MS is such an invisible disease. Very few of the symptoms can be seen or detected by others, and only if they are really paying attention, they may notice tremors, inability to walk, balance impairment, speech problems, or bladder/bowel issues. Many MS symptoms cannot be seen, such as pain, spasticity, numbness, itchiness, fatigue, vision problems, dizziness, cognitive problems, or emotional changes.
Most of the time I do not look disabled. I am blessed to be able to move around easily, only getting noticeably fatigued with severe heat or exertion. Symptoms such as spasticity or pain respond to medication, exercise, and rest. Very rarely have I lost bladder control in public and even then I was able to go home to get cleaned up and change clothes.
To look at me, you can’t tell that sensation is diminished in my feet and ankles. My proprioception is affected and I dare not stand with my feet together and close my eyes for risk of losing my balance and falling. I am careful how I place my feet on the ground to avoid the ‘kissing the sidewalk’ symptom which I’ve experienced on a number of occasions. Those face plants are no fun and can cause extreme embarrassment and pain.
When invisible symptoms are hard for others to see...or hear.
Last weekend one of my invisible symptoms - impaired balance - caused a public disruption. I was in the airport in Newark, New Jersey, when TSA agents at the security checkpoint repeatedly asked me to stand in the body scanner machine. I’m not sure what went wrong the very first time I stood there. But in repeated attempts in the machine, the agents complained that either my feet were not far enough apart, or my hands weren’t high enough, or I wobbled which made the image blurry.
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Invisible MS Symptoms Can Cause Frustration and Mask Disability
Showing posts with label Invisible Symptoms. Show all posts
Showing posts with label Invisible Symptoms. Show all posts
Friday, October 30, 2015
Monday, September 21, 2015
Quality of Life With MS Affected by Hidden Symptoms
A recent study shows that ‘hidden’ factors have the capacity to influence quality of life (QoL) for MS patients. In clinical trials, traditional measures of quality of life for MS patients center around disease activity and physical disability progression. Measuring things such as relapses and lesions is much easier than measuring non-medical issues related to quality of life; but it reflects only part of the patient’s experience.
Quality of life can be complicated. MS patients may respond well to treatment and be free of significant symptoms, but still have poor QoL due to factors such as depression, inability to work, and relationship issues. They may “look fine” but have a reduced quality of life. Conversely, patients who have accumulated significant physical disability may continue to participate fully in life and view their own QoL in a positive light.
While MS patients need to learn to cope with visible and invisible issues related to MS, discussing these issues with family, friends, or medical professionals may be difficult. Patients and providers both may be reluctant to discuss invisible issues during routine clinical visits. In addition, the problems may be complex and difficult to manage because of the lack of efficient solutions.
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Quality of Life and MS
Friday, May 1, 2015
Masks of Invincibility
In my normal day-to-day life, I am not confronted with the dilemma of “putting on a brave face” for those around me. My loved ones appreciate the wide variety of experiences and challenges which living with MS and RA may present. But for the past couple of weeks, I have been confronted with the public-face vs private-face contradiction which so many people living with chronic disease encounter.
As a private music teacher, April is often the time I push a little harder to help fine-tune practice and performance techniques of students while encouraging confidence as they prepare for contest performances and our annual recital. It’s a stressful, but exciting time, for both teacher and student. However, trust me when I say that getting ready for the big recital is probably much more stressful on the teacher than the students.
April is also the month during which our state region hosts the annual Solo and Ensemble Festivals at which I accompany my own private students, as well as several other young performers who are required to have an accompanist. This has become a significant source of income which balances the fact that most of my private students do not continue lessons during the summer. Too often it’s feast-or-famine for a freelance musician.
This year I have been working with 21 students in preparation for 25 performances, totaling more than 35 distinct movements of music, in addition to the digital recording of two pieces for one student’s “introductory” video for her intended private teacher at college next year.
Some of the selections of music are not too challenging, but others have been so difficult that I’ve had to put in several additional hours of practice time outside of rehearsal time with each soloist. One piece in particular seems nearly impossible to perform as composed, and indeed is within our short timeframe, even with an estimated four hours of additional personal practice time put in so far for that piece alone.
But yet, it is my job to do my best, and to do so with a cheerful and encouraging demeanor. I can’t simply say, “that crazy tempo you want to play, which is faster than any of the professional recordings I’ve studied in preparation for our time together, simply ain’t gonna happen.”
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You're Doing Great! And Other Masks We Wear
As a private music teacher, April is often the time I push a little harder to help fine-tune practice and performance techniques of students while encouraging confidence as they prepare for contest performances and our annual recital. It’s a stressful, but exciting time, for both teacher and student. However, trust me when I say that getting ready for the big recital is probably much more stressful on the teacher than the students.
April is also the month during which our state region hosts the annual Solo and Ensemble Festivals at which I accompany my own private students, as well as several other young performers who are required to have an accompanist. This has become a significant source of income which balances the fact that most of my private students do not continue lessons during the summer. Too often it’s feast-or-famine for a freelance musician.
This year I have been working with 21 students in preparation for 25 performances, totaling more than 35 distinct movements of music, in addition to the digital recording of two pieces for one student’s “introductory” video for her intended private teacher at college next year.
Some of the selections of music are not too challenging, but others have been so difficult that I’ve had to put in several additional hours of practice time outside of rehearsal time with each soloist. One piece in particular seems nearly impossible to perform as composed, and indeed is within our short timeframe, even with an estimated four hours of additional personal practice time put in so far for that piece alone.
But yet, it is my job to do my best, and to do so with a cheerful and encouraging demeanor. I can’t simply say, “that crazy tempo you want to play, which is faster than any of the professional recordings I’ve studied in preparation for our time together, simply ain’t gonna happen.”
Read this post in its entirety:
You're Doing Great! And Other Masks We Wear
Tuesday, March 17, 2015
What Does Sick Look Like?
When someone suffers with a cold, infection, or allergies, it becomes much easier to ‘see’ the sickness. Accompanying each of these conditions is inflammation, the kind that often causes redness that is visible to the observer. If we see someone with signs of infection, the outward signs make it easier to avoid that person to reduce the risk of picking up the offending virus or bacteria. Very helpful, in fact, because who ‘wants’ to be sick?
Diseases such as multiple sclerosis also involve inflammation, but not the kind that is visible to the naked eye. Our inflammation is internal, occurring in and around the central nervous system, about as far inside the body as you can get. This type of inflammation can only be detected by special tests.
Do you want to look sick?
Now that’s a tough question. I don’t believe that any of us really want to look sick. But we do appreciate empathy for the unseen. It’s difficult to feel understood when others can’t fully appreciate how complex the effects of our disease are.
Even when you possess the make-up, hair, and clothes of a talk show host and a smile that brightens a room, it’s hard not to feel sick if you don’t feel good or have significant physical or cognitive dysfunction.
What do they really mean?
I suspect that when someone says, ‘But you don’t look sick!”, they really mean to express an acknowledgement that you are facing and overcoming an unknown challenge with an enormous amount of grace and strength.
Or, perhaps, they simply want you to know that you look great!!! Your physical, emotional, and spiritual strengths are shining through the many challenges and disappointments of living with MS.
At risk of annoying some readers, let me suggest that the next time someone says, ‘But you don’t look sick!”, please respond with an enthusiastic, “Thank you!!” and smile with the knowledge that you are stronger than MS.
Read this post in its entirety:
"But You Don't Look Sick"
Diseases such as multiple sclerosis also involve inflammation, but not the kind that is visible to the naked eye. Our inflammation is internal, occurring in and around the central nervous system, about as far inside the body as you can get. This type of inflammation can only be detected by special tests.
Do you want to look sick?
Now that’s a tough question. I don’t believe that any of us really want to look sick. But we do appreciate empathy for the unseen. It’s difficult to feel understood when others can’t fully appreciate how complex the effects of our disease are.
Even when you possess the make-up, hair, and clothes of a talk show host and a smile that brightens a room, it’s hard not to feel sick if you don’t feel good or have significant physical or cognitive dysfunction.
What do they really mean?
I suspect that when someone says, ‘But you don’t look sick!”, they really mean to express an acknowledgement that you are facing and overcoming an unknown challenge with an enormous amount of grace and strength.
Or, perhaps, they simply want you to know that you look great!!! Your physical, emotional, and spiritual strengths are shining through the many challenges and disappointments of living with MS.
At risk of annoying some readers, let me suggest that the next time someone says, ‘But you don’t look sick!”, please respond with an enthusiastic, “Thank you!!” and smile with the knowledge that you are stronger than MS.
Read this post in its entirety:
"But You Don't Look Sick"
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