From Llewelly King Blog:
http://open.salon.com/blog/llewelly...le_things_that_help_sufferers_cope_with_mecfs
7, 2012 12:41PM
Little Things That Help Sufferers Cope with ME/CFS
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In recent years, I have taken an interest in a little understood disease of the immune system known as Chronic Fatigue Syndrome or Myalgic Encephalomyelitis, its global name.
I became interested in ME/CFS through my friend Deborah Waroff, a colleague of the 1970s, who has been a virtual invalid for 23 years her dream-like life confiscated by a disease no one understands, without a recognized diagnosis, no cure and no effective treatment for the symptoms.
ME/CFS symptoms include joint pain, migraine, cognitive dysfunction and sensitivity to light. Physical exertion is often followed by immediate collapse. Interestingly, most patients remember the exact time and location of their initial attack.
Many sufferers are housebound, like the author Laura Hillenbrand, and go through months and years of being bedridden and unable to tolerate light. Suicide is common.
Women account for at least two-thirds of the 1 million victims in the United States and 17 million worldwide. Yet ME/CFS has no lobby in Washington, no celebrity spokesperson, gets next to no media, leaving the sufferers to feel cursed, hidden in plain sight.
The only blessing in these unblessed lives may be the Internet. It is their line to the larger, happier world and the source of strength through shared experience among the afflicted.
Together with Deborah, I started a YouTube channel of interviews and observations that also has gained world viewership. The channel is called mecfsalert.
Recently, I asked mecfsalert viewers to tell me how they get through the day. Do they cope with a prayer, a mantra, an effective diet, scents, music or reading (for those who have enough energy to do it)?
Their e-mailed responses have been pouring in. Friends and loved ones -- even Internet friends are very important, followed in many e-mails with pets:
Hazel Quinn writes of her comfort: My cat. She waits until she hears me stir; she will be so happy, and will come over and purr. When she comes in from outdoors, I smell the outside on her fur. I can tell what is happening outside by what she has collected such as rain, smoke from peoples fires, moldy smells from dank piles of old leaves and undergrowth, even cow poo at the end of her very furry tail (I live out in the country).
More about cats comes from Sue Howley: I can say the biggest lift for me in recent weeks has been the introduction of two cats into my home. Although I am fairly functional and can look after myself, I still have to spend a lot of time indoors doing not very much. Having the cats around has been wonderful, as it gives me the role of carer and makes me feel of value. When I am resting, having a cat snuggled up, purring away, sharing the snooze, is so deeply relaxing. Simply watching them play together always creates the sense of a smile in my heart.
May McGrath, who lives in Nottingham, England, is severely disabled and needs constant care. She writes: I got ME suddenly in 2008, age 23. I was at work and the left side of my face went numb. It was a virus that affected a facial nerve. I went home and the rest is history. The little things that get me through the day are: my huge rescue dog, Digby; my cat, Bear, who sleeps on me; and my rabbit, Cookie, who loves hugs and kisses.
McGrath adds that it helps her enormously if people preparing her breakfast and lunch take care with the presentation. It really cheers me up if they make it look appetizing, and remember the extras like fruit and a bit of chocolate. It can literally make my day.
Jerrold Spinhirne from Chicago is a shut-in. He says the thing that helps me through my day the most is listening to audiobooks. Before becoming ill, reading was one of my greatest pleasures. For the last six years, due to increasing cognitive difficulties brought on my ME, I can read only briefly with great effort. I find listening to audio much easier and enjoyable. I am very grateful to the volunteer readers at librivox.org for their free recordings of books in the public domain. The librivox recordings of Dickens, by Mil Nicholson, are my current favorites. I must spend most of the day lying down in a dimly lit room and audiobooks make good companions.
The other valuable thing for me is keeping in touch with my friends and fellow sufferers around the world via social media. I dont know how I would survive without the support of my dear online friends. Weeks go by for me without seeing another soul, besides the delivery people and the woman who cleans my apartment.
Cyd James, an American living in Australia, gets such joy as she can from a child's e-mails and chirping birds. She writes: You asked what little things brighten up a patient's day. Our family live in the USA. Therefore, the first thing that brightens up my day is to get an e-mail from my 9-year-old granddaughter. The way she sees the world makes life more innocent and takes me back to my youth.
And second, to hear the birds chirping outside. I get amazed at how after a heavy rain, the birds are immediately out chirping once again. They don't let the storms get them down.
