Posted by amber | My Diary | Posted on October 28th, 2010
Whilst away recently I went to a Design Show in London. Which actually was more a platform to purchase really expensive art. You could pick up a Klimt, Picasso, Miro, etc for a steal … $ 400 000 for a pencil sketch by Klimt – which looked more like a piece of doodle that had been yanked out of a work book!!
Now I still would really like to own an original piece of art like that but it also got me thinking about how life imitates art. This means reality reflects what had previously been expressed in art. And if this was the case, what paintings reflected me and my life???????????
Lets start with The Scream by Edvard Munch. Some days this is an expression of my life … tortured, howling in despair. All the colours hard and cruel. No answers seem at hand. I can only clutch myself and sob at the hopelessness of it all.
…and then some days I am Soft Watches by Dali. CF has changed my concept of time. Firstly I no longer get up the same time. My mornings have moved out. I don’t seem to have as much time as I had before because I get tired so quickly so I have less time left in the day to do stuff. I also feel I have lost time from my life – the last 2 years to be exact! I feel like I am older than I am as CF seems to have aged me physically, mentally and spiritually. I also sleep when others are awake and this gives me a sense of being in another time zone.
And some days are like The Kiss by Klimt. All gold and glowing, full of comfort and warmth. I feel like I am being taken care of and everything will be alright. I feel like I could well wake up and CF will have vanished like a mist in the morning sunshine.
Then again some days are like a Jenny Saville painting. The are raw and red and resigned to there fate. The are the essence of reality … harsh and cruel sometimes. And like me with CF on a bad day, it seems as if all the air, the life, the fight has just been sucked out and I am a body on a autopsy table.
And then there are days when I manage to feel like Marilyn Monroe in Andy Warhol’s painting. All bright neon, sexy, alive and vibrant. Bursting with energy and vigour. And those are the pictures I wish everyday consisted of.
Posted by amber | My Diary | Posted on October 21st, 2010
Its 2 years since I got the dreaded CF and it has taken me that long to have this eureka moment. I AM a slow learner !@#$$%^^&
When I am at home I spend most of the time on my own. Minimal noise, minimal interaction, minimal sights. I cook, read, watch TV, yoga and snuggle with my cat. All pretty much me, myself and I. If I go out, I drive to the location and spend a minimal amount of time there, eg shopping for food. Even when I am counselling its just me and the phone and the caller.
THEN you go overseas on holiday. Noise, lights, motion, people, energy, colour, texture, smells! I get totall sensory overload. Plus I am made even more aware of how little I can accomplish and how much the rest of the world is doing. I actually did up my walking which was amazing but somewhere you pay. I spent one day totally in bed and all afternoons horizontal and crying. It is just really sad and scary that my life has amounted to this. And my poor husband has to spend half of the day entertaining himself, which makes me feel even worse.
So the kind of holiday that works for CF sufferers??????????????? I think a beach holiday is best. I get to lie in the sun and read or rest or tan and I don’t look like I am doing nothing because that’s want you’re meant to do at the beach. My husband can swim, snorkel, surf, exercise and this doesn’t limit his experience or fun.
Or go to the Holiday In, eg holiday at home
Or go to Romania, eg remain here
Either which way you have to balance the good with the bad and make the best of the moments you do have.
Posted by amber | My Diary | Posted on October 6th, 2010
Well lets start at the beginning. First you are a house – 4 walls, a roof, garage, rooms, toilets, etc. You have your quirks – you sometimes leak in winter; you get awfully hot in summer; your garage is to small and so on. Likewise I was a human being, a little older; maybe not that wise; creaky in cold weather and prone to turning red in hot weather. But all in all a good specimen, much like my house.
Then one day someone somewhere gets dissatisfied. As to my house, we needed a garden and it was positioned incorrectly. So we take the house down – see pic on the left. And me as a human? Well lord alone knows why I was chosen for destruction but it happened and CF took over and changed my ‘house’.
So you are devastated, brought down to your very basics, flesh and bone, soil and rock. And there we stay for a while till we settle into this new stage. Then the building begins. Architect, land surveyor, builders… Foundations first, the bricks, walls, a roof, plastering, and finishes. …and eventually one moves in.
And me. Devastated, still feel shaky with this thing CF. I think my foundations are in = taking loads of vitamins, minerals and supplements; seeing someone about my head; seeing loads of doctors, physicians, specialist about my body/building. And now the walls have to be built. I think sometimes they are there because I feel strong but then sometimes, there is a ‘strong wind’ and ‘a flood’ and all of it falls down again. And I have to start all over – try a new doctor; rest more; eat better. This building/healing process is not easy. It takes patience, strength, humour, support and optimism. Maybe my new house/me will be better than the plans; better than the sum of all my supplements; better than I imagine …
I cant wait till my house is rebuilt, both literally and figuratively. And I can wait to move back into me again.
Posted by amber | My Diary | Posted on October 3rd, 2010
Oh I hear you groaning … “Another World War II story and what had THIS got to do with CF!” Well I do sometimes feel like I am fighting a loosing battle so there is some thread of truth, but today is about Super Heroes.
Before I got CF I was Super Fit. This hero had special powers and besides being a happy and caring hero, I had other super powers. I could run, skip, swim, hike and box without tiring. Not a good super power for others but it made me happy. I could also do loads of other stuff straight after doing a run, swim, etc. I had boundless energy and I had the ability to work. And with this ability to work cam the ability to concentrate, function effectively, learn and remember. Again, not amazing abilities but none the less necessary. If I got injured or sick I healed quickly. And if I tired myself a goods nights rest was all I needed to be up and about the next day. I rarely got ill; never got anxious or depressed; and there never seemed to be enough hours in the day to fit all I wanted to do in.
Then I got CF and my super hero status changed. I became as welcome to myself and others as the SS. I became Super Slow, Super Slothly, Super Soggy, Super Stressed, Super Sad, Super Sleepy, Super Stupid. And as far as I am concerned those kind of powers are of no great use. I mean what kind of Super Hero is known for their powers of fatigue, anxiety, cellulite and the ability to fall ill at the drop of a hat??????? Who wants a Super Hero who cant help herself let alone others?!
The only similar anti hero I can find is Captain Klutz =
Ringo Fonebone was a hopelessly inept boy. He was utterly absorbed in reading comic books, to the point that he was kicked out of his parents’ house, as well as a vocational school he tried to attend and a flophouse (the last expulsion left him in nothing but a set of red long johns and dotted boxer shorts). He realized what a mess his life was, and as he tried to commit suicide by hanging himself, the towel he used as a rope broke. He fell to earth, inadvertently acquiring a mask (originally a woman’s hat being thrown out by her irate husband), and finally crash-landed in the middle of a robbery, in long-johns, with his “mask” and towel-”cape,” distracting the robber long enough for the police to capture him. The robber’s angry exclamation: “Why, you klutz!” was taken by the dazed (and temporarily amnesiac) Ringo as his name, and he responded to the officers’ questions regarding his identity with: “I’m…a klutz, captain.” The police thought he had said he was “Captain Klutz,” and the rest was history.
Well at least this guy was funny!
My question is what possible super powers do I have that have made becoming the anti-hero worthwhile????????
Posted by amber | Meds | Posted on October 3rd, 2010
I love this story from Pravs and sometimes a good story can be a healer too.
Once a king called upon all of his wise men and asked them, ” Is there a mantra or suggestion which works in every situation, in every circumstances, in every place and in every time. In every joy, every sorrow, every defeat and every victory? One answer for all questions? Something which can help me when none of you is available to advise me? Tell me is there any mantra?”
All the wise men were puzzled by the King’s question. They thought and thought. After a lengthy discussion, an old man suggested something which appealed to all of them. They went to the king and gave him something written on paper, with a condition that the king was not to see it out of curiosity.
Only in extreme danger, when the King finds himself alone and there seems to be no way, only then he can see it. The King put the papers under his Diamond ring.
Some time later, the neighbors attacked the Kingdom. King and his army fought bravely but lost the battle. The King had to flee on his horse. The enemies were following him. getting closer and closer. Suddenly the King found himself standing at the end of the road – that road was not going anywhere. Underneath there was a rocky valley thousand feet deep. If he jumped into it, he would be finished…and he could not return because it was a small road…the sound of enemy’s horses was approaching fast. The King became restless. There seemed to be no way.
Then suddenly he saw the Diamond in his ring shining in the sun, and he remembered the message hidden in the ring. He opened the diamond and read the message. The message was – ” THIS TOO SHALL PASS”
The King read it . Again read it. Suddenly something struck him- Yes ! This too will pass. Only a few days ago, I was enjoying my kingdom. I was the mightiest of all the Kings. Yet today, the Kingdom and all his pleasure have gone. I am here trying to escape from enemies. Like those days of luxuries have gone, this day of danger too will pass. A calm came on his face. He kept standing there. The place where he was standing was full of natural beauty. He had never known that such a beautiful place was also a part of his Kingdom.
The revelation of the message had a great effect on him. He relaxed and forgot about those following him. After a few minutes he realized that the noise of the horses and the enemy coming was receding. They moved into some other part of the mountains and were near him.
The King was very brave. He reorganized his army and fought again. He defeated the enemy and regained his empire. When he returned to his empire after victory, he was received with much fanfare. The whole capital was rejoicing in the victory.
Everyone was in a festive mood. Flowers were being showered on King from every house, from every corner. People were dancing and singing. For a moment King said to himself,” I am one of the bravest and greatest King. It is not easy to defeat me. With all the reception and celebration he saw an ego emerging in him.
Suddenly the Diamond of his ring flashed in the sunlight and reminded him of the message. He open it and read it again: “THIS TOO SHALL PASS”.
He became silent. His face went through a total change – from the egoist he moved to a state of utter humbleness. If this too is going to pass, it is not yours. The defeat was not yours, the victory is not yours. You are just a watcher. Everything passes by. We are witnesses of all this. We are the perceivers. Life comes and goes. Happiness comes and goes. Sorrow comes and goes.
Now as you have read this story, just sit silently and evaluate your own life. This too will pass. Think of the moments of joy and victory in your life. Think of the moment of Sorrow and defeat. Are they permanent ? They all come and pass away.
Life just passes away. There is nothing permanent in this world. Every thing changes except the law of change. Think over it from your own perspective. You have seen all the changes. You have survived all setbacks, all defeats and all sorrows. All have passed away. The problems in the present, they too will pass away. Because nothing remains forever. Joy and sorrow are the two faces of the same coin. They both will pass away.
You are just a witness of change. Experience it, understand it, and enjoy the present moment – this too shall pass!
- Hot as Hell
- Back to Front
- 30 TIPS FOR TREATING CFS
- Kick me when I am down
- Sugar, babes?
- It’s plane, I hate flying!
- Source Code or the Fork in the Road
- 21st Century Barbie
- Bitter Sweet
- Tulips from Amsterdam?
- The After Life
- Doctor, Doctor
- Long Walk to Freedom
- Addict or Fashionably Intoxicated??
- Brighter tomorrows
- One would never say …
- Camps Bay Sunset December 2010
- Blood Donation and CFS
- Merry CFS and a Happy M.E.