Interview with Faulty Wiring author Suzanne Robins

I was recently asked by MS blogger Meagan Freeman to answer a few questions about my book, Faulty Wiring: Living with Invisible MS. And with her permission, I’m reprinting my answers here. Meagan is a nurse practitioner and mother of six (!), who lives in California and was diagnosed with MS in 2009. I encourage you to check out her wonderful blog, Multiple Sclerosis, Motherhood and Other Traumatic Experiences, and her new book, The Hero of the Story.

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?

Frustration was my initial motivation, to be honest. I was having a hard time explaining my illness to other people, because most of my symptoms were invisible. Even some of my closest friends didn’t seem to “get” it – and I often came away from my conversations with them feeling like a fraud or a liar. So I did what I’ve done throughout my life to express myself and make sense of my experience: I decided to write about 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.”

Can you tell me a little about your diagnosis? What were your initial symptoms, and how are you doing now?

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. Otherwise, I’m doing well, with some numbness in my left hand and foot, but no mobility impairments.

What advice would you give to newly diagnosed patients?

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!

What and/or who inspires you the most? 

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.

SuzanneDad

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.”

What have you learned about yourself since being diagnosed? 

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.

Can you tell me about your website, and what readers can expect to find there?

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.

CoverSept12a

Back in the swim of things: aquatic exercise and MS

The water envelopes me as I slip beneath its silky surface. A familiar and welcoming embrace. As a Piscean, I am in my element. I have always been a fish.

As a teenager, I used to drag myself out of bed before dawn on Saturday mornings to train as a lifeguard and swimming instructor. While most of my friends were still sleeping, I was swimming endless laps at the pool. My summers were spent teaching little ones to swim. One of the best – and most rewarding – jobs I’ve ever had.

I’ve returned to the pool in recent months, for the first time in years, in an effort to get more exercise. Regular physical activity – and especially aerobic exercise – is supposed to be good for people with MS. And aquatic exercise is particularly beneficial.

It’s often possible to move in the water in ways that are impossible on land. It’s a cooling environment that places less stress on the joints and allows for greater range of motion. You’re well supported, so there’s no fear of falling. And it’s easier to build up muscle strength by working against the resistance of the water.

The benefits are obvious. But with MS fatigue and other challenges, there are days when it’s really hard to even contemplate going to the pool or the gym. When you can’t even lift your arms to shampoo your hair, or you’re having trouble getting out of bed or getting dressed, even going for a walk can feel like a marathon.

But even a little bit of exercise can make a difference. And so I push myself to go – even on days when I don’t think I’m feeling up to it. If I can overcome that physical inertia and get myself to the pool, I can usually find the energy to swim – not as far as I used to, mind you, but far enough – and often enough – to reap some major health improvements.

After months of swimming every week, I’m feeling a lot better. My sleep has improved and I’ve got more energy. I’m experiencing less pain in my arms and feet, and less spasticity. And I’m thinking more clearly. Even my neurologist has noticed the difference. He couldn’t believe how much stronger I was when he examined me during my last visit. My upper arm strength, in particular, has improved dramatically.

And there have been psychological benefits too. When I’m swimming, I feel weightless and free – unburdened of my daily cares and physical challenges. Cocooned like a baby in a mother’s womb, I feel safe and supported by the water. I am conscious only of the rhythm of my strokes and the regulation of my breath. An aquatic mantra that induces a meditative state that – despite the physical exertion – is incredibly relaxing.

My mood is always better when I leave the pool. I feel empowered – and proud of myself for doing something to improve my health. And I’m reminded every time of my youthful ambitions and my love for the water.

Being back in the pool has reconnected me with parts of myself that I had lost. I was so confident as a teenager, and so determined to achieve my goals. I never questioned my abilities and I didn’t let anything stand in my way. And when I’m swimming, I can feel that girl again, inside of me. I remember her. And I believe that I’m still capable of achieving great things.

Related links:

This Swim for MS video was produced by the Multiple Sclerosis Association of America.

6 holiday promises I WILL NOT break!

I’m the LAST person you should be turning to for advice on surviving the holidays. Every year, I do too much, push myself too hard, and wind up crashing. And I spend the first week of January flat on my back in bed.

Clearly, something’s got to change.

So this year, I’m shaking up my game plan. Instead of waiting for New Year’s to make my resolutions, I‘m making some changes at Christmas instead.

Here are 6 holiday promises I WILL NOT break:

I will focus on spending time with my kids. 

I have two grown children, who live far away from home. I only get to see them two or three times a year, and I’m really looking forward to having them both home for a week this Christmas. It’s easy to forget how precious that time is in the rush of the season – and I must confess that, in the past, I’ve been guilty of putting other priorities ahead of them. I’ve been too preoccupied with making sure that the house looks nice and cooking special meals for our guests. I know my kids enjoy the home-cooking too, but in trying to “put on a show” for everyone else, I sometimes feel like I shortchange them. I’m so exhausted by the end of it all that I’m not entirely there. And instead of enjoying the fun, I find myself enduring it – and listening with half an ear. But this year, I’m determined that nothing’s going to take precedence over spending quality time with my kids.

I will relax my standards.

Much of my exhaustion comes from trying to make everything perfect. The gifts. The house. The meals. Everything has to be just so and exactly right. It’s a personality trait deeply embedded in my DNA, and one that I need to abandon – or at least relax – during the holidays. Last year, I had a revelation of sorts, when we were picking out our Christmas tree, that will forever change the way I do things. Usually, we examine just about every tree in the lot. But that day, I didn’t have the energy, so when I spotted a tree right inside the front gate that looked reasonably decent, I stopped. The trunk was a bit crooked and there were a few branches missing here and there. But when my husband held it up for my inspection and asked me, “What do you think?” I surprised myself by saying, “It’s good enough.” And it was. In fact, it turned out to be the most beautiful tree we’ve ever had. So that became our mantra for the rest of the holidays. We coined it our “good enough” Christmas. And you know what? It was absolutely perfect.

I will do most of my shopping online.

This promise I’ve already kept. I challenged myself this year to find gifts online for everyone on my list – and apart from a few stocking stuffers that were too small to ship, I’ve managed to check them all off. So now, with 24 shopping days left until Christmas, I’m done. And I barely left the house. In fact, I did all of it on my bum! That means the energy I would have expended fighting the crowds at busy, noisy shopping malls can now be used for everything else. There are very few things you can’t buy online these days and most sites offer great deals on shipping over the holidays. By grouping the items I purchased together, I didn’t pay a penny for delivery to my door. So, why poop yourself out? Pour yourself a glass of wine. Turn on some Christmas music. And put your feet up. Use the energy-saving power of the internet to get your shopping done.

I will plan ahead.

Obviously, it makes sense to plan meals that can be made ahead and do your baking in advance. But the kind of planning I’m referring to here is more detailed than that. If Santa makes his list and checks it twice – go over yours a dozen times. And make more than one. Try to think of EVERYTHING you’re going to need (cards and wrapping paper, presents that can’t be purchased online, groceries and alcohol, clothing, cleaning supplies, etc.) before you even THINK of leaving the house. And then devise a strategy for getting them. Choose stores that offer the widest selection of merchandise. And group the items on your list together by store – and even by location, within each store. The objective is to minimize how many trips you have to make, the number of times you have to get in and out of the car while you’re out, and the amount of walking you have to do while you’re there. The more time you invest in carefully planning where you’re going to go and what you need to get, the more wear and tear you’ll save in the end.

I will accept help when it’s offered – and ask for it when it’s not.

This is a no-brainer, really. So, why do I so often turn down offers of assistance, when I could REALLY use the help? Is it pride? (Demonstrating that I can still do it?) Perfectionism? (Believing that only I can do it properly?) Or politeness? (Not wanting to inconvenience anyone?). Whatever it is, it needs to STOP! There are simply too many things to be done – and one person (even when perfectly healthy) can’t do it all. So listen up, family. This year, I’m delegating some jobs. Hubby: you’re in charge of getting the alcohol and groceries. Kids: you’ll be decorating the tree and running errands. And me? I’ll still be in the kitchen, preparing meals and cleaning up – but I’ll be occupying other hands to help. The party’s over – or maybe it’s just getting started. I guess it depends on which side of the duty roster you’re on!

I will look after my health.

Self-care usually goes out the window during the holidays. I tell myself that I haven’t got time to exercise or to rest. I calm my nerves by drinking too much alcohol, eat too many sugary treats, and sometimes skip my meds. I know these things aren’t good for me and that I feel better when I eat right and I exercise, but I fall off the wellness wagon every time. Sound familiar? So, I’ve decided to up the ante. If my health and wellbeing aren’t enough to motivate me to maintain my diet and exercise regimen over the holidays, I’m going to sweeten the pot and try a little bribery – by giving myself a monetary bonus every time I pass on a second piece of cheesecake or make it to yoga or the pool. And in the New Year, I’m going to use that money to treat myself to something that will help me to unwind from the holiday stress – a massage, perhaps….or maybe, a Caribbean vacation?

How are you planning to manage the stress of the holiday season this year?

Related links

 

You’re damn right, I’m looking good!

Nothing is more annoying to those of us living with the invisible effects of chronic illness than to be told how great we’re looking, when we’re feeling like crap.

And it happens A LOT – usually at the tail end of a conversation that goes something like this:

“How are you doing?”

“Not great. I’m really tired. I’m not sleeping well, and my arms and legs feel so heavy.”

“I know. I’m tired too.”

“Not this kind of tired. Some days, I can’t even move or think straight. It feels like my body’s made of lead.”

“But you look SO good!”

And there you have it. The phrase we all know – and loathe. It doesn’t matter if you’re talking about fatigue, or depression, or pain, or cognitive problems. The response is almost always the same. You bear your soul and admit you’re really struggling. And the message you receive in return is: “I find that hard to believe.”

Perhaps, it’s well-intentioned. I don’t think they’re deliberately trying to be cruel. But it’s an expression of doubt, wrapped in a back-handed compliment, that nevertheless rankles and hurts. You feel like they’re calling you a liar and that you haven’t been heard.

But what if you chose to react differently, by interpreting these words as praise, not condemnation? A round of applause for all the things you’ve managed to do, in spite of your MS – and to cope with your MS.

After all…

  • YOU made the effort to get out of bed.
  • YOU lifted your arms to shampoo your hair.
  • YOU got dressed.
  • YOU put one foot in front of the other.
  • YOU managed to climb those stairs.
  • YOU tried your best to be productive.
  • YOU kept up with your kids.
  • YOU followed your doctor’s prescriptions.
  • YOU put your own needs first.
  • YOU paid attention to your diet.
  • YOU made it to the gym.
  • YOU overcame your fear of needles.
  • YOU found ways to manage stress.
  • YOU asked for help when it was needed.
  • YOU gave yourself permission to rest.
  • YOU took it in stride when you missed that appointment.
  • YOU didn’t cancel your plans.
  • YOU smiled when you didn’t feel like it.
  • YOU tried again.

Only YOU know what it takes to get through every day with this beast of an illness on your back. And YOU’RE the one who has CHOSEN to keep going when every cell in your body cries, “STOP!”

So the next time someone says, “But you look SO good,” resist that flare of irritation. Take a moment to give yourself a pat on the back for managing your illness so well. You’ve earned their praise. Take credit for your success. You’ve demonstrated strength and courage, you’ve modeled perseverance in the face of adversity, and you’ve maintained a semblance of normalcy because you’ve REFUSED to give up or give in.

While you may not feel like other people recognize it, YOU know that you have. And it’s a GOOD thing that you’re looking so well!

 

Newly diagnosed with multiple sclerosis? You’ve Got This!

I’m an MS veteran, but a newcomer to the MS online community. I’ve only been active on Twitter, Facebook, Pinterest and other platforms for the past year. And I didn’t know what I was missing! I’ve discovered the internet is more than a source of factual information about MS. It’s a web of support I can access – at any time, from anywhere – and can always count on to cajole, inspire and uplift me.

If you’re new to this disease, I encourage you to tap into this resource and connect with other people living with MS. They understand exactly what you’re going through and have a lot of practical advice and wisdom to share. Many of them have done so through Healthline’s “You’ve Got This! video campaign – a wonderful repository of personal experience stories designed specifically for you. Here’s my contribution – along with a few tips, based on what I’ve learned since being diagnosed.

Don’t go overboard with your research

I’m a journalist by training, so doing research comes as naturally to me as breathing. The first thing I do whenever I’m tackling a new subject, or learning a new skill, or traveling to a new destination, is to learn EVERYTHING I can about it. So, when I was diagnosed with MS, I got on the internet as soon as I got home from the doctor’s office and started reading. That was a big mistake! The more I read, the more upset I became. MS comes with a long list of potential consequences, and learning about them all at once was too overwhelming. I soon realized that it was better to restrict my research to what I absolutely needed to know. I had to understand how the illness was causing damage, I needed to learn how to manage the symptoms I was experiencing, and I had to make a decision about how I was going to treat it. Going beyond that was just freaking me out. So be selective in what you read. Give yourself time to absorb the information in small doses. And consult only the most reputable sources.

Make choosing a treatment your number one priority

I was surprised by how much responsibility I was given for picking my course of treatment. I was expecting my neurologist to say, “This is what you have and this is what you’re going to take.” But after giving me a brief synopsis of the illness, he gave me a list of the available medications and the web address for the MS Society, and told me to research my treatment options. It seemed like too much responsibility at the time – although there were only four drugs to choose from – but it forced me to look closely at their individual side effects and safety ratings. Your neurologist may ask you to do the same, and it’s important to get right on it. While it’s difficult to weigh the pros and cons – especially now that oral therapies are available – it’s not a choice you can afford to put off. Neurological damage occurs very early in MS, and the disease can progress without any clinical signs. So don’t sit back and wait. Hit it early and hit it hard.

Don’t let a fear of needles scare you off

When I was diagnosed with MS, injectable medications were the only available treatments – and that came as quite a shock. I honestly didn’t think I’d be able to do it. The drug company sent me a video with my needle kit that showed people happily doing their injections, and I thought: That’s ridiculous! It will never be that way for me! And it was very difficult in the beginning. Even with an auto-inject device that hid the needle, it would often take me several minutes to summon up the courage to press the button to release the plunger. But now, after more than a decade of doing it, it actually has become quite routine. Honestly! I’m not saying that I enjoy doing it, or that I don’t find it inconvenient at times, but it’s not as bad as I imagined. In fact, I’ve grown so accustomed to it that I don’t think I’ll switch to one of the new oral therapies. So, in weighing the decision between needles and pills, don’t be put off by the injections. Choose your medication on the basis of its relative safety and effectiveness.

Commit to the treatment you’ve chosen

I’ve found the hardest thing about taking Copaxone – the drug I chose – isn’t injecting the medication. It’s sticking to the program. In the beginning, I expected that a disease-modifying therapy would make me feel better. But that’s not what these medications do. They’re not designed to alleviate the symptoms of MS, but to alter the course of the disease. Consequently, you don’t feel any benefit from taking them, and you start to question if they’re actually working. There have been many times over the last few years when I’ve been tempted to go off my medication completely to see how I’d feel without it. But what if it’s the reason I’m doing so well? It just seems like too much of a gamble for me. And so, for the time being, I’m staying committed – and I think that’s the key to any long-term strategy for managing this disease. Whether you opt for a drug therapy or choose to treat your MS naturally, you have to be disciplined and consistent. None of these methods will do anything for you, if you don’t follow the plan.

Adopt a healthy lifestyle 

Disease-modifying therapies aren’t for everyone. Some people believe in a more natural approach or don’t respond well to medication. But everyone living with this illness can benefit from making healthy lifestyle changes. If you smoke, stop. If you eat a lot of crap, make some better choices. And if you’re out of shape, get moving. All of these behaviors will strengthen your ability to cope with your MS and help you to achieve a better outcome. On the subjects of diet and exercise, I have found two books especially helpful: Overcoming Multiple Sclerosis by Dr. George Jelinek and The Wahls Protocol by Dr. Terry Wahls. Both of these physicians have successfully managed their own MS using natural methods – but they don’t discount the value of disease-modifying therapies. Like me, they believe that when it comes to MS, you have to do everything you can to slow it down or stop it in its tracks.

Expose yourself to sunlight and take Vitamin D

One lifestyle factor receiving a lot of attention is the role of vitamin D in MS. Studies have shown that higher blood levels of this vitamin may prevent the illness from developing, and there’s some evidence to suggest that taking vitamin D may reduce disease activity in those already diagnosed. I’ve increased the amount I’m taking to 4,000 IU daily, and the results have been remarkable. I’m experiencing less pain, my thinking is sharper and my sleep has dramatically improved. But here’s a note of caution: vitamin D can be toxic, if you take too much. At 4,000 IU, I’m at the upper limit of what the U.S. Food and Nutrition Board considers safe as a daily intake, though the Vitamin D Council pegs the tolerable level at 10,000 IU. I am trying to achieve a blood concentration of 25(OH)D at the higher end of the 40-80 nanogram/ml (or 100-200 nanomoles/litre) range considered optimal by the Vitamin D Council. And I will have my blood tested regularly to ensure that I haven’t exceeded what is safe.

Drink lots of water

One of the speakers at an MS patient education session I attended soon after my diagnosis recommended this, and I remember thinking at the time: “Yeah, right. As if that’s really going to help.” I just couldn’t see how that could possibly make any difference in managing the effects of this disease. But believe me, it does. I find that when I make a conscious effort to drink enough fluid every day, I feel less fatigued and my cognitive functioning improves. It may seem counter-intuitive to those of you who are experiencing bladder problems to drink more fluids when you’re already going to the bathroom all the time. But if you’re careful about when you consume your liquids (e.g., not immediately before you’re going out or heading to bed), it shouldn’t exacerbate your bladder symptoms too much. How much fluid should you be drinking? Traditionally, 6-8 glasses per day have been recommended, but some experts now say we should aim to consume half our body weight each day in ounces of water. I’ve never managed to reach either target, to be honest, but the more I drink, the better I feel.

Exercise as much as you can

I once told a healthy friend of mine that I was really tired, and she immediately asked me, “Are you getting enough exercise?” That ticked me off at the time, because I felt she was placing the blame for how I was feeling on me. But it probably also rubbed me the wrong way because I KNEW what she was saying was true. I WOULD feel better if I exercised more – I just couldn’t summon the energy to do it. It’s a vicious cycle for anyone living with MS fatigue – the more tired you feel, the less you move; and the less you move, the more tired you feel. But this is one lifestyle change where even the smallest incremental addition in activity can be beneficial – as I discovered recently when I finally made it to the pool. It has taken me months to build up the strength and endurance to swim a fraction of the distance I used to, but the energy payoff for making the effort has been huge. So, do what you can – as often as you can – and trust me, you’ll really feel a difference. The stronger and fitter you are, the better you’ll manage. Use it or lose it. It’s as simple as that.

Keep track of your MS and how you manage it

When you’re using so many different strategies to manage your MS, it’s sometimes hard to identify which ones are helping you the most. So, it’s a good idea to write down what you’ve tried, along with the results. This enables you to make adjustments to your diet or tweak your exercise plan. And it can help you to assess how you’re doing on your medication and report any adverse side effects. Having a detailed chronology of your disease progression can be indispensable too. Physicians and other specialists will ask you questions about your medical history. They will base their assessment of how you’re managing on your progress reports. And they will make decisions relating to your care based on the details you share. The more precise you can be in your answers, the more helpful you will be. So don’t rely on your MS-battered brain to remember everything. Create a folder, download an app or buy yourself a journal and keep all of the details relating to your illness in one place. Even if you never have to refer back to it, you’ll have the comfort of knowing that record is there.

Think before you disclose

Only you can decide who you’re going to share the news of your diagnosis with and when. If your problems are obvious, you may feel compelled to explain them right way. If they’re not, you can wait until your ready. Take the time to consider how disclosure might affect you – especially in the workplace. While it may be necessary to share some information to secure the accommodations you need, doing so could change the way you’re regarded by your colleagues and compromise your career advancement. And once it’s out of the bag, it’s impossible to take back. I lost an ongoing freelance assignment when I disclosed that I’d been hospitalized for depression – and afterwards, I realized I didn’t really need to be that forthright and specific. I could have explained my absence by simply saying I’d been having some problems with my health. So, on the job, I’d advise you to be cautious and only tell your colleagues what they need to know. Always act in your own self-interest, and carefully weigh the pros and cons.

I’m sure you can think of other things you’d like to know – or wish you had known when you were newly diagnosed. Any questions or tips you’d like to share?

Related links:

 

Introducing invisible multiple sclerosis

Welcome to my new website on the hidden effects of multiple sclerosis, including depression, cognitive impairment, bladder dysfunction and fatigue. As an MS veteran whose symptoms are largely unapparent, I’ve created this online environment to acknowledge and support other people who are living with this illness in a similarly invisible way.

Multiple sclerosis affects everyone differently, but it’s generally equated with physical disability. There is very little awareness of its more subtle effects – and yet, they can be every bit as crippling. It’s hard to live a normal life, when you’re confused, anxious, forgetful, depressed, in pain, always running to the bathroom, and perpetually fatigued. Getting other people to understand – or even recognize – this hidden impact is an even greater challenge.

If you’re nodding your head as you read this, you know exactly what I mean. And the content of this website is designed for you. While you’ll find information here of interest to anyone living with MS, the emphasis will always be on the invisible aspects of the disease. By sharing my personal story, and pointing you to resources that can help you to manage these hidden symptoms, I hope to support and give voice to your experience – and make other people more aware of what you’re going through.

To that end, I’ll be constantly trawling the web to find the latest and most helpful information on MS and organizing it for you by topic so that it’s easily accessible. This will include website content, online articles, blog posts, videos, podcasts, studies and any other links that I think you may find useful. I’ll also comment on these resources – and other aspects of living with MS – in my monthly blog posts.

Think of me as an MS “curator” – someone who has lived with the illness for more than a decade and has a pretty good handle on the issues that you’re facing and the information that you’re looking for. There’s a lot of it out there, but it’s time-consuming to find it and often difficult to judge its credibility. This site will help you to sift through and make sense of it.

To start, I’ve assembled resources on the symptoms that I’m most familiar with – depression, bladder dysfunction, cognitive impairment and fatigue – and I’ll be adding more content on other topics over time. You can help me with this by suggesting links that I might have missed or other subjects that you’d like me to cover. I’m hoping that building this repository will become a collaborative effort that we all can benefit from.

So, have a look around – and come back often to see how it’s grown. It’s a labor of love and a work in progress that I hope will help you all.

 

“Vision is the art of seeing things invisible.” – Jonathan Swift

“We cannot direct the wind, but we can adjust the sails.” – Bertha Calloway