could loose support. What will the Government do when carers start breaking down with stress? Well, the people they care for will have to be cared for by the state and that is massively more expensive than respite!

The Government must never take carers for granted because most if us work round the clock for little or no pay. We save the public purse billions. 

Carers matter. Save our respite! 

Sunshine on an Autumn day.

We are dancing about the Sun’s golden petticoats today! The landscape is awash with a warm glow of Autumn. Everything has slowed down. Dozy wasps and sleepy livestock bathe in whats left of the Sun’s warmth. Time for hibernation, log fires and fine Whisky!