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.

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