Whilst I have friends and colleagues with disabilities, I've generally been the person with most disabilities or issues to have to manage on a daily basis. Until recently.
I've always appreciated my partner, she looks after me, cares for me, pre-plans everything and takes account of every aspect of my disability. I could cope without her. I've always known how physically hard she works looking after me, physically doing my washing, cooking, cleaning, carrying me, moving me and every household task I can name. I thank h daily for all that she does for me.
What I haven't taken account of was how hard it was emotionally. My father has recently been diagnosed with oesophagus cancer as has had a tracheotomy, shortly to be followed by laryxoptomy - completely removing his voice box and with it his ability to speak. Whilst physically taking care of him is something I can assist with, and his partner (soon to be wife!) can do - I had no idea how emotionally draining it would be to see someone you love in pain, and be able to do nothing to ease it, is horrible and I wouldn't wish it on anybody.
Watching him having to adjust to life with his now permanent disability is heart reaching. He is such a proud man - years of military training teaching him that only being perfect is allowed. Years of using his voice as his tool barking orders at the marine and now watching him feel less than whole as a result of its loss, is terrible.
He feels embarrassed by the dressing on his "stoma" (the hole in his throat) and embarrassed that it results in lots of coughing and spit (as you would imagine a hole in your throat would!) and I hate it. I hate that he feels he should HIDE what's keeping him alive. Hide his trophy of surviving everything cancer has thrown at him to date.
The emotional side is by far the hardest part of living with a new disability - for people on both sides of it. So take the time today - to say you to your friends and loved ones, that you apprichiate them not only for what they do for you - but for the pain and suffering they hide from you in the interests of protecting you.
Does anyone else have similar experiences and tips they could share?
Thursday, 23 May 2013
Sunday, 5 May 2013
Some hope yet..!
My disability is what they call an "invisible disability" As I get to know peoeple or meet people, I have to go through the conversation of what's "the matter with me" and "what's wrong with me" and explain to them the fluctuations behind my invisible disability. I don't mind this conversation at all - if I am making friends with people, they need to understand that there will be times that I will be physically IN a room, but miles away in my either too tired or too medicated to be involved with what's happening. There will be times where I can't go with them to do fun things - but that doesn't mean I don't want to be there, or not to invite me. What concerns me is the automatic language used - what's WRONG With me. What HAPPENED to POOR LITTLE ME.
But today - a glimmer of hope for the next generation. I manage to work part time in a child based retail establishment meaning I spend a lot of time talking with the younger parts of our society - and what's gems they come out with sometimes! But today - a young boy of 6years old, saw me on my walking stick and asked WHY I was on it? He asked me if I had different types of sticks for different activities, he asked me if sometimes I used a chair with wheels. He was asking me - me as a person - HOW this made a difference in my life. WHAT I did and HOW I went about my day to day activities. There was no negative connections in his head at all - all pure and simple curiosity. It was all going so well - until his (very well meaning) mother, came and apologised for his questions and told her son not to "ask the lady questions about what's wrong with her"
I respect the fact that his mother was doing what she thought was polite, and I aprichiate that a lot. But I don't need pity. Curiosity brought us The Big Bang Theory, Cars, Internets and Every I-type product to name a few. Pity gave us the Workhouse and Mental Asylyms.
I'd take questions any day!
But today - a glimmer of hope for the next generation. I manage to work part time in a child based retail establishment meaning I spend a lot of time talking with the younger parts of our society - and what's gems they come out with sometimes! But today - a young boy of 6years old, saw me on my walking stick and asked WHY I was on it? He asked me if I had different types of sticks for different activities, he asked me if sometimes I used a chair with wheels. He was asking me - me as a person - HOW this made a difference in my life. WHAT I did and HOW I went about my day to day activities. There was no negative connections in his head at all - all pure and simple curiosity. It was all going so well - until his (very well meaning) mother, came and apologised for his questions and told her son not to "ask the lady questions about what's wrong with her"
I respect the fact that his mother was doing what she thought was polite, and I aprichiate that a lot. But I don't need pity. Curiosity brought us The Big Bang Theory, Cars, Internets and Every I-type product to name a few. Pity gave us the Workhouse and Mental Asylyms.
I'd take questions any day!
Wednesday, 1 May 2013
Pain management
Well, today has started off with the best intentions but alas, those intentions have yet to be realised! There are still further applications and forms that need doing for other disability savings and discounts. Number one on my list, not done. Number two on my list - paint and "do" my nails. Not done either. However - watching Criminal Minds and sitting with the Cat and Dog? CHECK!
I have recently started a new pain management technique - it's a double prong attack using more natural methods, rather than bags of painkillers and strong medications with horrible side effects. I have a new aromatherapy oil, which is a great combination of peppermint, ginger and lavender and works surprisingly well. It rubs directly into the skin and causes the area to heat in a style very similar to deep heat but with a nicer smell, and a more relaxing effect in both the area and me.
I am also trying a "sketch" management system, which is basically drawing a picture - the more in-depth the better. It doesn't matter what of - the view from your window, the TV unit, your wall paper. The idea is that you copy something you can see, or can see in your minds eye. By copying something you can see it uses another part of your brain that helps to override the pain part of your brain that recognises pain. It helps to minimise the amount of pain your brain can register. It also works well with a mathematic equation and / or puzzle equation, which uses a similar part of the brain. It seems to be working well - not on its own, but combined with hot water bottles, paracetamols, pain gel etc etc. A step in the right direction of a more natural and holistic approach to my pain management. I recommend giving it a try!
I am trying to figure out how to put photos of the animals up too - they are the best pain killer I have! Once I figure that out I will put some pictures up.
Until then!
Stay well.
X
I have recently started a new pain management technique - it's a double prong attack using more natural methods, rather than bags of painkillers and strong medications with horrible side effects. I have a new aromatherapy oil, which is a great combination of peppermint, ginger and lavender and works surprisingly well. It rubs directly into the skin and causes the area to heat in a style very similar to deep heat but with a nicer smell, and a more relaxing effect in both the area and me.
I am also trying a "sketch" management system, which is basically drawing a picture - the more in-depth the better. It doesn't matter what of - the view from your window, the TV unit, your wall paper. The idea is that you copy something you can see, or can see in your minds eye. By copying something you can see it uses another part of your brain that helps to override the pain part of your brain that recognises pain. It helps to minimise the amount of pain your brain can register. It also works well with a mathematic equation and / or puzzle equation, which uses a similar part of the brain. It seems to be working well - not on its own, but combined with hot water bottles, paracetamols, pain gel etc etc. A step in the right direction of a more natural and holistic approach to my pain management. I recommend giving it a try!
I am trying to figure out how to put photos of the animals up too - they are the best pain killer I have! Once I figure that out I will put some pictures up.
Until then!
Stay well.
X
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