Wednesday, January 20, 2021

Learning About Hope

Learning about hope gives me hope. Hope, faith, endurance, resilience, conviction and belief, they all contribute to my level of hopefulness.  They help me feel like I can make it through hard times.  The conditions I’m enduring will subside, or I’ll figure out a way for it not to hurt as much. 

I’m learning that people with hope do better physically.  I’m realizing that it’s not a feel-good thing or coincidence that at my neurologist appointment, the questionnaire asks me how many times in the last month I’ve felt hopeless. You may be familiar with this question. It reads:

“During the last 30 days, about how often did you feel hopeless?  Choose among the answers: All of the time, Most of the time, Some of the time, A little of the time or None of the time.” 


Some internet research has shown me that this question is from the Kessler Psychological Distress Scale.  It is a measure of exactly that, distress.  People who are hopeful live with less distress.  It doesn’t mean their lives are less challenging or easier.  Actually, they’ve learned that life conditions don’t have a correlation to how hopeful a person is.  People with similar challenges can have vastly different levels of hope, and even the same person can have different levels of hope at different times in their life.  I’ve learned it takes effort to be hopeful, but our circumstances don’t dictate our wellbeing.  


There are things we can do if we’re feeling hopeless.  Hope and motivation do well with ongoing support and inspiration, and often they involve other people. Tell someone you trust, talk to a counselor, reach out, and lose any guilt or shame for needing help.  Answer the question honestly when the doctor’s questionnaire asks you. 


We’re all going to have different things touch our souls and give us hope. Just looking for things that make me hopeful leads me to find reasons to be hopeful.  Being clear about what is possible and what is probable narrows my focus for where to direct my attention productively.  


I’m excessively aware that I can’t control most of things in life.  I can‘t control what others do, I can’t control the pace of scientific advancements, and I can’t control my body’s Multiple Sclerosis advancement.  


I can’t unilaterally fix the world’s injustices, but I can contribute a little in every interaction I have.  


I can’t prevent MS progression and disability in my body, but I can live in a way that gives me the best odds of doing as well as possible.   


I can’t speed up medical advancements, but I can stay informed, participate in studies and contribute to causes that are doing that work.  


Acknowledging the many areas where I lack control and the few where I can contribute eases my stress level.  It lessens the degree of responsibility to a manageable level where I feel like I can do something that matters. That gives me hope. 

Friday, January 1, 2021

Working and Living with Multiple Sclerosis

For me, living and working well with Multiple Sclerosis is better when I know my value, have a healthy definition for working hard, build relationships, am reliable, and work toward shaping my life to nurture my wellbeing and accommodate MS.

MS can shake a person’s confidence, and it did mine.  Now 50 years old and 12 years post-MS diagnosis, I feel very confident in my abilities and aware of my limitations.  It’s been nice learning that MS won’t take away my sense of humor or my intelligence.  I can say the wrong word sometimes or not retrieve a word I want, but it doesn’t make me less intelligent or unable to contribute in the work force.  I try to give MS the right amount of credit.  I’ve closely watched people in meetings, and I’ve noticed people grab the wrong word or say the opposite of what they meant all the time. If I misspeak, owning it and rolling with it makes it less clumsy and awkward for everyone.  I have MS, I’m not perfect, and I still have value.  


I had to redefine working hard from working as much as possible to working as effectively and efficiently as possible while supporting my health needs. The possibility that pushing myself too much could lead to disease progression and disability is scary and stressful, and also very real.  MS fatigue will not allow me to power through. I do what I can, build breaks and rest into daily life, plan ahead and anticipate time will be needed for the unexpected every day. Doing these things helps reduce anxiety and keep me going. 


Where possible, I’ve built relationships at work with people who have my back and will honestly provide feedback on how I’m doing. I try to listen to them when they show concern and see their feedback as a gift rather than a criticism.  They may not always be right, but they can provide good feedback and I know they’re looking out for me. 


The unpredictable nature of MS can mean my plans need to change without notice.  Being reliable to me means I know the minimum I need to get done and have backup plans in place so that I don’t leave a trail of chaos when I need to focus on my health.  


Wherever possible, I take measures to build a life that will accommodate the challenges of MS and nurture my wellbeing. Your MS issues will be unique, and your accommodations and life preferences will be unique.  For me, downsizing and minimizing my home care obligations helps me use more of my limited energy on work, hobbies and relationships.  


There may come a day before typical retirement age when I need to end my career chapter. Recently a friend of mine with MS who has had to leave the workforce told me to work as long as I can.  I intend to, and I also plan to monitor my health to recognize it if the time comes that I need to stop working.  Until then, I’m really grateful that I still get to work and feel successful for my efforts.