This is just not any kind of day, it’s an MS Day

An MS Day is a very special kind of day. It is not like a day of the week, it is not a public holiday, it is not an anniversary or birthday. All of these kinds of days can be found in a calendar. You know when they will be. Everybody else knows about them. So if an MS day is not like one of these, then what is it?

Those of us with MS will no doubt know exactly what an MS Day is. It is a day when even the simplest and most sedentary of tasks will seem like the final ascent of Everest. Getting dressed can seem like the Krypton Factor (an old ITV TV game show series involving intellectual and physical challenges). Remembering how to use the TV or remembering the names of family members can seem impossible. Your body is inexorably drawn to the sofa assuming you have managed to make it out of bed.

The symptoms that you may experience on an MS Day are specific to ourselves as dictated by the location of the brain and spinal lesions that we have and also the state of the overall MS Progression. Having to cope with the pain, imbalance, lassitude, cognitive fog and visual disturbances is typical but not an exhaustive list.

Where do these MS days come from? I am sure I not alone in searching for the source of the MS Day. The vast majority of people who have MS must have searched, as will their carers, family and true friends. In my search, some of the places I have looked include

  • on a specific day ¬†of the week,
  • after a stressful day at work,
  • when you have a deadline for official forms to be completed,
  • after a late night,
  • or even after an early night.

MS Days can indeed be found in these places. However, if you search for an MS day in these places, your are not guaranteed to find one. You see, an MS Day can be either elusive or common place. Sometimes it’s seems as if they can be both things at once. The source of the MS Day must be therefore be elsewhere.

Having ¬†searched long and hard for the source of the MS Day since my diagnosis without success, I have now decided that the time has come to give up my quest. I now prefer to devote the time saved in order to ‘manage’ these days.Via a process of trial and error, I have determined that MS Days can only be managed by using a combination of physical and mental management.

Physical management is the most straightforward and is likely to be the first method to be tried. Just staying in bed is one option. When you have no choice over staying in bed, hydration, incontinence and bowel problems ensure that you will have to get out of bed at some point. Crawling on hands and knees to the bathroom is not an attractive sight.

If you can, dragging yourself to the sofa (keep a spare duvet there) is the next best thing. It is not a day for watching trashy TV, reading or listening to music. Optical neuritis will make looking at the TV impossible and painful. Cognitive difficulties will make your brain hurt as you will be unable to comprehend even the simplest of topics of conversation. You will still probably end up crawling to the toilet.

That leaves just the mental management of an MS Day. I am still learning this part. I have been lucky enough to gain the support of an excellent clinical psychologist. I no longer become stressed when I have an MS Day. When I am able, I have a number of small day to day activities that can be undertaken. I therefore mentally do not feel that the day has been lost.

The result of all of this is that instead of the MS Days ruling my life, I am in control.