My name is Steve and I live with a disability. Among the health issues I live with, the most limiting to me day-to-day is what's called Fibromyalgia or Chronic Fatigue Syndrome, but those seem to be misnomers. What I live with is (or will be) called Myalgic Encephalomyelitis, a condition first diagnosed in 1959. I plan to write on this as I go, but for now, here's the short version of what I have lived with for more than a decade. Its lifted directly from the front page of NAME-us.org, an advocacy group for ME and (heh) me.
Most diagnostic tools and treatments have been denied to the majority of patients, due in large part to government and insurance industry politics. As a result, most patients are left to suffer lifelong disabling chronic progressive illness, and die significantly earlier than the norm with minimal or no treatment. Many lose some or all of their livelihoods: jobs, homes, families. Most are maligned in the same ways that MS and AIDS patients were in previous decades. And as a result, most have significantly shortened life spans (averaging roughly around age 57) due to complications arising from ME - usually cancer, heart failure, other organ failure, various complications, and often suicide due to little hope of treatment for sometimes unbearable pain and prolonged poor quality of life.This is what I have been through in short form. I did lose my job, some extended family, most of my able-bodied friends, I have been maligned medically and personally by those who did not know me. I fought of thoughts of suicide more times than I can recall. Just so we're clear, I have talked with my family and promised my wife and kids that I won't die or--it should go without saying--let them die if I have any say in the matter.
I live with chronic pain. I have seen all kinds of doctors, chiropractors, nurse practitioners, physical therapists, rehabilitation therapists and used all sorts of conventional and alternative medicine treatments. This constant effort to regain or even just stem the progression of my symptoms has drained every resource I had and has left me and my family with a mountain of debt. The results are not promising, having varying degrees of success, mostly in the little-to-no-improvement category.
Despite all of this effort to get well, there are people out there who would point to me and other patients like me and say that we want to be sick, that we are making it up or actually causing ourselves (intentionally? unintentionally?) to manifest these symptoms. Sometimes they allege all three at once, which is proof that they don't really understand the problem.
So that you don't think this to be old information, In early 2014, I was told by one of my doctors that I didn't have a disease. Admittedly, he is a dermatologist, but ignorance doesn't stick with just one area of medicine or even the profession. After I asked him what he thought about it, said, "I don't believe it [Fibromyalgia] is real." In disbelief, I actually repeated what he said, and he confirmed that I heard him correctly. Had he not been on his way out of the examining room, I might not have simply quit seeing him after that. That he wasn't kidding was born out by his actions, which I will not discuss to protect his identity.
To really understand what my life is like, I'd have to detail every little part of my life, and I don't want to go overboard and bore my readers. At the risk of someone misunderstanding what ME is, I will say that,
- I am housebound without a wheelchair, which fits in the back of a vehicle, but we have a ramp instead of a lift, which means I can't use my chair on my own
- I must remain semi-reclined or in bed except for a few hours at a time. Afterward, I must rest or sleep for hours to recuperate my energy
- I can't recharge significantly. More regarding this below
- Despite being profoundly fatigued, I seldom can fall asleep easily usually because of pain or neurologic symptoms similar to RLS and other syndromes
- My wife has been working to provide for our family since shortly after I lost my job. The stress of doing both our jobs means she is twice as busy and twice as tired
- We do not have vacations, last camped in mountains 30 minutes away in 2009 (which, if you knew my love for them, would break your heart), and traveling for family holidays is the only escape my kids remember much of
- Watching TV
- Talking with someone
- Getting a haircut or a dental cleaning
- Riding in a car, driving is more draining
- Typing these words
I'm taking a break for now. I wish I were kidding. Soon I'll tell you how I've learned to pace myself and my objectives for the future personally and for others with ME.
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