One of the areas I frequently blog about is Scoliois because I am living in constant pain. The pain does vary day to day, but it is always there.
At the moment I am sat in my comfy chair whilst trying to rest my back. I am wearing 3 layers, one if which is a long hoody which is quite fleecy. The chair has a throw over it so no cold air can get in where the arms of the chair are. I am considering putting my dressing gown on. Hang on…I have my dressing gown on now.
One of the problems I have mentioned before is the change in the weather causing me to have long periods of pain, mostly occurring more profoundly over the winter months.
I wish more people understood chronic pain. I wish people understood that I take painkillers on a daily basis because that is a way for me to manage my pain. I wish people understood that I do go to physio and I do have a sport massage to reset my muscles. I wish people knew I can’t just get on with it without adapting my day to suit my pain.
Chronic pain will always be there no matter what I do. Also just because you have the operation done to correct a curved spine does not mean that the pain will go away. It will still be there in some form.
For those of you living with the impact of Chronic Pain, remember you are not alone. Your frustration and anger surrounding your pain is completely valid and I also know that hearing this does not make it any easier.
Knowing what can make it easier? I really don’t know. This blog was just written because I am having a pain day and wanted to write about it. I wanted to share my thoughts to get them out there. Scoliosis is a difficult thing to live to live with. Especially when you were told as a teenager it wouldn’t get any worse and you probably don’t need the surgery…then when you’re in your twenties you’re told it is severe…. What are you left with? Anger… frustration… sadness…. But hay ho…. We carry on.
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.
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.