About me and my blog

This is just me.

now 49 years old -no it’s 51 now.

Mam of 4 brilliant children – daughter 23, and 3 sons aged 22, 15 and 13.

Married to long suffering  Jimmy for 26 and a half years.

Have had chronic ill health for years, which led my husband one day, while trying to make me feel important one day ,as i lay in pain on the sofa,  to compliment me with “well- at least you have a brain!” – We HADN’T realised the irony, as much of my poor health has eventually been explained by my brain DEFECT!

Am a chiari-malformation owner…and a brain surgery survivor!and NOW i am disabled…properly. Wheelchair novice and discover disabled issues.

I am one of the people who has to speak up….say what the others think. Honest and that is not always easy.

THUS the blog.

Love music ….listening to it…playing it….arranging it….singing it….directing it and writing it.

Tweet – a little bit too often!?


in a nutshell am direct, honest, hardworking and driven.

blog about my life…

and its challenges…

even on my most crabbid days…

as it says “warts and all”…


oops…  I’m becoming so aware of the awkard bits of being disabled, and i care about them – so am an #IZambassador – anyone can use my code HELENIZ15 on their site for 15% discount on IZ– adaptive clothing for disabled people by disabled people site!  #IZcollection site





  1. Just came across your blog, following a search, following on from listening to your son’s impressive interview on John Murray last week. I am a mother of 3, and our middle child (a boy, almost 8) has just been diagnosed with Asperger Syndrome. I’ve been pretty certain he has it for years, but it took time for it to be obvious to everyone else too, including professionals. Feeling a bit overwhelmed as to where to start, we have so many areas to address, but listening to Fionn and you was really encouraging. My son is often very “emotious” these days, but not good at expressing that in words. I hope that, some time, he will be able to express his feelings as clearly as Fionn. Just wondering if you have any words of wisdom as to how to introduce the idea of Asperger Syndrome to my son? I’ve looked at books that do it, but feel they aren’t specific enough to HIM. Should I just describe it in terms of how it affects him, in my own words? I have ordered a book called “The Red Beast” to help us deal with anger outbursts, and wonder if reading some of that with him, along with chatting about his other difficulties, might be the way to go. I’m uncomfortable with keeping him in the dark, and I think his older sister could do with a way of understanding him better too, but I haven’t found a book that really describes AS in terms I think he can handle.

    • i put a blog in about how we told fionn, a few weeks ago.
      I had never really thought or planned a how and when…
      but he was upset about a confusing issue in school – which he didnt get…

      and i tried to make it as casual as possible, wired differently, when you get upset its because they all do things one way and you don’t you think differently BUT you still get things done…and try to keep it as simple as possible..asthma, brown eyes, left handed, aspergers…just a different way of thinking.
      and name all the geniuses who have had it…einstein, mozart…

      we did shortly afterwards then explain situations about being – that was your aspergers thoughts…what else could you have done??

      dont know if this helps at all?
      just how we tried…

  2. Hello Helen,

    I came across your website awhile back while researching Syringomyelia and Chiari Malformation,

    I too have Chiari Malformation type IV, Syringomyelia, Myasthenia Gravis, Muscular Dystrophy(FSH), Coats disease(uncommon rare blindness disorder,monocular vision) and my deafness is related to my MD to name a few of my rare illnesses.

    I find it interesting how you’re pretty honest and straightforward about things on your blog as you pretty much remind me of me in some ways!

    I was also given 3 or 4 years to live and they said I would never walk,talk,bake or communicate or do much at all, Today I defied the 3 or 4 years to live and I’m able to cook,bake walk/talk but unable to hear or see as well as some others but I am still hanging in there and I have found major relief on using the Gluten-Free/Casein Free diet another researcher I know did up along with Medical Cannabis use.

    You may find some more information about me at these links

    Hope some of this information will help you on your journey as it has super helped me on mine and I used to be on 50 pills a day over 25-30 different prescriptions and hit remission about 3 years ago for most of my illnesses and I currently take ZERO medications.

    You may feel free to contact me at no-spammonkey@start.ca if you like for future reference. (omit the no-spam part)

    Have a very good day.


  3. Hello.

    I’ve nominated you for the Very Inspiring Blogger Award on my latest post.

    I don’t know if you’re into such things (it’s OK, if you’re not). Just so you know: by this I mainly wanted to express that I really like to read your blog (I’m also simply curious about 7 facts about you).

    Thank you for your great blogs posts!

  4. You’re not alone!!! I read your About Me and My Blog and you and I are the same, well, except you have 1 more kid. Everything else is the same. I’m 51, married 26.5 yrs, 3 kids, disabled, chiari!

  5. I stumbled across your blog whilst trying to discover the cause of my left eyebrow droop and we seem to have an awful lot of similar issues, though I have yet to be formerly diagnosed with Chairi, but I am the owner of a symptomatic brainstem cavernous malformation 🙂 Out of curiosity are you familiar with Ehlers Danlos Syndrome Hypermobility Type? If not I highly recommend you check out http://ehlers-danlos.com/

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