What It's Like Living with Multiple Sclerosisby Anne Windermere Patient Advocate
I met Joan on-line through her blog some months before I was officially diagnosed with Multiple Sclerosis. Joan is an excellent resource and support to anyone who has been told that they have this disease. She has been living with MS now for 22 years and what I get from reading Joan's story is that there is hope to live a happy and productive life despite having this disease. Joan embodies the spirit of resilience. I am most honored to introduce to you, Joan Wheeler.
Secondary Progressive MS
Have had MS for 22 years
When were you given your official Multiple Sclerosis diagnosis?
The "official" diagnosis finally came in 1999, although I was given a tentative diagnosis in 1995.
Did your diagnosis take a long time?
Yes. Looking back, we now know that I've had MS since 1986. A "maybe" diagnosis was given in 1995, and finally a firm diagnosis was given in 1999. Because my symptoms and attacks were all so different, it took a long time to connect the dots.
This is a very short version of my story, so I invite you to read the full version of my long road to diagnosis via my retrospective memoir here.
What tests did they do to get to the diagnosis?
EEG, brain and spine MRI, spinal tap, and blood work to rule out lots of other things like rheumatologic problems.
What was your reaction to hearing that you have this disease?
The first time I was told that I might have MS was on my 36th birthday in the ophthalmologist's office where I was being treated for optic neuritis. The doctor muttered something about sending me to a neurologist. When I asked why, he said "you have MS." After I said, "WHAT?" he said, "I thought you knew. You've had optic neuritis twice and you are in your mid 30's. Oh, and happy birthday." I thought the doctor was nuts because my idea of MS was of people in wheel chairs, but I could walk (I was just blind in one eye). I didn't understand at that time that optic neuritis is a common symptom of MS.
But four years later when the "official" diagnosis came through, I was actually hoping that I had MS and not one of the other more horrible options being considered such as a brain tumor.
What sorts of symptoms do you or have you experienced?
I have experienced severe vertigo and dizziness, optic neuritis, Lhermitte's sign (electric shock sensation when I look down), pins-and-needles from the waist down, severe spasticity/muscle spasms, tremors, foot drop, cognitive problems, emotional liability episodes (pseudobulbar affect), and intractable fatigue. Oh, and memory loss.
Currently, the biggest problem I have is the debilitating fatigue. Periodically I need to walk with the assistance of a cane and a brace. Wanting to have fun with this, I have designer canes that match my moods from www.fashionablecanes.com.
What meds, treatments, or alternative therapies have helped you the most?
I found that massage therapy and chiropractic have helped with tingling and numbness as well as the spasms and Lhermitte's.
Since starting Copaxone in 1999, I have not had a major attack so I credit it with slowing the progress of the disease.
Do you have a personal philosophy that has helped you to cope with having a chronic illness?
Somehow I know that the "universe" will give me everything I need... eventually. It may not be what I want and it is rarely provided on my timeline, but is always what I need, even if it is simply the strength to get through one more day. It is this strong faith and trust in a divine universal power (which has no name or form) that sustains me.
I see myself as a student who is constantly being challenged to learn about my strengths. This philosophy keeps me curious, and keeps me from feeling like a victim.
What advice would you give to someone who has just been diagnosed with MS?
Learn! Learn all you can about the disease and your body because you have to be your own advocate.
You are stronger than you know. Maybe not strong of body, but strong of character. You don't believe me now, but you'll surprise yourself when you discover what you can overcome, especially if you are armed with knowledge.
Learn to ask for help. The National MS Society (NMSS) and Multiple Sclerosis Association of America (MSAA) are great resources to get you started with a caring, supportive community of people who understand. They can help you to connect with resources and others who can help.
Accept that your story is going to be unique and different from anyone else's story, but you are not alone.
What is the worst thing about this illness?
For me, the worst thing is the fatigue. Because the fatigue is unpredictable, it's hard to plan my life when I don't know if I'll be able to get out of bed tomorrow.
Some days I'll wake up feeling great and commit to doing things, then a few hours later I'm exhausted for no reason.
Because fatigue is invisible, it's hard to explain to people why I suddenly can't do something. After a while, I begin to doubt myself and become my own worse critic, telling myself that I'm just lazy and using MS as an excuse. I know that's not really true. But when I'm tired, I forget.
Fatigue is not caused just by muscle activity like running or walking; it is also induced by brain activity. I can become exhausted after trying to solve a problem, even if I'm sitting down the entire time. Being in a room with a lot of activity, such as a meeting or visiting family at the holidays, wears me out completely.
If there is too much stimulation, I'll be exhausted in no time and for a long time.
Are there any silver linings to having MS? If there aren't talk about that too.
I'm much more attractive. Now that I have MS, people always tell me how good I look. I never heard that from anyone before I had MS!
Do you believe that we will see a cure for MS in our future?
Absolutely! I have seen amazing breakthroughs in the last 15 years and continue to be impressed with results coming out of the research community. It may be too late to repair the damage that already exists in my brain and spinal cord, but I believe that we will find ways to prevent myelin damage within the next 35 years.
If you could tell all the doctors and neurologists something that they would listen to, what would it be?
I would tell them this: "There is nothing typical about MS, so don't tell me that my problem is not real just because it is not "supposed" to happen or doesn't happen often or is not the typical pattern."
MS is as unique as the individuals who have it. But what we all have in common is each other. That's why support in all its forms (groups, blogs, chats) is so important. It's easy to forget to laugh, and support groups can help us to take this disease seriously while not taking ourselves too seriously.
I have been greatly helped by on-line support communities as well as the face-to-face groups in Maryland and Delaware. Face-to-face support group meetings are not for everyone. Some people are afraid of what they'll see or afraid they'll be doom and gloom meetings. I find them to be fun, and if they aren't fun I won't go back. At the suggestion of one of the Delaware MS support groups, I now host a twice-monthly chat room in hopes of reaching out to those in the Delaware area who are uncomfortable with meeting face-to-face but still need to connect. Of course, anyone can join even if they don't live in Delaware just by popping over to my blog on the 2nd and 4th Friday of the month between 7:00 - 9:30 pm.