8th September 2014. Today is the start of Invisible Illness Awareness Week. I've been living with an autoimmune disorder since 1994. Instead of dwelling on the (many) negative aspects of this I am going to post one positive way that having AIH has changed my life during the coming week. (Or try to anyway).
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." ~ Vivian Greene.
Painting by Naomi Chandler
DAY ONE. If it were not for my diagnosis I would not have picked up my paint brushes and started this wonderful journey that has lead me to where I am today. Able to inspire others to paint and realise their own artistic ability as well as provide myself with a means of escape.
DAY TWO. Having little or no energy means you prioritise how you're going to spend your time and who you're going to spend it with. And not being able to drink alcohol or socialise after about 8pm means you find out who your real friends are. Life has given me many. I'm very lucky.
DAY THREE. Not having been well enough to do a full-time job since I became ill has meant we've not had the life-style we could have - but I WAS able to be at home with my son when he was growing up. They were the happiest days of my life and I will always be grateful that I was able (and here!) to enjoy them.
DAY FOUR. Moon face? It fills out those wrinkles. Hair loss? It was even MORE unmanageable before! Having to have a nap in the afternoon - it's like I live in a hot country! Let's call it a siesta instead. The tremor? I can paint a whole forest with just one sweep of the brush! Bad days, painful days, nauseous days? You get used to them, and then when a good day comes you notice more and perhaps you feel even more alive and grateful than you would do if you lived a "normal" life.
DAY FIVE. AIH is rare. It is not understood why some people get it. It is not contagious, it is not related in any way to alcohol or life-style. My immune system just started to attack my liver as though it were a foreign body. There is no cure. I take steroids to reduce the inflammation in the liver and immunosuppressants to dampen the immune system's response. There's no denying, the side effects from the medication do get me down, making today's positive easier said than done some days.
I have learnt that if you can't change something it helps if you can change the way you think about it. So I try to accept the side effects of the meds as without them, well...I wouldn't be here. And I don't worry about birthdays and getting older any more, it's a privilege.
DAY SIX. People with invisible illnesses don't like hearing the words "but you look ok". I get that all the time too but we ALL make assumptions based on what we see and hear. Take my profile picture, if I look at it objectively I see a happy, smiling, healthy looking woman with a glass of pink champagne in her hand. Looks are deceiving. Actually it had been an effort to put on make-up and get dressed to go to The Pheasant that evening but it was the opening of my Venice Exhibition. I knew before I went that I'd be too exhausted to stay any longer than half an hour. Jackie, the photographer, put the glass of champagne (which I can't drink anyway) in my hand and, at the moment she pressed the shutter she said something that made me smile. It was one moment in time and not an accurate account of how I felt, but if you can't "see" how someone feels, and they don't tell you, how can you be expected to know?
Having AIH has taught me that there is always another side, if you look closely, or listen properly. I've decided to take these comments as a compliment anyway. Well, you've got to get them where you can when you're over 40 (....ok then, nearly 50).
DAY TWO. Having little or no energy means you prioritise how you're going to spend your time and who you're going to spend it with. And not being able to drink alcohol or socialise after about 8pm means you find out who your real friends are. Life has given me many. I'm very lucky.
DAY THREE. Not having been well enough to do a full-time job since I became ill has meant we've not had the life-style we could have - but I WAS able to be at home with my son when he was growing up. They were the happiest days of my life and I will always be grateful that I was able (and here!) to enjoy them.
DAY FOUR. Moon face? It fills out those wrinkles. Hair loss? It was even MORE unmanageable before! Having to have a nap in the afternoon - it's like I live in a hot country! Let's call it a siesta instead. The tremor? I can paint a whole forest with just one sweep of the brush! Bad days, painful days, nauseous days? You get used to them, and then when a good day comes you notice more and perhaps you feel even more alive and grateful than you would do if you lived a "normal" life.
DAY FIVE. AIH is rare. It is not understood why some people get it. It is not contagious, it is not related in any way to alcohol or life-style. My immune system just started to attack my liver as though it were a foreign body. There is no cure. I take steroids to reduce the inflammation in the liver and immunosuppressants to dampen the immune system's response. There's no denying, the side effects from the medication do get me down, making today's positive easier said than done some days.
I have learnt that if you can't change something it helps if you can change the way you think about it. So I try to accept the side effects of the meds as without them, well...I wouldn't be here. And I don't worry about birthdays and getting older any more, it's a privilege.
DAY SIX. People with invisible illnesses don't like hearing the words "but you look ok". I get that all the time too but we ALL make assumptions based on what we see and hear. Take my profile picture, if I look at it objectively I see a happy, smiling, healthy looking woman with a glass of pink champagne in her hand. Looks are deceiving. Actually it had been an effort to put on make-up and get dressed to go to The Pheasant that evening but it was the opening of my Venice Exhibition. I knew before I went that I'd be too exhausted to stay any longer than half an hour. Jackie, the photographer, put the glass of champagne (which I can't drink anyway) in my hand and, at the moment she pressed the shutter she said something that made me smile. It was one moment in time and not an accurate account of how I felt, but if you can't "see" how someone feels, and they don't tell you, how can you be expected to know?
Having AIH has taught me that there is always another side, if you look closely, or listen properly. I've decided to take these comments as a compliment anyway. Well, you've got to get them where you can when you're over 40 (....ok then, nearly 50).
DAY 7. The end of Invisible illness Awareness Week. Thank you to everyone who has read my posts over the past week. Our experiences make us who we are. I hope I'm a better person because of mine.
I wasn't able to think of positives for a lot of things that trouble me: fatigue, cirrhosis, osteoporosis, liver biopsy's, weight gain, joint and muscle pain, excessive facial hair, increased risk of cancer, sensitivity to sun, skin cancer, higher risk of infection, bruising and so on. But....
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." ~ Vivian Greene.
I wasn't able to think of positives for a lot of things that trouble me: fatigue, cirrhosis, osteoporosis, liver biopsy's, weight gain, joint and muscle pain, excessive facial hair, increased risk of cancer, sensitivity to sun, skin cancer, higher risk of infection, bruising and so on. But....
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." ~ Vivian Greene.
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