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!

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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:

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

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.

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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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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!

 

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.