Hinky Tinky

I have always been a bit what my friends like to call ‘Hinky Tinky’.

I have crystals around my house, I drink apple cider vinegar with the mother and I use essentials oils. If the weather is appropriate I will moon bathe on a full moon and I always pray to the universe… god… whatever you choose to call it.

Don’t get me wrong, I appreciate how utterly ridiculous it sounds to those who aren’t into that kind of thing. I respect that and I don’t ever throw it in people’s faces. You do your thing and I do mine.

My friends love to take the piss out of me for it, but tell you what - they all come running to me when they are ill or emotional! (And a few have even been known to come for a moon bathe with me).

This is the thing I’ve realised about all this Hinky Tinky stuff I like to do. It has no negative effects.

No side effects.

No health risks or risk of harm.

It just is.

When it comes to N and the symptoms of her disease, there is a lot of research being done by doctors. Lots of trials being made to see if they can reduce certain symptoms or “cure”/reverse Retts.

This is fantastic -  of course it is - and I want to make it clear I am not against any of it. Hooray for researchers and scientists! 

But here is my sticking point. 

We all want instant results. We want a fix. Ultimately we want it to all go away.

Take a headache for example, what tends to be the first thing we do when we have a headache… reach for the paracetamol or maybe the Nurofen? Why? Because we associate it with instant relief. The pain goes and we can carry on with our day.  But paracetamol isn’t that good for you, neither is Nurofen for that matter. Have you ever read the side effects? (Do, it's kind of fascinating.)

But we rarely look at the reason why we might have a headache in the first place and try to change something or do something to support our bodies. I mean the obvious would be drinking more water.

As I mentioned in my previous post, the doctors don’t really have any answers when it comes to N - we are in a grey area. I mean there is no magic pill to fix this. It is who she is. Right through to her genes.

The first thing they do is look at some of her more serious symptoms and see if there is a tablet out there that “might” help reduce the said symptom.

Niamh has the most outrageous breathing pattern. She holds her breath a lot. She could be a pearl diver when she’s older. And for most people, it is the most unnerving thing to witness.  She also does a heavy breathing thing, which is kind of like hyperventilating but not. 

There are trials going on for a medicine to try and stop or reduce this situation. Which is great. BUT. There are reasons and situations, which make N’s breathing bad, and others that reduce it, without any medicine at all. These situations are social and emotional. 

Can you imagine not being able to get across how you feel or what you want particularly effectively or at all for that matter? Imagine asking your legs to walk or your hand to pick up the spoon and nothing happens, or even worse something else happens like your arm juts off in another direction?

It would really fuck with your head, wouldn’t it? I mean I don’t know about you but my anxiety would go through the roof and I’d feel out of control and worry a lot. I’d also get frustrated and stressed and angry. I’d most probably have a panic attack and my breathing would probably get out of control. Now I don’t want to say I know but I bet N feels the same way. It’s human nature. 

I’ve noticed that if you make sure N is seen - if she knows you are there and engaged and reading to her and listening and letting her know what’s happening, just as you would with a kid that could ask the questions. Her breathing pattern is much better. It is reduced… HUGELY.  The kid just needs to feel relaxed. And feeling relaxed in a body that doesn’t do what you want? That’s a tough ask!

So here’s where I get really “Hinky Tinky”.

There are a lot of natural things out there that can reduce stress/anxiety. And others that heighten those negative feelings.

The obvious place to start is with food again, you want to give a kid anxiety? Give them sugar. Give them refined food.

Food is an incredible thing; there are a lot of foods out there that help reduce those feelings; fatty oily fish, vegetables and fruit (bananas are the dreeeam!), eggs, the list could go on and on.

Essential oils are a firm fave in our household. Everyone has heard of lavender and its relaxing qualities! Rose Quartz, yes, the pink gemstone. It promotes love and peace. And is also used for healing anxiety. We have it everywhere in our house.

Because fundamentally even if you have doubts about what I’m saying, this doesn't have any risk of negativity or bad side effects (unless you stand on a stone barefoot). So why wouldn’t you try it?

Our other go-to that we couldn’t live without (and I say we because I suffer from anxiety and stress too) is CBD oil.

There is still a lot of stigmas that go with this. And I cannot stress enough how it is not what you think it is! It doesn’t make you stoned and it doesn’t have any negative side effects at all. It has so many health benefits that even if you don’t suffer from anxiety it should be added to your daily routine (of course this is purely my opinion founded on my own heavily researched journey).

We use a brand called Charlotte’s Web. It’s the best out there and they are the only people we use. I wouldn’t go anywhere else. Their knowledge is of the highest and their story of why they make CBD oil is outstanding. I recommend you research and read about them.

Not only has this helped with N’s anxiety and therefore breathing but it has also helped with her muscle tremors.  Some children with Retts have muscle tremors - it looks very much like cerebral palsy. Since being on CBD N’s have practically gone. In fact, you wouldn’t notice them at all.

We had a meeting last week with all the people on N’s specialist support team (speech and language therapist and such like). Just an update really so everyone knows how she is and how she’s progressing. At the end of it, someone came up to me and said: “whatever you’re doing, keep doing it because it’s clearly helping brilliantly.” 

And you know what? I think so too.