Monthly Archives: June 2022

Nystagmus Awareness Day 2022

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Hello all,

Happy Nystagmus Awareness Day!

What is Nystagmus?
“Nystagmus is a complex eye condition, characterised by involuntary eye movements, from side to side, up and down or round and round. This affects the ability to focus, see the world in three dimensions and recognise faces.” Nystagmus Network.

How does it affect me?
For people with Nystagmus they have something called a null point which is a point at which they can hold their heads to reduce the amount of wobbling their eye does. Nice and simple… not really. It doesn’t stop the eye from wobbling and for myself this causes other problems, linked with Scoliosis.

If I have to hold my head at a certain angle to be able to reduce the eye wobble and try focus on something my neck will start to hurt. Which then spreads into my shoulder and then my back. This null point is not in keeping with what my posture needs to reduce the constant pain of Scoliosis. Therefore I just have to make the most of a bad situation.

How I see.

One thing which I think people would be interested to know is, what does the world look like to me? 

See the difference? It is as though there is constant motion and nothing ever stands still. I describe it to people like this ‘Imagine you have a terrible headache and you are stood up on a roundabout which is spinning. Then add to that by having to move around on the roundabout and stay stood up.

Does your head hurt? I know mine does.

Another problem for those of us who have Nystagmus is that we struggle to recognise faces. For children this can be stressful because if they can’t locate their parent in a crowd, they become stressed or panic.
This problem of recognising faces does not go away or improve as you get older. When I am out meeting friends I cannot see them until they are a few feet in front of me. Even then I may not be able to tell it is them.

How can you help someone with Nystagmus?
You can send them written information in formats they find accessible, meaning large font, or in a preferred colour. You can let them know in advance what coloured jacket you are wearing when you meet up. Or say exactly where you will meet them.

If you have any questions about Nystagmus you can drop them below and I can answer from my own perspective. Please check out Nystagmus Network for more details.

They have a wealth of information and they are really beneficial.

Remember you can follow me on Twitter @PhilippaB.

Scoliosis and Community

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As it is June I will be writing another post about… you guessed it… Scoliosis Awareness.

I have only ever met 3 people who have the condition. One of them is a friend of a friend. The other is a person I know through work. They are both really lovely and it is nice to be able to speak to people who have Scoliosis as it can be quite lonely at times.

It can be lonely because people don’t always understand when you say ‘my back hurts’. People may respond with ‘oh… mine too’ or ‘have you tried Pilates?’ Please don’t do this when someone who has Scoliosis or, any chronic condition tells you their back, or something else hurts.

My spine hurts because it is so curved my spine curves into my shoulder blade. It doesn’t go underneath but it goes rather close.

The other person I know who has Scoliosis is my Mum. Her spine is not as curved as mine, but it’s still curved.

As not a lot of people know about Scoliosis is can be quite lonely. This is why it is important to share our experiences. So we can raise awareness and allow people to feel less alone.

This is important because it helps reduce the negative impact on your Mental Health. If you know there are other people out there who have the same condition as you then you can talk to them. Talking about things like diagnoses, pain management or even just activities you enjoy which are low impact. I joked with the person at work about the gym and we were both just like ‘nope…. Physio exercises are enough thank you’. These little things really do help you to feel less alone. 

If you have stumbled across this blog and you have Scoliosis please follow me on Twitter and join the community of Scoliosis Warriors. 

Scoliosis Awareness Month Ouch

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Hello all,

Hope you are all well.

June is Scoliosis Awareness month and it true fashion my back has been hurting a lot more recently.

One of the things I need to do is get some more sport massages booked in. They are very beneficial to my back and mental health. The massages really release a lot of built up tension which causes me to be in pain.

The past few weeks I have been trying to do a few more different exercises on top of the normal stretches I have been given by my physio. The one which I am working on is arm and leg raises. It is quite difficult because I also have Dyspraxia so my balance is not the best. Doing these exercises helps with my back pain and helps my balance. So that’s two problems being addressed in one.

Doing the exercises in the long term will help to improve my core strength which will allow me to cary myself better. This will then mean I am using all my muscles, so that I am not over reliant on just the one side of my body.

In the short term it is causing me more me pain as I get used to my back having to work muscles it doesn’t normally, due to my scoliosis.

In the long term it will be better because the muscles are being used more and more. Helping me to stand up straighter, build strength in my shoulders and hips. I know it will be beneficial, it just really hurts.

The exercises along with the sport massages will help me to feel more comfortable, more relaxed and less tense. Reducing my pain and also improving my mental health.

Do you have Scoliosis or suspect someone may have it? Don’t be afraid to ask questions. Go to your doctors and ask that they check to see if the person has it. The person will be asked to stand up as straight as they can, then asked to lean forwards. This will allow the Doctor to see if the spine has a curve or if the shoulders are not straight.

If you want to seek any advice then check out Scoliosis Association UK.

I am on Twitter @pbarraclough