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Understanding and Remembrance Day for Severe ME is August 8

By HERWriter
 
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Understanding and Remembrance Day for Severe ME on August 8 B-D-S/PhotoSpin

The fact that I have written this article is one solid indicator that I am now out of the severe column and squarely planted in the mild to moderate column.

I am able this year to bike ride, swim, go on a picnic, and take the dog for a walk. I know of too many people with severe ME/CFS though who can't remember the last time they did any of this. And yes, that is compounded by the common ME/CFS symptom of brain fog and cognitive chaos.

Severe ME/CFS renders the individual housebound or bed-ridden. Getting out of bed just to walk down the hall to the bathroom or the living room to collapse in a chair can be a marathon.

Being able to do it without bumping into walls or falling down can be a challenge. Will I make it this time? Always an adventure, even in the tiniest exertions.

Postural orthostatic tachycardia syndrome (POTS) and orthostatic intolerance (OI) make the trip rockier -- or impossible.

Breathing can be exhausting. Sometimes just lying down inhaling and exhaling can take everything you've got.

Food sensitivities and problems with the digestive system can make getting any nutrition a nightmare.

Despite the common misconception that ME/CFS is typified by being tired or sleeping long hours, the sufferer is just as likely to be unable to sleep in any normal way, within a 24-hour period.

It's common for sleeping hours to be turned upside down, with any waking hours happening in the middle of the night, while the daytime hours are spent in a sleep that, no matter how long, is usually unrefreshing.

I am only touching on the tip of the ME/CFS iceberg of symptoms and limitations. There isn't room in this article to paint the whole bleak picture of multisystem breakdown.

Understanding and Remembrance Day for Severe ME is not an event that's well-known. Part of this is due to the fact that it is only the second year of its observance. And then, there is the peculiar but indisputable fact that for whatever reasons we almost never make any kind of mainstream news.

It's left almost entirely up to the ME/CFS community of patients and caregivers to hold up the banner and lift up the megaphone to make some noise.

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Anonymous

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From the FDA: http://www.fda.gov/downloads/BiologicsBloodVaccines/Vaccines/ApprovedProducts/UCM111263.pdf
6.2 Postmarketing Experience
THE FOLLOWING ADVERSE EVENTS HAVE BEEN SPONTANEOUSLY REPORTED DURING POST-APPROVAL USE OF GARDASIL. Because these events were reported voluntarily from a population of uncertain size, it is not possible to reliably estimate their frequency or to establish a causal relationship to vaccine exposure.
Blood and lymphatic system disorders: Autoimmune hemolytic anemia, idiopathic thrombocytopenic purpura, lymphadenopathy. Respiratory, thoracic and mediastinal disorders: Pulmonary embolus. Gastrointestinal disorders: Nausea, pancreatitis, vomiting. General disorders and administration site conditions: Asthenia, chills, DEATH, fatigue, malaise. Immune system disorders: Autoimmune diseases, hypersensitivity reactions including anaphylactic/anaphylactoid reactions, bronchospasm, and urticaria. Musculoskeletal and connective tissue disorders: Arthralgia, myalgia. Nervous system disorders: Acute disseminated encephalomyelitis, dizziness, Guillain-Barré syndrome, headache, motor neuron disease, paralysis, seizures, syncope (including syncope associated with tonic-clonic movements and other seizure-like activity) sometimes resulting in falling with injury, transverse myelitis. Infections and infestations: cellulitis. Vascular disorders: Deep venous thrombosis.

August 8, 2014 - 2:48pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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