I got many comments, in various ways about the question I posed about alopecia being an inconvenience or a disability. It's a good debate.
Whilst there is no one answer, I did come to a sort of conclusion, which is that it is only a disability if the person with the condition, defines it as such. But I do have a issue with this self definition. As I wonder if we can have it both ways?
For example, some health authorities contribute to wig reimbursement, others also cover psychological counselling services. However if we want to campaign for such support and ensure more health authorities recognize the need for such support, is it appropriate to label alopecia as an inconvenience? Clearly it would need to be recognized as a disability in order for governments to part with their increasingly small pool of money.
So where does that leave the debate?
I dont't think it can be self defined. I believe if we think society should financially support us baldies to find our place in society, through talking it through, or making us look normal, then alopecia needs to be recognized as a disability.
Do I feel disabled? A big no.
But did I ever, do I sometimes and do new alopecians need help - a big YES!
So you know what, I would be happy to hear that alopecia is a recognized disability.
How I then chose to behave is down to me.
Health ingratitude
I don't think anyone would disagree with the sentiment that health is the most important thing, yet there is a strange relationship we have with it.
When we are ill, there is nothing more that we want, than to be healthy again. In the moment of a severe bout of sickness, there is so much that we would be willing to give or pay to get better immediately.
The minute we are better, we are so greatful, we feel so thankful to be able to function like normal, it is a wonderful feeling.
Sadly, however, this gratitude and appreciation, disappears very quickly. Beiing Healthy becomes very quickly the normal again. And luckily our brain and body quickly recover and forget the pain of the past few days. Although at the time, we felt this feeling would never be forgotten.
So why is it that we only have two views on our health : Neutral or negative.
I have tried to search the internet for insights, but have not found any. Maybe I am alone in this health ingratitude?
What about you, do you take your health for granted?
Do any of you have any rituals or ways of showing gratitude for a healthy day?
What practices work to ensure we appreciate the positive days?
Do let me know......
When we are ill, there is nothing more that we want, than to be healthy again. In the moment of a severe bout of sickness, there is so much that we would be willing to give or pay to get better immediately.
The minute we are better, we are so greatful, we feel so thankful to be able to function like normal, it is a wonderful feeling.
Sadly, however, this gratitude and appreciation, disappears very quickly. Beiing Healthy becomes very quickly the normal again. And luckily our brain and body quickly recover and forget the pain of the past few days. Although at the time, we felt this feeling would never be forgotten.
So why is it that we only have two views on our health : Neutral or negative.
I have tried to search the internet for insights, but have not found any. Maybe I am alone in this health ingratitude?
What about you, do you take your health for granted?
Do any of you have any rituals or ways of showing gratitude for a healthy day?
What practices work to ensure we appreciate the positive days?
Do let me know......
Alopecia - inconvenience of disability?
I recently read that disabilities—visible and invisible—affect more people and have greater consequences for society than most people imagine. It is estimated that about 15% of the global population is living with a disability. This is roughly the size of the combined GDP’s of Ireland, India and Japan.
So is alopecia a disability?
I would assert it is, here is what the article went on to say:
71% of disabilities are non-apparent and include mental health, learning, attention deficit, sensory (low vision/hearing loss), environmental (serious allergies to common products), and developmental/brain injury conditions.
So this article suggests alopecia is not a disability.
Mmmmmmmmm.........
Maybe alopecia is more of an inconvenience than a disability, however I am not so sure.
With alopecia, there may be in an inability for the person
to go swimming
to partake in physical exercise
to feel confident in public spaces
to name just a few things.
But do these things constitute a disbility?
Thoughts?
So is alopecia a disability?
I would assert it is, here is what the article went on to say:
71% of disabilities are non-apparent and include mental health, learning, attention deficit, sensory (low vision/hearing loss), environmental (serious allergies to common products), and developmental/brain injury conditions.
So this article suggests alopecia is not a disability.
Mmmmmmmmm.........
Maybe alopecia is more of an inconvenience than a disability, however I am not so sure.
With alopecia, there may be in an inability for the person
to go swimming
to partake in physical exercise
to feel confident in public spaces
to name just a few things.
But do these things constitute a disbility?
Thoughts?
Thoughtful alopecia gift!
I mentioned last month how spoiled I was on my birthday.
Many of the gifts were personal and thoughtful, including the cocktail in a bag you can freeze - nice touch!
However in the spirit of having an alopecia Friday blog, I share with you one gift that particulary touched me.
It was from one of my top 5 buddies. Remember that post? Some of you did not approve - tee hee.
Either way I received a music CD. In itself a fabulous gift as I love receiving music tips and ideas, as some how I have lost touch with whats cool and what is not.
The CD was by Nell Bryden and the CD cover is beautiful. You can find lots about her on the internet, if you are interested and in one article shes opens with these words:
"Sitting in front of the mirror in my New York apartment, I saw a reflection I hardly recognised. I looked sick. My hair was so thin, large patches of my scalp showed through. My eyebrows and eyelashes were practically gone, too. This wasn’t me, I thought. It felt like a nightmare. But it wasn’t. Until this moment, I had never realised how much my hair had been intertwined with my identity."
So as you can imagine I was very keen to hear her music and I really hoped I would like it!!
And I did.
So thank you friends for looking out for me and for feeling comfortable in gving me alopecian inspired gifts. am loving it!
Many of the gifts were personal and thoughtful, including the cocktail in a bag you can freeze - nice touch!
However in the spirit of having an alopecia Friday blog, I share with you one gift that particulary touched me.
It was from one of my top 5 buddies. Remember that post? Some of you did not approve - tee hee.
Either way I received a music CD. In itself a fabulous gift as I love receiving music tips and ideas, as some how I have lost touch with whats cool and what is not.
The CD was by Nell Bryden and the CD cover is beautiful. You can find lots about her on the internet, if you are interested and in one article shes opens with these words:
"Sitting in front of the mirror in my New York apartment, I saw a reflection I hardly recognised. I looked sick. My hair was so thin, large patches of my scalp showed through. My eyebrows and eyelashes were practically gone, too. This wasn’t me, I thought. It felt like a nightmare. But it wasn’t. Until this moment, I had never realised how much my hair had been intertwined with my identity."
So as you can imagine I was very keen to hear her music and I really hoped I would like it!!
And I did.
So thank you friends for looking out for me and for feeling comfortable in gving me alopecian inspired gifts. am loving it!
Taking stock
After 15 years marriage, I figured it was time to take stock.
So whilst on our weekend away in small village in the Black Forest, we decided (well I kind of did) that it was good idea for us to discuss the 15 events that have shaped our marriage and of course our relationship.
It took us the whole of our nine course meal (yup - that was indulgent!) to come up with a list that we felt good about and that was representative of our years together.
We did not focus just on the good stuff, like fun holidays etc, we agreed that even sad events had a place on the list, as the way in which we deal with adversity or mak decisions as a couple, says everything about how are as a couple.
It was great to spend time on this, it was lovely to hear that we were both very proud of each other. To hear that we both felt we had space to do what we need to do and that we both felt understood by the other.
We consciosuly steered clear of offering each other feedback on what we could do better, as the night was all about the good stuff, the gratitude and the appreciation.
So maybe it did take us 15 years to do something like this, but lets say it was worth the wait.
Do you ever take stock in such a structured way?
What do you think the benefits are?
Are there any downsides to such discussions?
Do share.........
So whilst on our weekend away in small village in the Black Forest, we decided (well I kind of did) that it was good idea for us to discuss the 15 events that have shaped our marriage and of course our relationship.
It took us the whole of our nine course meal (yup - that was indulgent!) to come up with a list that we felt good about and that was representative of our years together.
We did not focus just on the good stuff, like fun holidays etc, we agreed that even sad events had a place on the list, as the way in which we deal with adversity or mak decisions as a couple, says everything about how are as a couple.
It was great to spend time on this, it was lovely to hear that we were both very proud of each other. To hear that we both felt we had space to do what we need to do and that we both felt understood by the other.
We consciosuly steered clear of offering each other feedback on what we could do better, as the night was all about the good stuff, the gratitude and the appreciation.
So maybe it did take us 15 years to do something like this, but lets say it was worth the wait.
Do you ever take stock in such a structured way?
What do you think the benefits are?
Are there any downsides to such discussions?
Do share.........
Seasons
I have posted before about my love of seasons, and each time I experience a new season arriving, it gives me many sensations and emotions.
There is something about observing a visual change in your environment to cause you to take stock.
Although it is mid November, today I noticed Autumn. For the first time.
Of course I have been donning the winter coats already and moving the sandals into the cellar, but actually feeling the change of season happened today. In the forest in our village.
It was impossible not to stop and be affected by the leaves, the colours and the sheer beauty of my surroundings.
Have you noticed the arrival of Autumn? Have you felt it? Have you embraced it?
Its gorgeous out there, go see!
There is something about observing a visual change in your environment to cause you to take stock.
Although it is mid November, today I noticed Autumn. For the first time.
Of course I have been donning the winter coats already and moving the sandals into the cellar, but actually feeling the change of season happened today. In the forest in our village.
It was impossible not to stop and be affected by the leaves, the colours and the sheer beauty of my surroundings.
Have you noticed the arrival of Autumn? Have you felt it? Have you embraced it?
Its gorgeous out there, go see!
Clear skin
So the comments have shamed me into telling you the next installement.
I haved used the cream given by the "telling off" Dr for 4 days in a row and I have to confess that for the first time in years my hands are white again. They are no longer red, but white.
The change is drastic. I am shocked.
I had obviously accepted the fact that red hands are nomal. Now I see that they are not.
Now granted I am using cortizone cream which is rather agressive, but it has shown me that I have tolerated something unnecessarily. Now in 2 days I get the real test and speak about the sustainable solution. So more then!
So todays question is: What are you tolerating and accepting that you can actually do something about?
Is there something that you have taken to be normal, that actually isn't?
And if there is, what are you going to do about it today?
I haved used the cream given by the "telling off" Dr for 4 days in a row and I have to confess that for the first time in years my hands are white again. They are no longer red, but white.
The change is drastic. I am shocked.
I had obviously accepted the fact that red hands are nomal. Now I see that they are not.
Now granted I am using cortizone cream which is rather agressive, but it has shown me that I have tolerated something unnecessarily. Now in 2 days I get the real test and speak about the sustainable solution. So more then!
So todays question is: What are you tolerating and accepting that you can actually do something about?
Is there something that you have taken to be normal, that actually isn't?
And if there is, what are you going to do about it today?
A good telling off
I have had bad skin since birth. Nothing too bad, just eczema, dermatitisy dry and red skin.
I generally ignore it, rub in some moisturizer type lotion most days, and always wear rubber gloves to wash up. I have generally learned to cope with it and manage it, rather than treat it and look for solutions.
Sounds maybe dumb, but somehow you get used to everything - right?
When my skin flares up badly, I grab for my cortisone cream, but otherwise ignore it.
Recently my cortisone cream has been squeezed to death. There really is nothing left in the tube, so I had to take action.
However I don't have a regular Doctor. Shocking as that may sound, I just don't go to one.
Either way I found a quick appointment and went along to get some more cream.
The Doctor was disgraced. She told me off. I mean it. She reprimanded me for ignoring my hands and immediately referred me to a Dermatologist. I said that was OK, and I was fine to wait for the usual few weeks to get a slot. She told me off again and said, you need immediate intervention and found me a Doctor who would see me next week!!!
I dared to tell her that slot wouldn't work as I had my family booked in for the flu vaccine some where else at that time. Without asking, she immeditely called back the Dermatologist, who agreed to vaccinate my family at the same time as treating me!!!
I was stunned.
I mean yes I have bad skin, but it's not that bad and most definitely not life threatening. I know I sound like a complaining minny, but I was cross with being told off and cross for being controlled like that.
But then I got a hold of myself I thought, wow, how spoilt am I to be given such treatment for my condition which I have neglected for years! So thank you bossy lady for doing what I should have done years ago!
Strange how we humans work, why was I letting my ego get in the way of my health? Whats that all about eh?
So let's see what we find.
I was stunned.
I mean yes I have bad skin, but it's not that bad and most definitely not life threatening. I know I sound like a complaining minny, but I was cross with being told off and cross for being controlled like that.
But then I got a hold of myself I thought, wow, how spoilt am I to be given such treatment for my condition which I have neglected for years! So thank you bossy lady for doing what I should have done years ago!
Strange how we humans work, why was I letting my ego get in the way of my health? Whats that all about eh?
So let's see what we find.
Awareness
During my MBA, which is about 15 years ago, I was exposed to a book. I remember reading it, or rather dipping into it, and enjoying what I was learning. The book was called "Awareness" and the theme was all about making yourself more aware of yourself and your surroundings.
I remember sharing it with a friend, and interestingly enough during our last get together, we talked about it. I have not picked it up since my MBA days, but as I sat in the garden earlier today, one of the exercises came back to me and I decided to have a go.
Basically, you sit uninterrupted and still for 10 minutes, which as you will agree is a sheer luxury, and in those 10 minutes, you reel off to yourself, all the things you are aware of. Ideally you use all your senses, and you explore what are you seeing, feeling, smelling etc.
Like any meditation, you push all other thoughts to the side, temporarily, and just focus on what you are aware of right now. In that moment.
For me, I felt my feet touching the floor, I heard the birds, I saw the green grass in front of me, I noticed by breathing, I heard a motorbike, I felt my arms against the arms of the chair, I heard the birds again, I saw the cranes building the new school behind our house, I smelt the air and on I went.
Not sure I mangaged for a full ten minutes, as I realized my lasagne was about to burn in the oven, but hey I am no expert at this stuff, I just like having a go!
When I finished, I realized that I had some big omissions in my awareness, eg the sun was crashing down and is was boiling hot, I had not brought to my awareness the fact that my face was being warmed by the sun at all.
And this was just a reminder, that sometimes we miss the obvious, even when we sit down and think. Having a quiet mind is a practice, one which I do not master, but I get the point of it. I am sure practicing this, really helps the big stuff to raise to the surface quicker.
I imagine, that only by becoming aware of things, can we be truly greatful and possibly make good holistic life choices.
I think I am going to the cellar, to dig out the book again. I think it was written by Robert O. Stevens, let's see if my memory serves me well.
Anyone else read it?
Anyone else having a go at being aware?
Anyone else got any tips at this stuff?
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