Daily living

One of the most dispiriting aspects of a chronic illness is that it traps you in your own world. Major events happen but these are filtered against the achievement of actually being able to get yourself to the bathroom. At the time of writing, we in the U.K.

Have you ever hit a brick wall trying to self-inject? I have. It was with Avonex, the first DMD that I used. To make a long story short, after a couple of years of poking myself in the thigh muscle, I just couldn’t do it anymore. That’s…

Catheterization was one of my biggest fears when first officially diagnosed with MS in 1994. As the years went by I thought I might be one of the few patients who do not experience malfunction in the urinary system. Then, in 2012, something changed. I went from having to…

(Photo by Andreea Antonovici) A few months ago, I wrote about a bicycle that mimics the symptoms of multiple sclerosis. Now, I’ve discovered that there’s an “MS House” that allows a healthy person to experience some of what life is like for someone who lives with MS.

A few weeks ago, I wrote about some of the invisible costs of living with MS. Writing that column really got my mind thinking about all the ways that my MS costs me money. In fact, I couldn’t stop thinking about it! In the days that followed, I…

Today is World MS Day, and people around the world are sharing tips for living with multiple sclerosis (MS) by using the hashtag #LifewithMS on social media. The MS International Federation started World MS Day in 2009. Events and campaigns take place throughout May to encourage the global MS community to…

My walk in the park usually consists of watching every one of my steps, while conserving my energy so I can finish the trek. In the midst of my walk, I remain acutely aware of how weak my legs are, and hope they don’t give out on me. For…

Those of us with multiple sclerosis know how difficult it is to describe our journey. Words frequently are inadequate for that task. But, at Derby College in England, horticulture students and their instructors have found a way. They’ve teamed up with local MS Society branches to create a 30-foot-by-40-foot garden…

Many people with MS experience symptoms related to digestion. According to the Pittsburgh Institute for MS Care and Research, “Nearly two-thirds of MS patients have at least one GI symptom that persists for 6 months or more.” Some of the most common problems are dysphagia (trouble swallowing), heartburn, nausea,…

With summer right around the corner, it’s time to start making plans. We all love spending time outdoors during the long hours of sunshine and warm temperatures, don’t we? Well, not everyone does. If you’re reading this, you’re probably living with multiple sclerosis. That…

What makes housing accessible? I thought I knew all of the features that would make a dwelling accessible. Turns out I didn’t. The Department of Housing and Urban Development report on housing stock in America has a table that covers an extensive range of…

It’s the time of year for travel here in the U.S. Graduations, weddings and vacations are on all of our calendars. Air travel, in particular, can be a real pain for someone with a handicap such as multiple sclerosis. Security, aircraft seats and legroom are all becoming increasingly…

If I was writing fiction about two disabled people going on a road trip, I’d be pleased to create a character like Nigel. He’s stroppy, Northern (from the perspective of the U.K. there isn’t a direct U.S. analogy – think deep south– but really cold and more booze!)…

(Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with this first of two parts on terms starting with the letter “D.”) When it comes to multiple sclerosis, mastering an understanding of the disease means you need to mind your Ps and…

MS is sneaky. It is expert at evading detection and diagnosis, and often brings a host of invisible symptoms that may come and go at random. MS also brings invisible costs — expenses beyond the obvious medications, supplements, assistive devices, and healthcare. I am not talking about externalities,…

Losing our independence due to multiple sclerosis is a profound loss. With that loss comes the grieving process and inevitable change. On Grief.com in “A Message from David Kessler,” he discusses the five stages of grief: denial, anger, bargaining, depression and acceptance. I have experienced all of these…

I now introduce myself as a disability rights activist. I began to pay attention to local politics and related activities last fall. Our city redevelopment plans are charging along, without any city staffer to pay attention to the needs of the disabled. As such, I’ve been making the…

Have you ever been on a New York City subway? I grew up in the Big Apple, and I used to love riding the subway as a kid. I’d travel all over the city without a problem. Not so today. Not so since MS changed my track.

A few years ago, after a fairly stable decade, my MS decided to shake things up. What began as occasional tripping over my own feet soon turned into chronic shin splints, and the inability to walk or drive far, all of which was caused by MS foot drop.

When I began writing about multiple sclerosis, I never imagined that, one day, I’d be writing a column about guns. But here I am, staring right into that barrel. The other day as I cruised around MS websites, I ran across a post from a woman who was…

Multiple sclerosis causes debilitating fatigue. The following photographs show, without censorship, what my fatigue leaves undone. The homes of everyone I know have living rooms without sweaters tossed over the back of chairs. Their floors are not an obstacle course. They do not have piles of mail, notes, drills,…

It was three years since I’d seen my best mate Nigel. The last time had been when we said goodbye at London City Airport after our three-day sozzled sojourn (OK, drunken trip) round the Scottish Isle of Islay. To the uninitiated, a pilgrimage for those who worship peat in their…

You might think that the Fair Housing Act required multifamily buildings to have elevators, but no, it doesn’t. A multifamily dwelling of four units that does not have an elevator is not required to have one. However, the ground floor units must be fully…

The ABLE Act improvement bills were reintroduced into Congress this week and referred to committee on April 4. The bills died in committee in 2016 before an active campaign could garner enough attention in that election year. I urge all readers in the U.S. to call your representatives and senators to encourage them to…

These might be the days of the gig economy, but I’ve been doing one every Tuesday for 27 years. My particular white van (for US readers the delivery drivers of such are a British stereotype of the new Amazon order — or lack of it) is a comedy vehicle…

In the summer of 2012 David Bowie’s song “Heroes” became the anthem of the London Olympics despite Bowie turning down an invitation from British director Danny Boyle to be part of the opening ceremony. Gracious as ever, Bowie agreed to a meeting. Boyle had a lot to thank him for. Bowie…

To scoot or not to scoot? Is is better to drag your legs around for as long as you can, or to give in and get yourself a set of electric wheels? That decision prompted the following vent on a multiple sclerosis Facebook group recently: “I’m just…

It appears my favorite way to fly — wearing leggings or yoga pants — isn’t sanctioned by United Airlines. Fortunately, I’m not one of their employees, and I am not related to one who might be able to share free travel passes with me. How sad. Normally that would be a…

Being disabled by MS does not have many advantages. One — free city street parking in California — is likely to end soon. In the rush to garner parking revenue, though, the lack of concurrent discussion about providing dedicated handicapped parking (DHP) is troubling. The widespread abuse…

For most of the 36 years since I was diagnosed with multiple sclerosis I’ve not been bothered by pain. Just lucky, I guess. Until last month. Suddenly, I’ve developed pain in both hips and I don’t know why. The pain is most intense when I first put my feet on…