We’ve become so accustomed to medical miracles that we tend to assume that people are only disabled because they don’t want to get better.
Certainly, I’ve been accused of it myself.
In the first few years of being off work, I did everything I could to get better: I ate healthy food, did as much walking as I could tolerate, took vitamins and any non-prescription remedy I could get my hands on, slept as much as I could, and tried, desperately, to get well. The missing component, though, was the one that I had no ability to do for myself: the pain and sleep problems were far in excess of what could be treated with non-prescription remedies. I needed a prescription and my repeated requests fell on deaf ears.
Someone suggested that I could get my hands on Benadryl, which is the active ingredient in some sleeping pills, so, just take a couple more every hour until I found the dosage that would let me fall asleep. I tried it. I had an interesting out of body experience, but I didn’t get any sleep that night. I needed something stronger than even half a bottle of Benadryl.
I have been fighting sinus headaches for 30 years. I have one today where my sinuses are so swollen that my teeth and jaw hurt, too. There again, I have done everything that I can – I moved from a cool damp climate to a warm dry one, and stay indoors almost 24/7 half the year during rainy season and allergy season, but all my bedtime preventive measures last night didn’t prevent me from waking up at 1:15 AM in severe pain. By that point, my face was so swollen that I couldn’t stand the weight of the heating pad on it. With that much pain, I never did get back to sleep.
I already know that Urgent Care will not give me a prescription for anything unless there’s an infection; if my sinuses are just swollen, as they are today, they’ll send me home with instructions to do what I’ve already been doing: I’ve rubbed a liquid pain reliever on my gums, taken Advil, inhaled VapoRub, put a heating pad on it, and given it hours to ease up. If anything, it’s worse than it was at 1:15 AM; it’s spread from my sinus and jaw upward to my eyes and temples.
The first time I had a sinus headache this bad, I went to the dentist and had the most-painful tooth pulled. The tooth was in perfect condition, not even the beginnings of a cavity; as soon as the dental anesthesia wore off, we realized the problem had never been the tooth ... the sinus was still swollen and the teeth around the extraction still hurt. I could have all the teeth on that side pulled and still be in pain, because the problem is the swollen sinus that Urgent Care won’t do anything about because it’s not infected.
A friend with similar problems told me her doctor did surgery to give her some relief. That’s something I can’t do for myself, and if your medical plan requires that your PCP give you a written referral to the specialist, and the PCP won’t write that referral, you can’t get the surgery, even if you offer to pay for it yourself. And without the surgery, there’s no relief.
People who rehab after serious accidents don’t do it themselves. They don’t crawl out of the wrecked car and go directly home: they get weeks of medical care in hospitals and physical therapy. If they need prosthetics to help them function, they get them. On the other hand, CFS patients are typically sent home with the erroneous information "there’s nothing we can do for you", and then blamed because they cannot return to work without the proper professional help. The assumption is made that the patient doesn’t want to work, not that the doctors aren’t able to help.
Eventually I did get an effective sleeping pill. After a few months of sleeping properly, my immune system revved up enough to start attacking the virus that, uncontrolled, was making me sicker and sicker. No amount of valerian, hot baths, warm milk, or relaxation CDs (or combination thereof) had been able to get me to sleep in the previous three years because the problem was too complex for a simple solution. That proved my point that if a doctor had been willing to give me a prescription sleeping pill, instead of excuses, I might have been able to get well and go back to work. I’d done the best I could with the things available to me without a prescription and none of them were strong enough for the massive intervention I needed.
The same thing with pain pills. Hot baths, heating pads, enough Advil to give me an ulcer ... nothing I could do for myself was strong enough. According to Jeanne Hess, RN, the best time to take a pain pill is at Level 3; if you wait till you reach 4-of-10, it may not work. I was dealing with 7,8,9 and 10 with nothing stronger than Advil; for most of a year, it never got down to a 3 where I had the best chance of nipping it in the bud. Yet even reporting Level 7-10 was not enough to get me a prescription pain pill. It’s been suggested that the fact that I made the super-human effort to walk into the doctor’s office (instead of hiring a man to carry me in) and approached the doctor rationally instead of screaming were probably factors in not getting the needed prescription. A doctor who stereotypically expects men to be stoic and women to be helpless and in tears isn’t going to believe that a woman is in severe pain if she’s not hysterical and is stoically standing on her own two feet through sheer willpower. But I’ve gotten false diagnoses of emotional problems while showing no emotion at all, so I didn’t want to burst into tears and give them more justification for writing "depression and anxiety" in the records when the real problem was neurologic pain, or be carried in to support the theory that I’m just looking for excuses to have someone do things for me because I’m too lazy to even walk.
It took 7 years before I got a prescription pain pill. Again, the change wrought by something that I could not obtain without the complicity of a medical professional was significant.
Medical miracles require a combination of medical help, luck and patient persistence. But without the first one, it’s highly unlikely that a patient will be able to cure herself of something as disabling as severe CFS. I managed to keep myself out of the hospital, which is a miracle in itself, but once the doctors let me deteriorate as far as they did without proper medical treatment, the self-help I could do was more a matter of not getting worse than of getting better.
This Awareness Weekend, let’s put the blame where it belongs: on the pharmaceutical companies that haven’t come up with a magic pill, on the FDA who haven’t approved the one thing that has been shown to help CFS, on the doctors who think that writing "depression" in the file relieves them of any further responsibility to find something that helps the patient. But let’s stop blaming the patient for not being able to get better when the things they need to get better aren’t available to them. If I could have written my own prescriptions for sleeping pills and pain pills, I have no doubt that I would’ve been back to work full-time in a few months.
It’s never right to blame the victim for things beyond their control. I did right all the things that I could, but there were many things I had to rely on others to do for me, not the least of which was writing prescriptions for the things theexperts say will help.
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