Being Disabled is a Full-Time Job!
If you’ve had multiple sclerosis for at least a few years, you’ve already told yourself that indeed, being disabled is a full-time job. Let’s enumerate the reasons and remind ourselves why we are so gosh danged exhausted.
If you’re still working, it might feel like you’re holding down two full-time jobs: a conventional job for which you earn a paycheck, and the other you do without monetary compensation - what we’ll call disease management.
Disease management includes:
1. Daily struggle
The physical, emotional and spiritual effort of getting yourself through a typical day.
- Temperature maintenance: We must follow the weather more closely than any meteorologist and be more accurate in our predictions than the best of them. Getting caught in sweltering heat without cooling protection and shelter can bring on Uhthoff’s phenomenon, a temporary condition that feels like a full-blown relapse, rendering us immobile and incapable of clear thought, vision and speech.
- Fatigue monitoring: Fatigue can be the most difficult symptom to manage. Energy units are in short supply, so we must be miserly and guard our precious stock. Otherwise we might blow ourselves out, crawl into bed at 3 p.m. and stay there for the rest of the evening. We might try stimulants, but then have problems relaxing and need another drug or two to counteract the wakefulness. Some patients who exercise regularly and otherwise avoid prescription drugs have reported an improvement in their energy. If fatigue is a major player in our daily quality of life, we might see better outcomes if we invest time and effort in exploring various treatments. Depending on the patient, fatigue can eat up most of those unpaid full-time hours.
2. Medication monitoring
This includes making sure we take our prescribed drug treatments at the proper time and in the assigned dosages. Time is used to report negative side effects to our doctors, perhaps schedule an appointment to discuss such problems. Finding the meds that work for us involves trial and error, a major use of unpaid full-time hours.
3. Keeping medical appointments
Showing up for our regularly scheduled neurology and PCP visits, not to mention regular or occasional sessions with the urologist-ophthalmologist-gastroenterologist-endocrinologist-rheumatologist-OB/GYN--ENT, et al. A half-hour appointment can eat up hours of waiting before being called back to the exam room and spending extra time being thorough with your doctor during the appointment.
4. Equipment maintenance
Keeping mobility aids functional and available by replacing and repairing worn or broken canes/walkers/power chairs/wheelchairs/ metal crutches/AFO braces/Walk-Aides/pain and ITB pumps/oxygen tanks. Also includes computer software (voice recognition) and hardware that accommodate those with limited function. Maintenance can eat up many hours of unpaid time—but it’s something that cannot be avoided.
5. Troubleshooting medical bills
This can be one of the most time-consuming, stressful non-paying jobs on the planet. Doctor’s billing departments can screw up coding your procedures, for example, causing your insurance carrier to deny coverage and sticking you with a high bill. Medicare is notorious for being picky about medically-necessary tests, so we might have to request a letter from our doctors explaining why they ordered the test. Generally it takes a month to generate a new bill, so troubleshooting can take months and months of phone calls and waiting.
If you’ve been keeping track of hours spent on each of the above activities, you might have found that you’ve not only put in another full-time job on them, you’ve even clocked overtime. It’s no wonder you’re tired and broke. After working a paying job 30-40 hours per week, you’ve been working overtime on disease management for no pay.
How many specialists did you see before finding "The One"?