Tag Archives: Exhaustion

Fibromyalgia & ME/CFS Awareness Day

The day after Italy‘s Parliament on Wednesday May 11 overwhelming gave final approval to a law recognizing civil unions between same-sex partners, the world had again a day to think of a lot of things.

The day that Brazil’s Senate has voted to suspend President Dilma Rousseff immediately and begin impeachment proceedings against her on accusations of tampering with accounts to hide a budget shortfall, the world also thought of many people who need lots of funds to pay for their health. Many of them living in a healthy country not being themselves in a healthy state.

Ten years after the mass unrest by the Primeiro Comando da Capital began in São Paulo (Brazil), leaving at least 150 dead, on May 12 the world also remembered the 7.3-magnitude earthquake and six major aftershocks hit Nepal, killing over 200 people, but leaving many also handicapped.

It is for disabled people certain days are also created to bring their situation in attention. On the Day of the Finnish Identity (Finland) we also have an International Nurses Day and the International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day.

For a long time the medical world did not want to take the condition serious by which people where bullied with concentration problems and need of sleep, feeling tired all the time.

Also the way how media looked at CFS or Chronic fatigue syndrome has often been controversial; in November 1990 the magazine Newsweek ran a cover story on CFS which although supportive of an organic cause of the illness also featured the term Yuppie Flu. Reflecting a stereotype that CFS mainly affected yuppies, the implication was that CFS was a form of burnout.

Luckily today the world recognises Chronic fatigue syndrome (CFS) as a condition that causes extreme tiredness. Though known it needs to bring it under the loop and bring more awareness under the entices, there has been a created a special day for them. This in the hope that more people can come to understand how the victims of that disease have debilitating fatigue that lasts for six months or longer. At the moment the medical world does not yet have a known cause, which makes that still a lot of research has to be done.

Many doctors and researchers think that CFS may not be a single illness but a group of symptoms caused by several conditions. One theory is that a microorganism, such as a virus, or a chemical injures the body and damages the immune system, allowing dormant viruses to become active. When these viruses start growing again, the immune system may overreact and produce chemicals called cytokines that can cause flu-like symptoms. Immune abnormalities have been found in studies. {Gale Encyclopedia of Alternative Medicine | 2005 | Rowland, Belinda; Odle, Teresa}

We do have to take into account that having CFS is not just a matter of being tired. Those people with CFS having severe fatigue that keeps them from performing their normal daily activities should also know that this should not mean they are passed out by the community or would not be able to do something waluable.

Their big problem is to find work, attend school, or even to take part in social activities and to be respected for what is holding them back to give the 100%. And if they love to exercise or try to be active in spite of their fatigue, people with CFS experience what some patients call “payback”— debilitating exhaustion that can confine them to bed for days.

Often such people do not know where to find solace and are confronted with people who do not understand their situations and often consider them as lazy or as profiteers. though when we look at the present figures it is clear that there are so many people caught by that trigger who wants to pull them down, that we also have to question if not somebody in our near environment is having it as well and if it also not have to do with what we have been added in the things we eat (all those chemical additives).

The Bendy Beauty girl started blogging on July 2015 it seems with mostly looking at Glossyboxes. But using these skin creams and treatments perhaps she also came to wonder what is in it all those products we so gladly put on our body hoping to look better, but are they making us also better? Often not. In lots of the additives bad products do a lot of damage to our body. Paraben, widely used preservatives in cosmetic and pharmaceutical products and collagen, which has many medical uses in treating complications of the bones and skin, or not so innocent as many think.

In man’s hope to stay young or to look younger than the real age many brands have jumped on the collagen bandwagon to produce gels, creams and powders but also dermal fillers, to rejuvenate skin and fill wrinkles.

May the 1st being the start of Ehlers-Danlos Syndrome awareness month the beauty girl wanted doing posts about EDS, covering the different types of EDS, where the zebra comes from, fibromyalgia awareness day, the HMSA and their work with all of the hypermobility causing syndromes.

For those of you that aren’t aware, the zebra is the mascot animal of Ehlers-Danlos syndrome and as a result many of us with EDS collect zebra themed items. We might collect them because we love zebras or because people buy them for us on a regular basis – some EDSers have even been known to get fed up of the whole zebra thing! {Paperchase Serengeti Range – Zebras!}

In one article she also gives 8 self-care tips for getting through a flare up.

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Read about the collagen:

Bendy Investigates: What is Collagen?

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Preceding articles

Though disabled in the eyes of society able to do great things

What would you do if…?

What would you do if…? Continued trial

What would you do if…? Continued trial

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Further reading

  1. Chronic Fatigue/M.E Awareness week
  2. Chronic Illness and Depression- The Link
  3. Chronic Life: Getting a New Diagnosis
  4. Narcolepsy gives and takes.
  5. The Dietitian

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Bendy Beauty

fibro1smToday my zebra has gone purple as it is the awareness day for fibromyalgia as well as for ME/CFS.
I don’t often talk about the fact that I have a fibromyalgia (or fibro for short) diagnosis as well as my Ehlers-Danlos syndrome but it is actually quite common for people with Hypermobile EDS to get fibro secondary to their EDS.

Secondary fibromyalgia is slightly different from the more well known about primary fibromyalgia. The more common primary fibro has no identifiable cause, whereas secondary fibro does – in my case my EDS. This means I can sometimes foresee a flare as a result of a dislocation or series of dislocations.

What is Fibromyalgia?

Fibro is a chronic and sometimes disabling condition characterised mainly by persistent musculo-skeletal pain with no identifiable cause. Other common symptoms among sufferers include extreme fatigue, brain fog which is sometimes called ‘fibro fog’, muscle spasms and cramps…

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He who beams never walks in the dark

The Western World has her holy cow : the free market economy. GNP and welfare are its arteries. It is convinced that here, now and immediately, everything always has to go quicker and better, while its adage is one of ‘always more’. The average westerner is chasing his salary, from early morning till late at night. His holy cow has eaten every scrap of him in the meantime. As well as the soil that has produced the animal .
 
That is the problem.

Light beams in smoke02

Light beams in smoke02 (Photo credit: Wikipedia)

We have reached the limit. It is not easy to admit that we have grown crooked towards ourselves, away from the other; alienated from the essential, away from our heart. We are collectively indulging in navel-staring at our individualism, while we are searching  with our remaining energy, for new stimuli that have to give us a feeling that we are still alive. Essentially, we are squeezed dry. Empty. Exhausted. Notwithstanding all our knowledge and abilities, we are like a giant with feet of clay who screams from a deep nostalgia he cannot name.

Nostalgia: the sign of our times
“Homesick”, the English call it, “Sehnsucht” for the Germans. Our heart shouts that is ‘sick’ for its ‘ home’, wants to “come home” and “longs to see”. We are directed by a longing we cannot name, that drives us and of which Zen Master Hisamatsu says :

it rises from the heart of existence itself”.

When we stop making a playground of our life and become aware of our emptiness and longing, a deeper force is released from within us. Against all odds it is experienced as ‘light’. Light without darkness, hope without despair, fullness without emptiness. This light is not only there, but essential. Small and humble, but beaming with life. He who stands in this light, no longer walks in the dark. Never again.

In this time of  Christmas  MWN wants to spread this light. We do this thanks to your support. Your contribution in this sensitive time is for people in need and for us of vital importance. We wish you and your family a Christmas full of light and life.

– The proverbs are the most visible part of MWN. Together they represent a potted philosophy, and a handful of wisdom! Download now!: Proverb of the month.
MWN and URI Europe wish to contribute to a better world in a substantial manner. We want to set an example and have therefore introduced the URI proverbs.

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Dutch version / Nederlandse versie: Wie straalt, loopt nooit in het donker

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Find also:

Searching for fulfillment and meaning through own efforts, facing unsatisfaction and depression

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Filed under Economical affairs, Movement Without a Name, Welfare matters

Earth’s Unwinding

At the time of Elul and entering a new academic year it is good, looking forward to a new season, the transition time should make us to relax, unwind and take time to resource, certainly now the nature is going over to the time of sleep, where plants shall change colour and let us think of death and life, past and future.

stillvoicing

Friends, a poem from a year ago that seems fitting today.

This is the season of earth’s unwinding – finding
soil’s Sabbath.
You can hear terra firma
exhale
expire
exhausted, she
sleeps and with sleep
comes a dreaming –finally
ease frees earth’s form to reframe:
subliminal luminosity obtains.
The sun lays low and so
bestows on the earth – that I am –
a softer glow
a kind of light that sees shade
not as harbinger of dark dangerous design
but as foreshadows of my resolve:
I will stop. I will pray. I will stay distraction.
I will dare that dying
that is life, that is wealth, that is
repose, reward, renewal.
I will be late Autumn.
I will be November.

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