There are many faces of MS. Not just the persons who are diagnosed with multiple sclerosis, but those around us who share in this experience. Last week I interviewed my mother to get her perspective on this disease.
Another important Face of MS to recognize is the one seen in the eyes of those you have the closest relationship with: your spouse or committed companion.
Dating when you have MS can present special challenges.
In 2005, I was actively dating and met a man on a blind date just one week before I mentioned tingling/numbness in my left hand/arm to my doctor. On the date we were both shy but had a great time talking about many things, including our love of music.
Hey, he was actually going to a symphony concert that evening with friends. This guy had potential. ;-)
It would be the next month while he was scratching my back that I noticed the numbness had spread over my shoulder blade to my spine. I made another doctor’s appointment and these would be symptoms which led to an eventual MS diagnosis.
That was five years ago and we are still dating at this time. I’ve invited Rob to share his perspective and experience with us today, to discuss how MS has affected our lives and our relationship. Please welcome Rob to the community.
We began dating in mid-May 2005. It was early June that you were scratching my back and I noted a difference on how my shoulder felt. This is what prompted my doctor to order an MRI. I honestly don’t remember, did I say anything to you about that at the time?
I don’t recall that you mentioned anything at that time.
**It can be a significant issue for folks living with MS to tell their friends or dates about their diagnosis. When was the first time I mentioned the possibility of MS to you? **
I believe you had mentioned your experience with optic neuritis that occurred some years before I met you, and the fact that that episode was a possible indicator of MS. I think this came up not long after you had a swimming accident. This was probably in the first month or so that we’d met.
Had you known anything about MS before that time? Did you have any experience with the disease?
I knew just a little about MS. In high school and college, I’d played the cello and thus remember learning about Jacqueline Du Pre, a well-known cellist who had MS. I recall participating in money-raising events for MS in elementary school as well. That said, I don’t know that I knew much about the disease itself other than that it was a nervous disorder and that a cure did not exist.
I remember crying on your shoulder a lot during 2005 and 2006. I was also angry and scared. How did you deal with all of the rapid changes which were taking place in our lives? Did you ever want to simply “bail” on the relationship?
I recall feeling a bit confused and uncertain about the matter. I knew you were upset and I wanted to do what I could to help you cope with the diagnosis. At the same time, I didn’t really know what I could do, particularly because I didn’t detect much change in your physical condition other than that you would complain of fatigue fairly frequently. Consequently, I tried to be conscious of your energy level and conditions that would affect your energy level (such as heat). But beyond that, I really didn’t have a good sense of how to react as you seemed more or less the same person physically. I never saw any reason to "bail" on the relationship. I enjoyed being with you regardless of whether you had MS or not.
We recently returned from vacation, a cruise to Alaska with the Multiple Sclerosis Foundation. What were your concerns during this trip? Did we manage those concerns successfully?
My chief concerns on the cruise were fatigue and spasticity. I’d been on a cruise before, so I knew that there were ample opportunities to be active for long periods of time. This made me worry that if you and I engaged in a busy day, you might experience a bout of fatigue that could limit your ability to function in something we wanted to do later. I’ve also become aware of the difficulties that spasticity poses for you. I was quite certain that some of the excursions we had planned would involve a good deal of walking and thus I was worried that you would have trouble with your legs.
I think we did manage these two issues fairly well on the trip. The busiest two days of our trip were back-to-back excursions in Juneau and Skagway which kept us going all day. I know you had some trouble with spasticity after we visited the Mendenhall Glacier in Juneau, but you seemed fairly well able to recover by taking the right medication, getting enough food and rest, and using the hot tub to help your legs. Thankfully we had 1.5 days at sea after these two busy days which gave you the opportunity to rest quite a bit before our third excursion in British Columbia. You did the bulk of the work, obviously, as it was your body that was affected by these problems but I did try to be mindful of your feedback to me as we were out and about on those two days. I also tried to think ahead a little bit in terms of planning rest stops and not biting off too much at one time.
As an example of planning ahead, I think we made a good decision to abandon a walk back to the cruise ship from downtown Victoria, BC near the end of our third and final excursion. You mentioned that you’d be willing to do this rather than pay for a bus or taxi, but I felt it was probably too far, especially after a fairly busy day. We eventually decided to take a bus and I think you and I both agreed it was the right decision. Considering that we had to pack our bags that night since we were disembarking the next morning, we definitely made a smart move. Taking the bus instead of walking allowed you to preserve energy that helped us pack and leave the ship without difficulty. Had we done that walk (1.5 to two miles I think), your energy level likely would have been hit pretty hard and you probably would have had a harder time with our end-of-cruise responsibilities.
Many folks diagnosed with MS have experienced loss. Loss of relationships, loss of physical abilities, loss of jobs, loss of cognitive skills, loss of confidence, etc. The fear of loss itself is understandable. As someone affected by MS through our relationship, what do you fear the most?
Well I try to stay optimistic on this front. I have faith that on-going scientific research will produce ever more helpful medications for MS and hopefully a cure some day. However I think my greatest concern for you is that your MS may someday really impair your ability to play and teach music.
We talked last weekend about employment and disability. I was self-employed before MS came into the picture. I remain self-employed for several reasons: a) I love teaching music lessons, b) I enjoy being in charge of my own hours, c) I couldn’t work a 40-hour, nine-to-five job if I really wanted to, d) I enjoy the freelance writing work, and e) I couldn’t afford to go on social security disability. oes my lack of a "regular" job bother you?
No, not at all. I know you love teaching music and free-lance writing. Therefore I think your MS is largely irrelevant to your employment choices, as you’d probably elect to make the same choices, MS or not. Does MS have an impact on the workload you feel you can handle? Probably yes, but as we recently discussed, I don’t think it has a significant impact because of the control you have over your work schedule.
I know that we both hate the disease, but you are very encouraging when I feel down or insecure. Is there anything positive about my having MS?
Well it’s obviously not pleasant knowing that you have MS, but I suppose a couple of positives are that I’ve learned a little more about the disease and how it works. This in turn has (hopefully) made me more sensitive to how I might be able to interact with those people who have MS. I need to keep in mind, however, that each person is different and moreover, MS affects each person differently.
You have been great to answer these questions today. What else might you like to share with the community?
I suppose I might just add that I hope folks affected by MS try to keep the faith that we’ll eventually find a way to have this disease brought under control some day. From what I understand, we’ve come a long way in treating MS so that’s reason to believe that we’ll continue to make progress against MS.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.