How MS causes anxiety and some ways to manage it

I’m delighted to share this guest post from Abigail Budd, a writer and blogger who also works part-time in the criminal justice system in the UK. She was diagnosed with relapsing-remitting MS in 2008 and is now secondary progressive, but tries to see the funny side wherever possible. Abi lives in Brighton with her family and plays an active role in the global MS community. You can find more of her writing on NewLifeOutlook. – Suzanne Robins

One of the ways multiple sclerosis (MS) has changed me over the years is how often I feel anxious and stressed about everyday situations.

I used to be so carefree and confident, to the point of arrogance at times. I thrived in new situations and relished the unknown.

MS has gradually eroded this self-belief though, and there are times when I feel anxiety creeping in and spoiling everything. Anxiety is linked to the fear I’ve written so much about over the years — it’s an omnipresent black cloud that follows me around.

What is anxiety?

The Oxford English Dictionary definition of anxiety is: “A feeling of worry, nervousness or unease about something with an uncertain outcome.”

That uncertainty is what makes me feel anxious all the time. Before I had MS, there was very little uncertainty surrounding a new situation. But now, new situations are fraught with terrifying possibilities.

What if I fall over? What if I can’t get up again? What if I the restroom isn’t nearby? What if I don’t make it to the restroom in time? What if there are stairs? What if the restroom is upstairs?

With all this to worry about, it’s amazing people with MS ever leave the house. I’ve spent hours on the phone before going to a new place, planning every last detail. It’s exhausting.

Physical symptoms of anxiety

Anxiety isn’t all in our heads. I’ve experienced physical symptoms of anxiety, such as a racing heart, sweaty palms and my legs turning to jelly. With my mobility being shaky at the best of times, I could do without jelly legs as well!

I end up feeling anxious about feeling anxious, as I know it’s going to make everything worse. And so a cycle of misery emerges and conspires to keep me from doing anything new!

These physical symptoms are a natural, “fight or flight” response to fear, left over from when humans used to hunt and be hunted. It was extremely useful to be able to identify fear quickly and respond when being chased by a woolly mammoth, but it’s not so useful when trying to negotiate stairs with MS.

Anxiety about the future

As well as fear and anxiety over new situations and places, there is also the terror of what the future might bring. With a potentially progressive condition like MS, where no two people experience the illness the same way, it’s no wonder our imaginations run away with us at times. I often get the horrors during early, sleepless hours, imagining worsening MS symptoms and disability, and decreasing quality of life. Luckily, my busy life takes over during waking hours and dominates my thoughts, or I’d be terrified all the time.

Is there anything we can do about all this anxiety? How can we improve it so it doesn’t take over and steal what’s left of our independence?

Be prepared – This sounds simple, but it helps me reduce how anxious I feel. For example, phone ahead and ask lots of questions about a place you’ve never been to, so you can be as prepared as possible. I always look venues up online too, and wonder how anyone with disabilities managed before the internet!

Breathing – Many people find deep-breathing exercises can help calm racing thoughts and relax their bodies to reduce the physical symptoms of anxiety.

Herbal remedies – If I have anything I need to do, such as giving a talk or a going to a job interview, I take herbal tablets to reduce anxiety. I find they help enormously with sleep the night before, which is also beneficial, and they take the edge off the feelings of anxiety, helping me to do what I need to do.

Cognitive Behavioural Therapy (CBT) – The aim of CBT is to help people think differently about the situation they’re in by introducing strategies such as positive self-talk to retrain their brains into thinking more positively. I know I’m guilty of talking myself out of trying new things or going to new places, so I can see where CBT could benefit me. Other counselling may also help, as talking about our anxiety can help to calm it.

Meditation – Like breathing, meditation can be beneficial in reducing symptoms of anxiety.

Medication – In severe cases, it may be necessary to talk to your health care professionals about medication to help relieve symptoms.

Exercise – Yoga, Pilates and other exercise may reduce symptoms of MS and help to dampen the anxiety produced by those symptoms. It also releases endorphins into our bodies, which helps to relieve stress and anxiety.

Trying some of the above strategies and techniques may alleviate your anxiety and will ultimately help you feel more in control. It’s impossible to reduce anxiety altogether due to that ingrained fight or flight response, but it is possible to minimize its impact.

Many thanks to NewLifeOutlook for providing this post!

ms-community

My interview with Meagan Freeman: MS author, blogger and mom

I hope you’ll enjoy this interview with Meagan Freeman, a California writer and mother of six (!), who is living with MS. Her blog – Multiple Sclerosis, Motherhood and Other Traumatic Experiences – is one of my favorites, and her book The Hero of the Story is an inspiring read. Meagan writes with warmth and wisdom, informed by her experience as a mother with MS and a nurse practitioner. And I’m thrilled to share her thoughts on parenting and MS with you in this Mother’s Day Q & A.

I’m sure most people reading this are wondering: How on earth does she manage with six kids and a chronic illness like MS? So tell us, how DO you do it? 

As a mother of six, I have very little time for anything. Simply using the bathroom takes planning and precise timing, so I clearly did not have time for the diagnosis of multiple sclerosis. On August 24, 2009, my life changed dramatically when I heard those words. I was a 34-year-old emergency department registered nurse, a mother of five/stepmother of one, and a full-time student at the time of diagnosis. My husband is an emergency department physician, so he has an insane work schedule, as well. Who has time for this?? I have kids at home who need laundry done, dinner needs to be made…. and all I could think for so long was “Why me?” I quickly snapped out of that mindset. I am fortunate to have a tremendous support system, because I certainly could not do this alone. I was able to complete my Master’s program after diagnosis and become a nurse practitioner, and I worked for two years in that capacity. Between six kids and full-time work, however…my illness finally caught up to me last year. I had to call it quits, and now I am home full time with the kids. Working was not possible anymore due to illness progression, so that has been my largest adjustment since diagnosis, and I truly grieved for the loss of my career. But I must say that I also breathed a sigh of relief at having a bit more time to rest – at least while everyone is at school! Having a support system is essential for any parent with MS. It truly takes a village.

What have you told your children about your illness? How did you go about it? And why did you decide to share that information with them?

Initially, I told them very little, but as time has gone on, I have shared much more. I believe that many people are afraid to share information with children regarding illness, but this really isn’t the best approach. They aren’t as fragile as we might think, and often, the lack of information is more fear-provoking than having some concrete, factual information to work with. If we share age-appropriate facts with them about our illness, they will have a much better understanding of the disease, rather than creating a terrifying image in their minds. I had to create a different “speech” for each child due to the huge variety of ages in my house! I decided that I could not hide my illness, so I needed to share. I told them exactly what causes my illness, and that I was not going to die, but that I would have numbness, weakness, fatigue, and sometimes I would just not feel well. The older children got a much more detailed explanation.

How did they react? And how have they adjusted since?

At the time of my diagnosis, my kids ranged in age from one to eleven. They were so young that they really had no understanding of MS. I did my best to explain it, but I did so in a very age-appropriate manner. I tried to protect them from it as best I could. I did not feel that sharing this information with them at that time would benefit them, and may serve only to cause fear unnecessarily. I felt that I would share things as needed, as they occurred. In the seven years since the diagnosis, the kids have become much more aware as the disease has made itself known. It becomes much more difficult to hide! They have become so supportive, so kind and loving. If there is something positive to come from this, it is that my children have learned to show kindness and empathy.

Do you worry about your children getting MS? What fuels that fear? And how do you keep it in check? 

I understand that the statistical risk of my children getting MS is only slightly greater than that of the general population, but it still concerns me. Every parent worries about the health of their children, and anyone with a disabling condition with a genetic connection certainly worries about this risk. The risk is still low, but it seems to be slightly elevated, which is concerning. My maternal grandmother also had MS, and this clearly is something that adds to my concern. My grandmother had seven children, however; and none were diagnosed. This is another example of a case of learning to let go of unnecessary fears, uncontrollable situations and anxieties. I have learned to evaluate every situation: Can I control this? Is there something I can do to change this? If the answer is no, I let it go. Otherwise, the worrying does no good whatsoever, and actually harms me physically and psychologically. Easier said than done at times, though!

If you could offer one piece of advice to other parents with MS, what would it be?

If I had to offer one piece of advice it would be to learn to let go a bit, to stress a bit less, and trust a bit more. This is a very difficult task for people like myself: the planners, the organizers, the managers, the controllers, the deciders. The challenge is to bend and flow with the new circumstances of our lives. This is definitely not something that comes quickly or easily. But with time, focus, and patience maybe we can bend a little more instead of breaking. My mantra has become: “It could always be worse.” If we truly stop to think about it…it really could be.

In your book, you talk about the importance of leaving a legacy and writing a life story you can feel proud of. What do you hope your children (and future generations) will remember about you?

It is absolutely essential to me that my children remember these happy moments. The laughter, the smiles, the joy and the love. These are the moments that need to be remembered. These moments are the reason we are alive. I spent many of my younger years in a very career driven state, focused on education and job success. I have no regrets about that, but I have become much more aware of the simple things in life due to MS. I have started to search more for happiness than success;  fun more than money. I hope I am remembered as someone who faced things with some degree of courage and did not quit. I hope I am seen as someone who faced challenges head-on without fear, and refused to give in and give up. Most of all, I hope my husband and children felt loved beyond words, because that’s how much I love them. They are my world, and they are the reason I go on when I feel that I can’t possibly take another step.

You can follow Meagan on her blog at www.motherhoodandmultiplesclerosis.com or on Twitter @MotherhoodandMS.

The Hero of the Story

My favorite Freeman posts:

My intro to bowel dysfunction

Ah, New Zealand. What a spectacular place! Jagged mountain peaks. Crystal clear turquoise waters. Endless sandy beaches. Lush temperate rainforests. And thundering waterfalls.

I’ve just had the pleasure of spending a month there, and I was blown away.

Its landscapes are vast and unspoiled. And I’ve never been anywhere so clean. It markets itself as 100% pure – and I have to agree, it’s pristine!

Or at least, it was. Until I arrived.

Traveling with MS is never easy. No matter how well you plan it, it’s tiring. And I knew this trip would be especially taxing, with two long back-to-back flights and an ambitious itinerary. After a couple of weeks, it didn’t surprise me when my symptoms began to flare.

But this trip introduced me to a new travel partner – a consequence of MS that I hadn’t previously experienced and that I didn’t expect: bowel dysfunction.

As someone with bladder issues, I spend a lot of time in the bathroom. And one of the great things about New Zealand is that there are free public washrooms in almost every community, clearly marked with little blue signs. Once I realized this, it calmed me down. I didn’t stress as much about emptying my bladder, because I knew I could go at will.

“Isn’t this FANTASTIC?!!!!!” I exclaimed to my husband, over and over again. He thought it was really funny that I was raving more about the washrooms than I was about the sights.

Then I was hit by the sudden urge to poop. And we weren’t laughing anymore.

I clenched my butt cheeks together, but I wasn’t too worried, as I knew there’d be a washroom in the very next town.

Except, this time, there wasn’t. And that’s when the shit hit the fan.

“OMG!!! I’ve REALLY got to go! We’ve GOT to find a place to stop!”

I frantically searched the roadside for a concealed spot to do my business, and finally spied some bushes in a scenic reserve. I was hoping for more cover, but that would do!

When we turned off the road, we noticed there was an outhouse in the parking lot about 150 metres away, and my husband logically steered us towards it. But I knew I wasn’t going to make it.

“STOP the car! STOP the car!” I hollered, throwing the car door open and running for the bushes, where I frantically dropped my drawers and squatted. Ah, sweet relief! It was like that food-poisoning scene in the movie, The Bridesmaids, where Lillian resigns herself to pooping in the street – except I wasn’t surrounded by lace and tulle.

It was then that I realized that I didn’t have anything to wipe myself with – nor did we have any kleenex or toilet paper in the car. And the bushes around me didn’t have any leaves.

So, I did the only thing I could do. Standing on a patch of prickly ground cover, I hopped from one foot to the other, as I took off my jeans and my underwear. Then I used my (thankfully large) lady briefs to clean myself up. What a mess!

And here’s the part that I’m almost too embarrassed to tell you about. My panties were now covered in poop and I couldn’t put them back in the car. Instead, to my everlasting shame, I tucked them – as neatly as I could – beneath the nearest bush.

And I’ve felt guilty about it ever since. Pity the poor hiker that comes across them. With a half-life akin to uranium, they will likely be there for years!

It was such a humiliating experience, and the problem plagued me for the rest of the trip (though I never had another miss). It has calmed down since, but it’s given me tremendous empathy for those of you who deal with bowel dysfunction on an ongoing basis. The memory of it haunts me still.

My husband teased me afterwards that they probably had surveillance cameras in the park and the authorities would be coming after me. And I was momentarily shaken when they pulled me out of the line as I was boarding the plane to come home. (Turns out, they just wanted to make a seat change. Phew!)

I got away with it apparently, but that doesn’t make me feel very good.

And so, my apologies to the people of New Zealand. You have a STAGGERINGLY beautiful country – and I’m sorry that I left it a little less pure.

Related links:

There’s no such thing as benign MS

The MS specialist I recently consulted for a second opinion was terrific. She was very thorough, a great listener, and she genuinely seemed to care.

I loved everything about her – except one thing: her liberal use of the term “benign MS.”

She’s not the first to characterize my illness in this way. My own neurologist has done the same. And on the surface, it would seem to be an apt description. Apart from a drop foot, I have no mobility issues and I’m not visibly disabled in any way.

Anyone with a score of 3.0 or less on the Expanded Disability Status Scale (EDSS) at least 10 years after the onset of disease has traditionally been labelled “benign.” And technically, I fall within this category. After more than 20 years of living with this illness, I’m a 2.5 on the EDSS – where 0 means no disability and 10 means death. There’s no question that I’m doing well.

But at the same time, I’ve been dealing with a range of invisible symptoms that have crippled me in other ways:

Depression and anxiety

In my early thirties, I began to have problems with my sleep. I couldn’t fall asleep or stay asleep, even when I was exhausted, and I was waking up countless times in the night with an urgent need to pee. This chronic sleep disturbance wrecked havoc with my ability to work as a freelance writer. The less I slept, the more anxious I became about my ability to perform; and the more anxious I became, the less I was able to sleep. Round and round I went in a vicious downward spiral that eventually culminated in my hospitalization for a panic disorder and depression. And when word got out that I was being treated for a mental illness, I lost clients and it took me years to re-establish myself professionally.

Bladder problems

Around the clock, my bladder is on overdrive. During the day, I’m always looking for a washroom. And at night, the urge to pee disrupts my sleep and I’m up and down like a toilet seat. For years, I’ve been taking a medication to calm my bladder, and that has helped considerably. But my dysfunctional bladder still interferes with my daily activities. There are things I don’t do and places I don’t go when I know I won’t have access to a washroom. And it’s getting worse. Not only do I have to go more frequently, but I’m having more trouble emptying my bladder when I do. I may have to start self-catheterizing soon – and the prospect of that is daunting.

Cognitive impairment

I’ve always considered my brain to be my greatest asset, but MS has been chipping away at it bit by bit. My thinking has slowed, I have problems with my short-term memory, and I find it hard to concentrate. I have to focus on one thing at a time – and even then, I’m easily distracted. I can’t read, think or carry on a conversation if there’s any background noise, and I often struggle to pull my thoughts together even when it’s quiet. It takes me longer to learn new things and to process information – which makes it tough to work as a freelance writer. I rely on my brain to do what I do, and it’s failing me. As a consequence, I’ve lost confidence in my abilities and I only write for my own satisfaction these days. Trying to meet other people’s deadlines – with a brain that is working at half capacity – just provokes too much anxiety.

Fatigue

Fatigue also makes working difficult. Some days, I feel like my body has been pumped full of lead. Every part of me feels heavy. Every movement is an effort. Even picking up the phone to call a friend or lifting my arms to shampoo my hair can be a challenge. People who haven’t experienced MS fatigue equate it with normal tiredness. But it’s not the same thing. Not even close. It’s a feeling of utter depletion that can hit you out of the blue – even in the morning after a good night’s sleep. In the beginning, my fatigue would come and go, and I’d have long periods of time when I’d feel absolutely fine. But now it’s a constant presence – a weight that I carry with me everywhere. There is always a limit to what I can do, and a penalty when I exceed it.

Vertigo

Until recently, I’d never experienced vertigo and I considered it a less significant MS symptom. But after experiencing two bouts of it last summer, I have to say that no other consequence of my MS has been more debilitating. When you can’t even roll over in bed or stand up without the room spinning, or feeling sick to your stomach, it’s impossible to do anything. I couldn’t work or do any household chores, I couldn’t drive or go anywhere on my own. And I couldn’t exercise or enjoy my favorite pastimes. Everything was on hold, until the swirling feeling was gone. I have never had a more disorienting, disabling, and frightening experience – and I hope I never have it again.

The term benign MS implies something that is harmless or without effect. A disease course that is mild and without significant consequence. But much of the impact of MS is unseen. To attach this label to those of us whose challenges are invisible negates our experience. And minimizes everything.

It’s a discouraging term that neurologists should scratch from their vocabulary. I don’t appreciate my MS being dismissed in this way.

Tell me I’m lucky. Describe it as mild. But please don’t call it benign.

Some things to consider if you’ve been told you have “benign” MS:

  • If your MS is relatively mild, be thankful. But don’t be complacent. There’s no guarantee that it will remain that way.
  • Your condition today does not predict how you will do tomorrow. You can progress in disability or transition to secondary-progressive MS, just like anybody else.
  • If you’re thinking about postponing treatment until your illness worsens, bear in mind that irreversible nerve damage can occur very early in MS – sometimes before the first symptoms appear. And disease activity can increase and progress without any clinical signs.
  • And if your physicians tell you you’re doing well, when you’re feeling anything but fine, encourage them to do a more thorough assessment of all of your symptoms – not just those evaluated by the EDSS. Other instruments are available to measure less obvious problems like depression, fatigue and cognitive impairment, and their use will ensure that the full impact of your illness is addressed.

Related links:

Was I right to get a second opinion?

Let me begin by saying that I’ve always had a great relationship with my neurologist. He’s an older man, nearing retirement, with a gentle manner and a delightful sense of humor. He’s eccentric and a bit disorganized, but I like him. And I think he likes me.

I’ve been seeing him for about 14 years now and I’ve been generally pleased with his care. But there have been times when I’ve questioned some of what he’s said. As an MS author and blogger, I read A LOT of information about MS, and – while I’m not a doctor – I think I’m fairly well versed. And some of his views haven’t jibed with the latest thinking on topics of concern to me, such as sleeping problems, cognitive testing, MRI monitoring and vitamin D.

So, when the subject of possibly stopping my Copaxone treatment came up, and a subsequent MRI raised some questions about my original diagnosis, I felt the need to get a second opinion. DO I really have MS? And, if so, AM I transitioning to a more progressive phase of the disease? And DOES it make sense to stop taking my medication – as he is recommending – when I’ve been doing so well?

I was nervous to broach the subject of a consultation with him. I wasn’t sure how he would react. No one likes to have their work questioned, even if it’s part of the job. I wrote out and practiced an entire spiel about why I wanted a second pair of eyes to look at my chart. And he took it in stride and calmly replied, “I can arrange that for you.” Wow, that was easy!

It became more difficult later when I chose to follow that conversation up with another appointment to clarify some of the findings in my MRI report, prior to going for my second opinion.

“This report has made me question my diagnosis,” I began.

“Why is that?” he shot back.

“You said it was less suggestive of MS than my first MRI. And when I asked you if you would have diagnosed me on the basis of this second report, you said you might have done a lumbar puncture to confirm it.”

“You’re twisting my words and taking them out of context.”

Oh, boy! This was going downhill fast.

By the end of it, I was in tears, asking for an evoked potentials test and a lumbar puncture. And he was so frustrated with me that he said, “I’ll do any test you want.” And when I asked about my medication, he said: “Stay on it or go off it. It’s your choice,” in a tone that implied, I really don’t care.

Thinking about the meeting afterwards, I realized I had backed him into a defensive corner, without intending to. First, I’d asked for the second opinion. Then I’d challenged his diagnosis. Oh, and for good measure, I’d brought my husband along – a man he had never once met in the 14 years that he had been treating me. Not much wonder he came out swinging! He was probably worried about a lawsuit.

The neurologist who reviewed my case was wonderful – a great listener and very thorough. She started from ground zero: took a detailed medical history, performed a neurological exam and ordered some blood work.

For her, the MRI was less conclusive for MS. (“The lesions look like MS, but there aren’t that many of them.” (Only 10!) “And their location is not particularly characteristic of MS.”) But the evoked potentials test strongly supported my original diagnosis, showing damage to the optical pathways behind both eyes (though I’ve never experienced any problems with my vision). A positive antinuclear antibody (ANA) result in my blood work made her contemplate lupus (and she didn’t rule that out as a coexisting condition) – but the level was low, she said, and the pattern more suggestive of MS. I hadn’t had my lumbar puncture yet, but based on everything she’d seen, she was convinced that I have MS.

On the medication front, she was more cautious than my own neurologist. She generally agreed that I was entering a more progressive phase and likely nearing the point where disease-modifying therapies would no longer be useful. But she was concerned about two episodes of vertigo that I’d had in the summer. She wondered if they weren’t signs that my MS was still relapsing. Apparently, she had another patient in her 50s, who much like me had been relatively stable, but immediately began relapsing when treatment was stopped. “Better to be safe, than sorry,” she said. “I’d stay on Copaxone for a couple more years, then reassess before discontinuing.”

This is the course of action I’ve chosen to take – though I wonder why I’m so willing to follow the recommendations of a practitioner I’ve just met, over the advice of a physician who has cared for me since the beginning. Through her warmth and compassion, and her diligent digging, she earned my trust very quickly. (If only she were accepting new patients!) I also wonder what effect this whole process is going to have on my relationship with my current neurologist. Will we be able to get back to where we were or is our relationship irreparably damaged?

Only time will tell. But there’s one thing I know for certain. I don’t regret that I did it. After the questions that were raised by my recent MRI, having my case reviewed by a second neurologist has given me tremendous peace of mind and greater confidence that I’m making the right treatment decision.

If it walks and talks like a duck, is it a duck?

I should be dancing on the ceiling. I’ve just received a stellar MRI report.

Though the number of lesions in my cerebrum has increased from 6-7 to 9-10 in the 14 years since my first (and only) scan, two key lesions in my corpus callosum and in my cerebellum have disappeared, according to the report. And I have no lesions in my brain stem or on my spine.

Nor are there many signs of brain atrophy. My ventricles are not enlarged and there are no black holes.

It was, without question, a terrific report. SO good, in fact, that my neurologist remarked, “It’s less suggestive of MS than your first MRI.”

Hold on. Say WHAT???

In my head, I’m thinking: ARE YOU SUGGESTING YOUR INITIAL DIAGNOSIS ISN’T AS SOLID AS YOU THOUGHT??????!!!!

“Would you have diagnosed me with MS based on the findings in this new report?” I asked.

“I might have done a lumbar puncture to confirm it,” he said.

My diagnosis had been based on my medical history, a clinical exam, some blood tests, and an MRI. No additional testing was done. Now, I wondered: had he been thorough enough?

“Let’s have a look at the images,” he said. He scrolled through the pictures quickly, clearly hunting for something. And then he found it, freezing on an image, with an “Ah, there it is!” A lesion in my corpus callosum, apparently, that he believed the radiologist had missed. I tried my best to see it, but I couldn’t make it out.

In his mind, this discovery confirmed his diagnosis. In mine, it just raised doubts.

Was the report wrong or more accurate than his assessment? Was he really seeing something or just covering himself? Do I actually have MS? Or is it something else?

What questions to be asking yourself after being under someone’s care for 14 years and sticking yourself with needles every day! It was certainly not the conversation I expected to be having when I walked into his office that day.

My neurologist is old-school and doesn’t believe in doing regular MRIs, unless “there’s significant change.” And I’d been relatively stable over the years. But some of my symptoms had been gradually worsening, and given my age (55) and duration of disease (more than 20 years from the onset of symptoms), he thought I might be transitioning to secondary-progressive MS. That would mean stopping my Copaxone treatment, as none of the disease-modifying therapies currently on the market are effective for non-relapsing, secondary-progressive MS. This MRI was supposed to provide us with information to assist us in making that decision.

Not confuse me even more!

Needless to say, I’ve asked for a second opinion from an MS specialist – which had always been my intention if he recommended stopping treatment. And he did. (“You’re not actively relapsing, the disease is in a progressive course, and there is no benefit to being on Copaxone at this point.”) But now, I have an even more pressing need for another pair of eyes to look over my case. And I’ll be pushing all of my concerns about progression and treatment aside to pose the one burning question that I NEVER imagined I’d be asking at this stage of my illness:

DO YOU THINK I HAVE MS?

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.

Related link

STOP this ride! I want to get off!

Lately, my life has been revolving.

“Like a circle in a spiral, like a wheel within a wheel
Never ending or beginning on an ever spinning reel”

The world swirls around me every time I move my head or change position – from sitting to standing or lying down in bed. I roll over and the room spins. Get up and the room spins. Bend down and the room spins. Turn my head and the room spins.

“Like a snowball down a mountain, or a carnival balloon
Like a carousel that’s turning running rings around the moon”

I grab the furniture to steady me. Run my hands along the walls. Bang my way through doorways. Grip the handrail on the stairs.

My movements feel strangely uncoordinated. My stomach is upset. I don’t know when or where it will hit me – or even IF it will come again. A cross between an amusement ride and Russian roulette.

I can’t drive. Or go anywhere on my own. I’m not able to do the groceries, the laundry or any other household chores. I can’t play the piano, take pictures with my camera, go for walks with my husband or swim. And even reading is a challenge, when words are dancing across the page.

“Like a clock whose hands are sweeping past the minutes of its face
And the world is like an apple whirling silently in space”

I’ve had dizzy spells before, and they’ve stopped me momentarily. But I’ve never experienced this kind of chronic vertigo before. Nor did I appreciate how debilitating it can be. It not only limits every aspect of your daily life and makes you feel sick. It shakes your confidence in everything.

When you can no longer trust the ground beneath you, or believe that your surroundings are firmly anchored in place, you feel tentative, anxious and unsure. It’s like you’re walking on eggshells all the time, expecting something to break. Falling becomes a very real concern, not an intangible threat. This is the first time since being diagnosed with MS that I have felt unsafe. Vulnerable to injury. On high alert.

And the fear it breeds is more pervasive than that. As the spins begin to mercifully subside, I wonder: Will they come back? And if so, when? Is this seasick feeling that I’m left with my new normal? Will I ever feel solid again? And is this new symptom a sign that my MS is progressing? Am I transitioning to secondary-progressive MS?

These thoughts go round and round and round in my head on a never-ending loop.

“Like the circles that you find in the windmills of your mind.”

Some things to know about vertigo:

  • Many people with MS feel dizzy, light-headed or off-balance. But vertigo is an especially disconcerting form of dizziness that involves a sensation of movement in relation to one’s surroundings. It’s a whirling or spinning feeling.
  • It affects about 20 percent of people with MS.
  • It can be caused by damage to the vestibular system, which coordinates visual and spatial information to control our sense of balance. Lesions in the brain stem and cerebellum are particularly problematic.
  • It’s important to rule out causes other than MS before treatment, as vertigo can also result from infections, debris or inflammation in the inner ear, Meniere’s disease, strokes or tumors, head and neck injuries, migraines and medication side-effects.
  • Vertigo is sometimes accompanied by other symptoms, including visual disturbances, hearing loss or ringing in the ears, walking and standing difficulties, nausea and vomiting.
  • There are some drugs for treating vertigo. These include over-the-counter motion sickness medications, such as dimenhydrinate (Gravol, Dramamine); prescription drugs, such as ondansetron (Zofran) and meclizine (Bonine, Antivert); and corticosteroids.
  • Vestibular rehabilitation with a trained physical therapist may be helpful if the spinning is provoked by changes in body position.
  • Safety is a real concern with vertigo. The risk of injury is high. Don’t drive. Be extra careful on the stairs. Use a mobility aid, if necessary. Take your time moving around and changing positions. Turn on lights when it’s dark. Remove tripping hazards. And above all, SIT DOWN until the spinning sensation passes.

Related posts:

(With credit to Alan and Marilyn Bergman for the lyrics to “The Windmills of Your Mind.”)

Website update: New resources on employment and MS

Do you find it challenging to work with MS? Are you concerned about disclosure?

Here are some helpful resources: www.invisiblems.com/employment

Caregiving isn’t a burden – and neither am I

Thirty years ago, I stood next to the young man I met in college and promised to love him no matter what.

In sickness and in health. Until death do us part.

It was an easy vow to make at the time. We were young and naive – and believed we were invincible.

Life has taught us otherwise.

When MS came knocking on our door, it was shocking. It disrupted our relationship and the dynamic in our home – like an unwelcome guest, with a lot of baggage. It affected my ability to work and to contribute to the family purse, creating a lopsided partnership.

He was now the provider. And I was the dependent. In my mind, a financial burden.

He never once complained about bearing that load – or made me feel bad for not contributing. I just didn’t feel like I was pulling my weight. And I worried about the future.

Would I become even more dependent on him – for personal care, as well as money?

But recent events have tempered that fear and changed my perspective. In the blink of an eye, my husband was suddenly unwell, and I was thrust into the role of caregiver. After three bowel surgeries – and nearly losing his life – he was dependent on me, for just about everything. Meals. Personal care. Household chores. Transportation to appointments.

The shoe was on the other foot, and he didn’t like it much.

“I feel like such a burden,” he said, one day. And that stopped me in my tracks. How could he possibly feel that way? I was just giving back.

It wasn’t his fault that he was sick, after all. And nor, I thought, was my own illness mine.

A moment of sudden clarity, in a difficult time.

So what did I learn from this experience?

That life can turn on a dime. It’s messy and unpredictable – for EVERYONE, not just for those of us who live with chronic illness. There are no guarantees. And we will ALL be vulnerable – and in need of help – for some reason, at some point in our lives.

And that doesn’t make us a burden. Just someone in need of more love and attention – who would happily return the favor, when the tables are turned.

In the context of a marriage, it’s the fulfillment of a promise. And even though we may not have understood the full import of our words when we said them, we meant what we said.

I will always be there for him. And he will always be there for me.

Until death do us part.