Daily living

A pet is the most loyal companion a person can have.  I’m currently sitting in my dad’s home office and typing away on my laptop. It’s nice to have a change of scenery. I brought my tiny dog, Lucy, with me as usual.

My travails with MS invariably deal with what it does to me. This week, dear reader, it’s what I did to my jolly old self! I’ve got a daily light exercise routine designed for me by an occupational therapist (OT) and a physiotherapist. Why two professionals? Well, the…

The end of the year is incredibly difficult. We already have to put up with more than others because of our MS.  In addition to that, the weather changes, the clocks turn back, and there is less sunlight, meaning vitamin…

The Multiple Sclerosis International Federation (MSIF) has issued new recommendations about how people with MS should adjust their daily lives because of the coronavirus pandemic. The MSIF, a network of national MS societies from around the world, first issued COVID-19 recommendations last spring. But much has been learned…

Annually, I’m frustrated by the changing of our clocks due to the end of daylight saving time. It seems so straightforward: Time either goes backward or forward by an hour. That’s it. It doesn’t seem so challenging to comprehend. Or does it?…

I have two regular carers at the moment. The first to arrive greets me with her usual efficacious, “Good morning, John!” She’s loud enough to wake the whole street. Luckily, my neighbors should be up anyway, as my carers are booked for 11 a.m. each weekday. I have mentioned in…

Last week’s column, “The Loneliness of the Long-distance UTI Patient,” dealt with my dive into the Eastern (bloc) world of bacteriophages. It would be a fun exercise (and boy, do I need some exercise) to dive into the history of the discovery of bacteriophages and antibiotics. Both fight…

Majority of MS Patients in US Report Mistreatment by Caregivers in Survey This is a serious issue, but it’s not as pervasive as this headline makes it appear. The survey looked only at the treatment of people with advanced MS, the 30% of people with MS who need help…

Finding an understanding community makes such a difference to people diagnosed with multiple sclerosis (MS).  Our partners, families, children, and friends do their best to listen and empathize, but at the end of the day, they can only empathize so much. Unless they have an illness…

My multiple sclerosis (MS) was diagnosed 40 years ago in August. I never kept my MS a secret, but I didn’t go around advertising it, either. I’ll bet, for the first 20 years or so, very few people at work knew I lived with the disease. When my MS stuck,…

When I was first diagnosed with MS, I didn’t have a choice about what disease-modifying therapy (DMT) I could take. My neurologist held up his hand and pointed one by one to each finger, with each…

Multiple sclerosis has taught me many lessons over the last 16 years, and one of the most lasting ones has been about finding balance. I can’t run like a madwoman from one task to the next and not expect consequences. There has to be a balance between work and rest.

Eurgh! Poo is what I fear most at the moment. I thought turning this column into a diary was cool. Following the greats, such as John Diamond, who chronicled his cancer to the end, takes me into some strange quarters. In this case, strained ones! Multiple sclerosis (MS) affects egestion,…

Multiple sclerosis is an unpredictable disease that can fluctuate at any time. It’s difficult to predict something that behaves so unexpectedly, but one thing you can do to feel in control is track your symptoms. Because brain fog and…

I’ve been a moderator at MS News Today Forums for a while. One of my jobs, besides rejecting the interminable bots that try to become members, is to promote interaction. This is the hard part. The bots are amazingly easy — they are so far away from getting near…

Many people with multiple sclerosis (MS) struggle with intestinal issues. There is evidence of the link between gut health and MS.  Bloating is a common result of these issues. It’s super annoying and…

There’s always something! As a columnist, that comes in handy, as then I don’t have to think too much. Stop snickering at the back for thinking that I never think. How very dare you? If any of my fellow Brits are reading this, yes, I’m liberally nicking comedy catchphrases. Why…

People outside the U.K. might not understand this column, but that’s OK. Not long ago, we had an entire week with temperatures over 30 degrees Celsius (86 F) in most parts of the country. We don’t have air conditioning here in the U.K., because normally it is hot only…

I don’t know about you, but these last few months have been rough. Like, I-want-to-crawl-under-my-weighted-blanket-with-a-hot-water-bottle-clutched-to-my-midsection-and-listen-to-Chopin’s-“Nocturnes”-on-an-endless-loop rough. Life’s just like that sometimes, especially when you have multiple sclerosis. Ever since the pandemic started, things have only gotten more challenging. Now, we have the added stress of illness, working from home (if…

Multiple sclerosis (MS) patients who interact with different sources of health information are more likely to adopt and maintain healthy lifestyle behaviors, a study has found. A combination of in-person interactive educational workshops and practical tools to implement these concepts in daily life may be the best strategy to…

After I received my diagnosis of multiple sclerosis, my nurse handed me a leaflet explaining how to tell those at my workplace I’m “DISabled,” and what that means, and another leaflet explaining how to claim DISability benefits. The thing is,…

Your alarm sounds at 7 a.m.  You grunt, smash the snooze button, and turn over. Ten minutes later, your alarm sounds again.  You smash snooze.  And repeat another five times.  Eventually, you reach for your phone with a…

I’ve been walking with the Bioness L300 Go for about eight months, so it’s time to update everyone on how things are going. The L300 Go is a functional electrical stimulator (FES) that helps counter my foot drop. MS has damaged the nerve that carries the message telling my…

I grew up sailing the San Francisco Bay. My summers were spent in sailing school. My father’s daughter, I loved being on the water. There was no place more peaceful or exhilarating. That serenity turned to turbulence one cold and foggy day. While speeding downwind, our boat broached. The…

The degree to which people with multiple sclerosis (MS) are conscientious — a personality trait that reflects responsibility, organization, and goal-oriented skills — in their work habits can help to predict their employment status in three years, according to a survey of 70 MS patients. A study based on…

Urinary tract infections are a common cause of hospitalization among people with multiple sclerosis (MS), especially older patients with progressive disease, and more attention should be given to their bladder, catheter, and general physical care, a U.K. study reported. These infections are often linked to an emergency hospital admission, and…

Every few days, I go out to our Little Free Library and change the messages on the two side walls, which are covered in chalkboard paint. One of my missives reads: “My ‘summer body’ plans didn’t work out, but I’m killing my reading list. Take that, 2020!” And it’s…

It all started on the hottest day of the year here in the U.K. My phone said it was 99 F. An old friend was coming over, and my youngest son, Jack, had kindly cleared a route to the garden. So, when she arrived, I took the route. We all…

In early July, I wrote a column about Disability Pride Month. It’s not for me, I said. I questioned the word “pride” and asked whether we need a special month to advocate for a more inclusive world. Several people commented on that column — some supported my thoughts, while…

Drinking coffee each day appears to help people with multiple sclerosis (MS) and milder disability and fatigue, with this patient group reporting in a questionnaire that caffeine allowed them to better concentrate on tasks and broaden their attention spans, a study reports. Its researchers suggest that “for selected patients” regular coffee…