An Idea whose time is NOW

Caregivers know already.

Patients – maybe they get it, but they are pretty sick so their caregivers do all the research, pull info together, and do all the background work.

What if it happens to you? What if your spouse suddenly needs so much help that you can’t work?

Worse, what if it drags on forever?

I’m here to tell you that it doesn’t have to be so damned hard. I’m going to make sure of that. I am building templates, creating articles, and crafting presentations that address the needs of a caregiver, a patient, and others who are involved in the care of someone in this situation.

I’ve talked with several folks who had Chronic Fatigue Syndrome at some point. They somewhat recovered, but all admit to being subject to relapse. One friend says he thinks his was due to a build up of toxins in his environment. Another swears her Chronic Fatigue Syndrome has a direct correlation to child birth – each of 3 births was followed by severe and constant fatigue for 2 years. It wasn’t until she dug deeply into her emotional history that she was able to restore herself. Another gal says her Fibromyalgia had a specific starting point in her ribs but there were life issues she’d been ignoring that seemed to have a direct relationship to where the pain ignited in her body. She says she had emotional signs all along and it wasn’t  until she learned to listen to her body’s cries for attention was she able to recover. And the Integrative Medical team at the Mayo says that EVERYONE is different, there is no known cure or treatment, and if it was so obvious, everyone would advice the same treatment.

The real question: WHY ARE WE STILL EVEN GUESSING? This is as real as it gets. A person literally can’t get out of bed. Another can’t easily leave the house. Another might function in a zombie state while working at first, but if it wears on and on, they eventually collapse. Some experience dizziness, nausea, cramping, and an unquestionable brain fog and mental impairment sometimes akin to how a dementia patient is slow to respond. The processor is on super slow speed like it’s about to crash sometimes.

The truth of the matter is we all have history and emotional healing is sometimes our path. Others I’ve listened to on videos have no idea what caused the disease, nor what put them into remission. Our doctors are the best in the world — the Mayo Clinic specialists ran every test possible. And when the tests were inconclusive, they found that CFS / ME has no medical exam to prove it — it’s all about ruling out everything else, looking at the myriad of symptoms, and realizing that they fit the category.

ME – Myalgic Encephalomyelitis – Inflammation of the Brain and Spinal Chord – is listed as a subset of CFS — but it’s really it’s own living nightmare. It affects EVERY part of the body system. That finally explains to us why my husbands symptom list goes on and on, changes, but always wraps around the same general complaints: nausea, dizziness, brain fog, memory loss, and physical pain. This disease is fairly well documented in the UK, Australia, and other places abroad. In the US – it’s lumped in with CFS and Fibromyalgia. WE now understand to some degree why so many General Practitioners would be so baffled by the disease. We now understand why they all directed him to Gastroenterology even though this is not a Gastro issue. What we don’t understand is how, after 15 Gastroenterologists, invasive physical explorations from the head to the toes, they never figured out what it was. Without a diagnosis, there is no help, no guidance, no medication, and worst of all — no way to get disability insurance to cover the loss of work. One of my questions for the first 5 medical providers is why they didn’t look deep enough to identify this disease. Not one told us they thought it was in his head. Not one told us it wasn’t real. They all said something akin to:

“Geez – you know this is really weird, clearly something is wrong, but I don’t have any more suggestions.”  “Try the pink pill? ” “Stop taking the Pink Pill and try the blue one.” “There is no spoon????”

I’ve created a go fund me page to ignite the funding to flesh out this website and dedicate it to chronic illness and people with lingering illnesses. I’ll find folks to interview who have gone into remission. I’ll find doctors who have expertise in this area. I’ll find caregivers – family members who helped their loved one through this ordeal.  I’ll look for patterns.  I’ll do the best lay research possible looking for root cause, symptom identifiers, and mostly — help for those with this horrible, immobilizing, disorder.

Chronic Fatigue Syndrome? It’s not just needing extra bed rest. It’s about a total change from type A driven hyperdrive people into those who quite often are nearly housebound if not bedridden. It’s about over-exertion to an extreme. It’s about someone who has about 20 % of what would be normal energy and it’s so easily depleted that recovery is minimal.  It’s about a medical industry that offers no cure, and often, disbelief in the syndrome as a whole. I know all about that. I read medical records going back 8 years. We found this one doc who didn’t really say in appointments but always wrote in notes that he thought my husband was simply fat and eating too many carbs.  Maybe — but in reality if he had the energy to do the active, vibrant lifestyle he preferred, he wouldn’t be eating bread and ice cream.  Something was terribly wrong, but the doctor wasn’t looking beyond his belly.

CFS / ME is a life sucking issue that is so far untreatable and incurable.

So what can we do?

We can join forces to provide support, knowledge, information, and hopefully a treatment.

We can look into what helps. what hurts, what works and what fails.  With your help, we can make this a better solution for all who suffer in isolation. Let’s do it. You don’t need to dump ice on your head. You don’t need to make a big show. Just help.

 

 

 

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