Guilt and Gratitude Are Both Part of Life With MSby Lisa Emrich Patient Advocate
It’s a glorious day. The sun is shining, I’m working in the house on our down-sizing project, and I’m totally wiped out. I’m feeling tired and this is a good thing.
Multiple sclerosis totally sucks. Let’s be honest. I know this from personal experience. I’ve had periods of time in the past where executing the sit-to-stand movement was a tremendously difficult task that involved pulling on edges of furniture. When I get really tired and weak, my hip muscles tend to make walking look more like lurching. And sometimes, I feel like I’m wearing a rubber bodysuit when the sensory receptors in my skin take an unexpected vacation.
However, today, MS was just a side-kick that made its presence known on just a few occasions. It didn’t derail my plans or the execution of those activities, as long as I made sure to incorporate rest into my routine.
I am one of the fortunate ones living with MS who has achieved stability after years of ups and downs, relapses and partial remissions, and noticeable MS symptoms. In more recent years, symptoms have improved and I experience less disability. To be honest, ten years ago, I never thought that I would be happy to feel physically tired after a hard days work.
MS has been part of my life for at least 19 years, although I was only diagnosed in 2005. Over those years, I’ve witnessed what it can do to people and their lives. MS is a monster that has no manners and can be worse than a proverbial bull in an antique china shop. It often leaves a wreck in its wake.
Wellness and guilt
So why do I feel both satisfied at earning my tiredness with hard physical work and guilty for feeling “normal healthy person” fatigue?
I see so much pain and hurt within the wider MS community. No two people experience this disease in the same way, but the majority of people with MS do experience loss of different types. Loss of relationships, loss of jobs, loss of abilities, loss of self-confidence, loss of mobility, loss of financial stability….the list can go on and on. I’ve experienced many of these losses, too.
I’ve also gained many things. Increased appreciation for the good times, a better ability to forgive myself for not being perfect, increased empathy and understanding for what others go through, a greater appreciation of my previously taken-for-granted cognitive abilities, and a reassuring sense of community within our MS community.
Sometimes I feel guilty for feeling and doing so well. It’s not fair that friends of mine can no longer cross a room in only a few steps. It’s not fair that friends cannot obtain pain relief because of changing health policies regarding medication-prescribing habits. It’s simply not fair that I can ride my bike for 30 miles while others may only be able to pedal an indoor exercise bike (with their arms or legs) for less than 10 minutes. Nothing about MS is fair.
Wellness and gratitude
While I feel guilty about doing well, I also feel enormously grateful. Anytime I share minor victories with my friends, each of them is sincerely encouraging and supportive. Never do I sense of tinge of jealousy or envy coming from their words or expressions. I am blessed with wonderful MS friends who understand well how unpredictable MS is and how very precious it is when things are going well. My friends are also there when I just need a kind ear to hear what’s going on in my life, good or bad.
Although my personal friends are so awesome, I still feel hesitant sharing my good fortune publicly. To be perfectly honest, I don’t want to make others feel bad. I don’t want people to compare their experience to my own. But I’ve been told that people want to hear more good stories about living with MS.
So my good story of the day is that I was able to pack up some boxes of items and bring them downstairs to our designated donation area. I was able to empty out a couple of kitchen cabinets and clean the baking dishes that needed some extra scrubbing before I list them for sale. I was able to organize some books on the shelves to make it easier for someone to come choose a few they’d like before we donate the excess.
I’m grateful to have made it through the day. I’m also grateful that I get to sleep as much as I need tomorrow to recover. I’m enormously thankful that I have developed the confidence to be able to publicly say that “MS can kiss my pretty, productive ass.”