Feeling Frustrated

I’m not sure if I told you but Jono had an x-ray a couple of weeks ago. As well as the scoliosis issues he now has facet arthropathy. I had no idea what this was but I do know, thanks google. So it’s time for me to start shouting again – why hasn’t he had pain numbing injections since January? Why are we still waiting for the OT to contact us? Why hasn’t he been seen by a consultant in over a year?

It’s so bloody frustrating and I can’t begin to imagine how Jono feels, but it’s no wonder he looks grey in the face. Maybe if he ever gets the treatment he needs he might be able to have some kind of life again. He couldn’t come out with us for Andy’s birthday because he wasn’t well enough so Lucy minded him. He can’t go to Dublin to see his friends anymore. It’s just a desperately sad situation that a 25 year old shouldn’t have to deal with.

Anyway it’s time for me to start rattling a few cages, I seem to be quite good at it as I’ve noticed recently. God help the poor people who have no one to speak up for them.

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Gently Drifting

I’m still demented with insomnia, I’m back on the magnesium again to see if I can get sleep. I’ve left the phone downstairs, kept the lights down, tried listening to relaxing music, tried meditation, tried breathing and goodness knows what else but I still can’t sleep!

 

Today I went along to have a reiki crystal healing treatment at Gently Drift with Teresa McCabe. I’ve had reiki before but I don’t think I had them with crystals. Teresa is based at the Hair Lounge in Caltragh, she has a gorgeous room there, full of colour and calm. I could feel myself relaxing the minute I stepped in there.

I filled out the treatment form and was made comfortable on the couch. Teresa explained what she was going to do, it was all very calm and I felt safe and secure. Firstly a pendulum was used to see where there were issues and corresponding crystals were placed on my relevant chakra points.

The first thing I noticed was a feeling at the top of my head – like little sparks coming off me. It reminded me of when I was a kid and a cat was put on my head – but that’s a whole other story! Then my left shoulder got really hot and my left hand started tingling – without Teresa going anywhere near them.

What amazed me most was the heat coming from Teresa’s hands – she had them hovering over me and it was like being on a sun bed or having a heater over me. As my eyes were shut I could see colours: white, purple, green and blue flashing. It was hard for me to relax but that’s normal for me, I did stay still though and I really enjoyed the treatment.

When it was over I felt very calm and relaxed and I’m absolutely shattered tonight – so maybe I might sleep! Teresa suggested I wear something red to keep me grounded – I don’t think she had a lobster outfit in mind though!

 

Thanks so much Teresa for your healing hands and calming way, this was just what I needed. You can find Gently Drift here.

I’m a cover girl!

Well what an exciting day, I can actually say I’m a cover girl on a magazine. Now I know some people get on the front cover of Vogue or Cosmopolitan but I’m on the cover of the Migraine Ireland magazine! I’m delighted and I love the photo – Lucy took this of me and it won a prize in the Chronic Pain Ireland competition.

I have migraines on a regular basis and the magazine interviewed me about them and about my life in general. I’m delighted with the article, I hope you will be able to read it 🙂

World Autism Day

Today is World Autism Day. I don’t usually write about autism but I thought I’d share our story. Jono, my son, has Asperger’s Syndrome which is a milder autism spectrum disorder. Of course autism is one of the ‘hidden disabilities’ so people may not be aware.

Jono wasn’t diagnosed until he was 13 years old even though there were various signs – late to walk and talk, strict routines, not great at social interaction, motor skills and sensory issues, fixated on certain topics, over sensitive to noise, smells and situations and more.

We had thought for years that something wasn’t quite right but were fobbed off. The primary school told us Jono was just immature, the health care workers said because Jono was our first child we were overreacting. Others said it was because Lucy was a girl and therefore quicker at picking up things and that we shouldn’t compare.

Jono started secondary school – where there was a fantastic head teacher who knew straight away something was amiss. We knew for sure ourselves then because the new school threw him completely. Assessments were done and Asperger’s syndrome was diagnosed. Finally he got the supports he needed in school – although everything was a battle.

In those days there wasn’t really a whole lot of support for people with mild autism. It was either a main stream school or a school for children with special needs. To be honest none of them were suitable for Jono. Things seem to be changing now with a lot of schools having dedicated units for those with autism. Some of the shops have ‘quiet’ hours to make thing easier for shopping.

As I get older I’m convinced I’m somewhere on the spectrum myself and my dad certainly was – although not diagnosed. Some people might get a shock when they receive a diagnosis of Asperger’s but to be honest it doesn’t change who the person is. Jono is highly intelligent, has a fantastic memory, is amazing at planning trips, has a brilliant sense of humour and so much more.

If you are looking for help I’d recommend the books by Tony Attwood – so easy to read and answer so many questions.
Autism Ireland were of help too.
AsIAM is a new enough site but very informative.

Happy World Autism Day – I think I’ll have cake to celebrate.