Q: You authored an amazing book, "Faulty Wiring: Living With Invisible MS" which I recently completed and enjoyed very much. Can you tell us about your book and what readers can expect? What inspired you to write it?
This book is my attempt to explain what it’s like to live with the hidden impact of this disease. I describe the effects of anxiety, depression, bladder dysfunction, cognitive impairment and fatigue, and discuss some of the unique challenges these invisible symptoms present. I also share some of my greatest fears when I was diagnosed with MS and the lessons I have learned since then. It’s my hope that people who DON’T have MS will read it and say, “I had NO idea. But now, I understand what you’re going through.” And that people who DO have MS will read it and say, “Yes, that’s exactly what it feels like.”
Q: Can you tell me a little about your diagnosis? What were your initial symptoms, and how are you doing now?
A: I was diagnosed in January 2002, so I’ve had MS for more than a decade now - and probably much longer than that. For years, I’d been struggling with insomnia. I couldn’t fall asleep, stay asleep or get back to sleep. And I was up and down to the washroom countless times each night with an urgent need to pee.
I had two young children at the time, who were both poor sleepers, so I attributed my sleep disruption to that. And my family physician thought my bladder problems were a consequence of childbirth and advised me to do some Kegel exercises. But the issues persisted and worsened to the point where I was barely sleeping at all - and that led to chronic fatigue, lowered mood, and irritability.
And then I started having panic attacks that would strike me out of the blue and were absolutely terrifying. Eventually, they became so frequent and severe that I was hospitalized. There, I was diagnosed with clinical depression, put on an antidepressant, and then released to the care of a psychiatrist, who I continued to see for several years. And my symptoms stabilized (though the bladder issues persisted).
Then, a few years later, I started having problems again - headaches, bouts of uncontrollable crying, dizzy spells and more panic attacks. The onset was so dramatic - and so inexplicable - that my psychiatrist thought there was something wrong with my medication. He actually sent it back to the manufacturer to have it tested! But the medication was fine and we were left with no explanation for why my symptoms had flared so suddenly.
But then, one side of my face went numb, and that signaled to my family doctor that there might be a neurological problem. She sent me to a neurologist, who ordered an MRI and it showed that I had several lesions on my brain. And that’s when I was diagnosed with MS.
So, I guess the moral of my story is that MS can sometimes present in unexpected ways. And its initial onset can be psychiatric - which may surprise some people, who are unaware of the link between MS and mental illness. Many psychiatric disorders, including depression, anxiety, panic attacks, bipolar disorder, and OCD occur more frequently in people with MS. And the suicide rate is also higher.
It’s important for patients AND physicians to be aware of this connection and to be vigilant, because the effects of these psychiatric problems can be devastating. It was the combination of sleep disruption and anxiety that most affected my ability to work. If someone had been able to link my psychiatric symptoms to an underlying neurological disorder sooner, I may not have sustained as much damage to my brain. But it didn’t occur to anyone that it could be MS. Even my psychiatrist was fooled!
My anxiety and depression are now under control, I no longer have any panic attacks, and my sleep has greatly improved with the recent addition of a 4,000 IU daily supplement of vitamin D. Fatigue and cognitive impairment are my greatest challenges, and my bladder problems have worsened. I take Oxybutynin for urinary urgency, but can no longer empty my bladder completely. Next month, I’m learning how to self-catheterize. Otherwise, I’m doing well, with some numbness in my left hand and foot, but no mobility impairments.
Q: What advice would you give to newly diagnosed patients?
A: I wish I had a magic formula for getting through an MS diagnosis. But I don’t think I handled my own particularly well. I was consumed by catastrophic thinking and worst-case scenarios. My first thought was, “OMG, I’m going to wind up in a wheelchair!” and I got stuck in that negative frame of mind.
But here I am, 13 years later, still walking…and running…and climbing stairs - without a mobility aid. In many ways, I’m doing better now than I was before my MS diagnosis. So all of that negative thinking was just wasted energy.
If I knew then, what I know now, I’d probably say to my newly diagnosed self: “Stop and take a breath. Don’t worry about things that may never come to pass.”
I think our minds automatically go to that dark place in the beginning, and we’re so frightened by the prospect of significant physical disability that we don’t entertain the possibility of a better outcome. Yes, the effects of MS can be devastating. And it is a legitimate concern. But it’s not an inevitable consequence. Many people do quite well.
So, I would tell them to live in the present and be hopeful. And then I would refer them to this post: Newly diagnosed with multiple sclerosis? You’ve Got This!
Q: What and/or who inspires you the most?
A: Without question, my Dad has been my greatest inspiration. He died a couple of years ago, but he taught me many lessons that I apply every day in living with MS. Like me, he was a storyteller. Not a writer, but a man with a gift for the spoken word, who could make you laugh - even in the midst of heartache. No matter what the situation, he could always find the humor in it. I have that ability too - and it has served me well in those moments when it probably makes more sense to sit down and cry. I think it’s funny when I find my cellphone in the fridge or catch myself applying hair gel to my armpits. I’m able to laugh at my silly mistakes or when things go wrong - and I have my Dad to thank for that.
I’ve been thinking about him a lot over the last few weeks, as I’ve dealt with a health crisis at home. He was a caregiver - first for my mother, and then for his second wife - for many years towards the end of his life. And I’ve recently assumed that role, as my husband recuperates from a series of bowel surgeries. It used to bother me when I’d ask my dad how he was doing and he’d say, “I’m just taking it one day at a time.” For a man so accustomed to looking on the bright side, it sounded to me like he was giving up on life. But I get it now. Full-time caregiving - like living with chronic illness - is an exhausting, and often overwhelming exercise. It can bury you, if you don’t break it into manageable chunks.
So now, when I’m feeling tired and discouraged, I think of him and hear his voice - urging me to keep going.
“Just one day at a time, Cutie Pie.”
|Suzanne's Father with her son, Steven|
Q: What have you learned about yourself since being diagnosed?
A: I’ve learned that I’m stronger, more resilient, more determined, more persistent, more disciplined, and more courageous than I realized. I think I had these qualities before, but I’ve never drawn on them to the extent that I have since being diagnosed. Chronic illness has a way of bringing out the best - and the worst - in you. I’ve let go of some of the traits that no longer serve me well - like perfectionism and my fear of failure - and have embraced those - like patience and flexibility - that help me to cope.
I keep a quotation on my desk to remind me that I have the grit to prevail:
In the midst of winter, I found there was, within me, an invincible summer.
- Albert Camus
When I read it on the days when I’m doing well, I take satisfaction in knowing that I’ve handled whatever life - and MS - has thrown my way. And on the days when I’m doing poorly, it encourages me to dig deep within myself to find that inner core of strength.
Q: Can you tell me about your website, and what readers can expect to find there?
A: What I’ve tried to create through my website, Invisible Multiple Sclerosis, is a one-stop shop for information about MS. There are some terrific resources available on the web, but it can be time-consuming to find them - and often difficult to judge their credibility. By sifting through what’s out there, and assembling the most reliable information in one place, I’m trying to connect people with the information they need more quickly, so they don’t have to search through multiple sites.
On invisiblems.com, readers will find links to website information, online articles, blog posts, videos, podcasts and studies - organized by topic, so that it’s easier for them to zero in on the information they’re looking for. The site has resources for the newly diagnosed, and sections on fatigue, cognitive impairment, bowel and bladder problems, emotional changes, sleep disturbances, parenting, vitamin D and exercise. And in the coming months, I’ll be adding new information on caregiving, employment, stress management, CAM therapies and other MS symptoms, including pain, sexual dysfunction and spasticity.
The site also features my blog (Faulty Wiring), information about my book, lists of other books and websites I recommend, and some tips for managing MS.
The emphasis throughout is definitely on the invisible impact of MS, as the name of the site suggests, but I think anyone living with this illness will find the resources that I’ve included helpful. My Facebook page, Invisible Multiple Sclerosis, focuses more narrowly on the hidden symptoms of MS and the issues they present, but my website content is much broader than that, covering topics of interest to everyone.
I’m also very active on Twitter (@suzannemrobins), where I tweet exclusively about MS. So, if your readers are looking for a focused feed that will keep them up to date on the latest news and research on MS, and will point them to interesting blog posts and articles, they may want to follow me there. And I have some topic-specific MS boards on Pinterest at Invisible Multiple Sclerosis.
Suzanne's Book on Amazon: