Spoons are great in theory, but I prefer a knife

Most of us living with the crushing fatigue that accompanies chronic illness are familiar with Christine Miserandino’s Spoon Theory. (If not, read about it here: http://bit.ly/1DqtDfj.) She uses spoons to represent our limited supply of energy, and describes the choices that we make every day to use this precious resource wisely.

This powerful metaphor – which has inspired a global network of “Spoonies” – is an effective way of explaining the constraints of chronic illness to those who haven’t experienced them. And it’s an important reminder – to those of us who do – to carefully conserve our energy.

I grapple with fatigue on a daily basis, and am thus a card-carrying member of the Spoonie movement. It’s a tremendous source of consolation and support. But when it comes to actually MANAGING my illness, I prefer to use a different piece of cutlery: the KNIFE. While I’m always mindful of my “spoons,” I’m constantly looking for opportunities to chop, slice, cut, pare, shave, and dice my life.

Here are 10 ways to wield your metaphorical knife:

Pare down your to-do list

If you’re like me, you start your day with a list of things you want to get accomplished. And you get frustrated when you don’t manage to check them all off. Even when you’re healthy, it can be a challenge to get everything done. Add a chronic illness to the mix, and it’s practically impossible. So whittle your list to the bone. Take a good hard look at what you’ve got on your plate, and scrape off the tasks that aren’t important. Then tackle the rest one by one. Do the most demanding things early in the day, when you’re feeling fresh. And accept that some of them just won’t get done.

Chop it into bite-size pieces

Any task – no matter how complex – can be broken down into smaller chunks. House needs cleaning? Do it one room, or one floor, or one drawer at a time. Got a meal to prepare? Cut the ingredients up as time permits through the day, then throw it all together at the end. Got a lot of shopping to do? Don’t try to do it all at once. Make several shorter trips. It’s all about breaking big jobs down into a series of smaller steps. Large mouthfuls are hard to swallow. Smaller bites are easier to digest.

Shave steps from your daily routine

Energy conservation is crucial. It’s important to find less taxing ways to do things. Sometimes, this means changing HOW you’ve got things physically organized at home or work to make tasks more energy-efficient (reorganizing your kitchen or your office, for example). At other times, it may involve changing the WAY you accomplish certain tasks (e.g., by altering your schedule or making use of energy-saving tools). Nancy Lowenstein has written a great book to guide you through this process: Fighting Fatigue in Multiple Sclerosis: Practical Ways to Create New Habits and Increase Your Energy. Through a series of exercises, she helps you to examine your daily routines to identify activities and environmental factors that may be sapping you of energy.

Scratch the need for perfection

I’ll be the first to admit I’m not perfect – though I’ve spent a good portion of my life trying to be. And constantly striving to attain (and maintain) that standard of excellence is unrealistic – especially when living with a chronic disease. You’ve got to let it go. Your home doesn’t need to be spotless. Not everything has to be made from scratch. You can’t afford to be perfect. So relax your standards and cut corners wherever you can.

Trim the fat from your social calendar

Repeat after me: it’s okay to say no. That’s right, it’s okay to say no. You may WANT to say yes. You may feel OBLIGED to say yes. But you don’t HAVE to say yes. Embrace the power of no. And here’s an even more important kicker: do so, without feeling guilty or apologizing. You don’t have to explain your reasons or feel bad that you’re not helping out. You just can’t. Remember, you only have so many spoons. Use them for the people and events that really matter.

Sever relationships that are no longer serving you well

Let’s face it: some people build you up and some tear you down. Don’t waste energy on those who blame, judge or criticize. Focus all of your attention on the people who love and support you the most. You know who they are. Chronic illness has a way of separating those who are truly in your corner from those who are not. Cling to those who uplift you; cut your ties with those who don’t.

Take a stab at changing your diet and exercise habits

Change is hard. And trying to do it all at once is even harder. When it takes everything you have to get a meal on the table, implementing – and sticking – to the stringent requirements of a new dietary regimen may be biting off more than you can chew. Instead, it may seem less overwhelming – and you may have more success – by making a few small changes to your diet to benefit your health (eliminating a specific food group, for example, or eating more fruits and vegetables). The same things goes for exercise. Instead of investing in an expensive gym membership that you may not have the energy to use, look for opportunities to build a little more physical activity into your day. Every bit of movement counts. So “tweak your week,” as Dr. Mike Evans says:

Carve out some personal time

Pacing is important when living with chronic illness. To recharge your batteries, you have to balance activity with rest. But it’s equally vital to make time for things in your life that rejuvenate your spirit. Activities that bring you joy. For me, that’s photography, reading and playing the piano. For you, it might be something different. Gardening, knitting or ballroom dancing. It doesn’t matter WHAT it is, as long as it matters to YOU. Get absorbed in what you love and forget about chronic illness for a while.

Strip your environment of clutter and background noise

MS can wear you down mentally, as well as physically. I find that my thinking slows as the day progresses, in tandem with my energy level. I have more trouble absorbing information, making decisions, and keeping track of my appointments and belongings. But most notably, I can’t concentrate and I’m easily distracted. Removing clutter from my home and office – and reducing background noise in my environment – has helped me to stay more focused. There are fewer things vying for my attention and overloading my senses. I feel calmer, more in control, less overwhelmed. But there’s a caveat that comes with this: don’t try to do it all at once. There’s little point in exhausting yourself to ease your cognitive load.

Cut yourself some slack

You have a neurological disorder. That’s not an excuse. It’s a fact. And because your nerves are damaged, your body and mind have to work MUCH harder to get anything done. You’re not well. So don’t beat yourself up! Pushing yourself beyond your limits will only set you back. Take advantage of the times when you’re feeling energetic and give yourself permission to back off when you’re not. Listen to your body and ignore that little voice in your head that tells you, “You’re not doing enough.” Because you ARE.

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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.

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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?

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