Archive for August 2013
“Mindfulness doesn’t care.” That is what my teaching partner said to the group of teenagers who eagerly listened, hungry to learn from us. I get (and love) where she was coming from, however, the way I like to phrase it is that mindfulness has no hierarchy of experience: sadness is no better or worse than happiness, when seen through the lens of kind awareness. Neediness is not inferior to self-sufficiency. Bravery no better than fear. Mindfulness doesn’t prefer one over the other or label one as good and the other as bad. Mindfulness just sees what is true. Mindfulness is the kind awareness that allows the experience to be deeply known by us, whatever it is. It is our passport to being more fully alive amidst everything feel.
As Sharon Salzberg said, “ Mindfulness practice is not about having a certain kind of experience it is about how we are…
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By Oliver Swingler
Why this is important
“I wish the the doctors and the governments of this world would realize that:
Even though we can’t undo the damage done and we can’t give life back to those of our number who have already lost it, there are so many of us still breathing. They have a chance to make sure we continue to do so. Sometimes living with this disease, and being part of a community of fellow M.E sufferers, feels like watching a train speed towards a brick wall. If only we had more help to make that train turn, we would get our lives back. I don’t think there could be a group of people more prepared to be utterly alive and to dance through everyday than all of us, if only we can get that chance.
The biggest sadness is that, unless something is done, I know I will come online again one day to hear we have lost another one of our family of friends. Either someone I know and love or someone who is loved by somebody I know. I am also afraid that one day you may come online, and it will be me.
Nobody should live with the knowledge that their life and the lives of their friends are only so uncertain, because no one important cares enough to push for change.
We will go on fighting as we have always done, and we will go on laughing too. Because that is the bravest defiance we have. But we need more and more people to join us by raising their voices to say ‘this is wrong’. the tide of public opinion could change everything for the better. If only it will turn…..”
“Today has been the first Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
It is a day for the understanding of a horrific multisystemic disease, and a day for remembering those who have lost their lives to ME, and those who are right now suffering a living death.
I was lucky to be mostly moderate for the first fifteen years; then I became housebound, often bedbound for longer periods than when I was moderate, and am now mostly severe. Yet I still have my voice – many don’t. Many are so severely ill they are quite literally trapped in their completely malfunctioning bodies – bedbound, paralysed, tube-fed, in darkened rooms and in constant unrelenting pain – and are screaming on the inside; screaming to a world which does not want to hear.
I have been many times at a level of ill I quite openly admit I would never withstand if it was permanent; I would go home without a second thought. But I have the luxury of knowing there is a home; many are very, very frightened to die and they continue through a hellish existence because of it, even though they know their outlook is bleak unless urgent biomedical research is done to offer them a glimmer of hope.
Although I’m so ill and very fragile, I do at least have some control and that allows me to continue, although I do not truly live. And I am one of the luckier ones of the severe states.
Please, take a look at these links. Today marks what would have been the 40th birthday of Sophia Mirza, who died of ME in 2005. Her lovely mother, Criona, and I have spoken on several occasions and she has been so brave in carrying out her daughter’s wishes that her death would not be in vain and fighting the powers-that-be who have all the power but none of the brains!
I would urge all who know me and know what I go through to seek out the DVD of Voices from the Shadows, made by my friend’s brother and mother and an eye-opener into the world of severe ME. I have a copy and even gave one to my doc! Every little bit of awareness helps.
Most of you know that, for a lot of things, it’s too late for me; the damage has been done. But many are still capable of being properly treated if only enough money was raised for vital research in light of the idiotic government’s ignorance still about ME’s origins. It is a physical disease; a proven entity which shows no mercy to one’s sex, race or age.
We hit the £100,000 mark with LDIFME a while ago; now, the race is on for a Rituximab trial here in the UK, which would hopefully yield the same results or better than the Norway trial. Rituximab is an immunotherapy drug, which Pops had during his cancer treatment, and it now looks as though it could help those with ME, which is first and foremost a neuro-immune disease.
Like many diseases in their pathology, they are present due to a malfunctioning immune system. Fix the immune system, and in theory you fix the disease.
Please help us fix this disease before it’s too late to fix the damage caused by it.
Thank you for reading.
Today has been the first Understanding and Remembrance for Severe Myalgic Encephalomyalitis.
All my friends have been sharing links and stories about people who suffer from this illness. They’ve been trying so hard to raise awareness for that hidden 25%…the ones who are invisible and either housebound or bedbound. They’ve all been working really hard and from their beds and sofas that’s a huge achievement to think beyond just existing and getting through the pain and suffering.
I am immensely proud of them all. So many posts have brought me to tears as they open up their feelings and frustrations and let their thoughts come spilling out for all to see…to highlight how badly they are affected. They have let the world into their life for the day and it’s not a pretty picture I can assure you.
I lit my candle for the ones who have lost the battle and also for those who are still fighting it. This was a sad moment for me as I have lost a close friend to this illness too.
It’s made me think about my own situation. Like everyone out there I have my own set of problems that affect how life can be lived. Even without my ME…life is pretty difficult. As it is for so many others…different problems…same restrictions!
I would describe my ME as moderate with dips into severe. I am often housebound but I am never bedbound to the degree I can’t get out of bed unaided. It is a hard existence. One that still confuses me to this day after all these years. My ME fluctuates so wildly. I can be fine in the morning and in terrible pain two hours later…sometimes for no known cause.
For example…the past week:
This time last week I was torn between thinking of my own energy levels or going to my friends birthday party. That might not sound like much but it was a long journey (for me) and all the preparation involved and the actual enjoying myself at his do would probably mean I’d be stuck in my bed for days if not weeks afterwards…there is always payback in some degree. I never know how bad and I never know how long. So I made the decision that because the previous two weeks had been so up and down that I would not go. It hurt me to do that…I wanted so badly to be there to celebrate with him. I wanted to hug him…he gives the best hugs.
So to compensate Clive and I partied right here at home and sent him Skype videos, photos and communicated throughout the evening…we even dressed up and had party food. Not as good as the real thing but we enjoyed it. My energy was still depleted but nowhere near as much as the alternative.
I rested the next two days and that’s a hard thing to do when the fatigue hasn’t struck yet…and sometimes…yes…I get away with it. This time I did pretty much until Tuesday i had to break the rest and go to two medical appointments. Fairly local but one involved chemicals in my eye (diabetic eye screening) and it knocked me for six. I react badly to certain chemicals and boy this was one was a doozy! Added to the mix was my lovely dog had to go in for minor surgery and I don’t deal with stress too well at all these days…so woompf down i went into that spiralling rabbit hole of fatigue, pain and confusion.
My friend was meant to be travelling up this way for a visit so didn’t that get cancelled too. I always feel such a flake when that has to happen. I am not a selfish person but this illness is greedy and makes you have to be to survive.
Then lo and behold today I wake up feeling fine…my fine I have to say isn’t the ‘fine’ of pre ME me! The things I do now that takes me all day or uses up my entire day’s energy are the things I used to do for fun after being at work. Now they are jobs in themselves.
These days are so few and far between but these are the days i play catch up with house maintenance and garden. it’s not often i get to use a sudden surge in energy levels on myself…for fun and enjoyment. I am always playing catch up. So today involved cutting the grass…walking one length…sitting down…another…another rest on the bed for a while and so on…taking hours rather throughout my day. But it brings satisfaction and feeling of being blessed that I can still do these things. So many can’t even get outside and sit in the sunshine. I am so happy for these exhausting days…it makes me feel I am still alive 🙂
I don’t know how bad the payback will be from today. It confuses me that I can be so ill one day and then functional the next.
It plays havoc with my mind and feelings of doubt creep in. No wonder others don’t understand when my abilities can fluctuate so wildly. But it’s ME. I have had it in varying severity for almost 15 years now, I want nothing more than to be consistent and reliable and fun again.
That isn’t going to happen until the medical profession finds us a cause and a cure. And for those who are severely affected their time is running out and it needs to happen tomorrow!
The UK has been sliding down the UN Human Development Report since 1991, and by 1996 became the most unequal nation in the developed world . The gap between rich and poor in UK society has risen sharply during the leadership of the Coalition government, yet long before these people got power, the gap between rich and poor in UK society was equal to Nigeria, with the poorest here living on roughly the same as their counterparts in Hungary and Korea.
Inequality, Inequality, Inequality
The 1996 and 2013 reports makes truly depressing reading, but should come as no surprise to those warning of exactly these results from ideological austerity policies.
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