MS: Many Stories – Adjustment to MS

My Adjustment to MS

Written by Sarah, Auckland, NZ

In 2016, I was diagnosed with relapse-remitting multiple sclerosis at the age of 32 after an acute six week period of symptoms from lesions in my brain and spinal cord. Some of these included numbness in arms, tingly hands, unbalanced walking with mild drop-foot, spasticity, dizziness, hypersensitivity to touch, and restless leg syndrome which led to sleep deprivation. 

Although my MRI shows old lesions, these unfortunately do not help me qualify for disease-modifying medication which cost around $40,000 per year. So, the waiting game has begun for my next ‘clinical relapse’ to start those funded meds. I like to think it will be a long, infinity-length wait until the next relapse. In the meantime, I must proactively manage my health and lifestyle to deal with the chronic fatigue and pseudo-relapses, which are old symptoms (described above), triggered by stress, heat and common viral infections such as a cold/flu. 

Since my diagnosis, I have reflected a lot on my past, present and future. At times, it has been hard to get my head around the fact that my MS condition is chronic. I’ve only ever experienced temporary illness so this is a whole new ball game. It is a process. It is a marathon not a sprint. I’m using every bit of emotional resilience and clinical psychology knowledge I have to cope with the adjustment. Here are some of the lessons I’ve learnt so far:

I am adjusting to the oscillating cycle between feeling VULNERABLE and INVINCIBLE. My vulnerability relates to my new negative world view about health and safety. It is life-changing to reflect on the major symptoms I experienced just over two years ago and to contemplate what could happen in the future. So unpredictable. Paradoxically, I also feel invincible.  As crazy as it may sound, I really do feel invincible when I reflect on my body’s ability to bounce back so well from a scary MS episode (with help of modern medicine) as well as my mind’s ability to make numerous positive changes to my lifestyle.

A major psychological challenge is learning to TOLERATE UNCERTAINTY about the future. Uncertainty about my mobility, my cognitive functioning, and my ability to carry out my various roles as a mother, wife and psychologist. My new present-focused mentality involves pushing on and hoping for the best then just cancelling or adapting plans if necessary. The outcome is that I can allow myself excitement in the anticipation of events (sometime the best part!) rather than consider negative “what-if” catastrophic thoughts around whether I will have another relapse during that time. A high level of acceptance is needed.

My new focus is on everything I CAN CONTROL. This involves focusing on quality time with my loving family and friends. This includes my supportive husband and three children – including twins – why is my body so obsessed with multiples – multiple births, multiple sclerosis…! I can control the emphasis I place on self-care practices. This now means I prioritise exercise that I actually enjoy including sunrise beach jogs, bush walks, dancing classes and kickboxing circuits. I use relaxation strategies and meditation to calm my overstimulated and fatigued mind. I also eat healthy nutritious food when I can without being too regimented. My biggest achievement has been opening up a clinical psychology private practice to follow my passion of helping mothers who suffer from anxiety and depression. Being self-employed, I choose to work part-time which allows me to adapt my schedule as necessary. Flexibility is my friend at this point. Flexibility gives me that sense of control that I never considered necessary before. 

I now choose to live a SLOWER-PACED LIFESTYLE. Simplifying life has been crucial to my well-being. As is common with MS sufferers, stress and fatigue are my enemies as they can exacerbate symptoms. I do not like missing out on fun and I previously thrived on keeping busy. However, pacing is my number one goal currently. I try not to overcommit. I am forced to reduce my caseload at work and say no to career-advancing opportunities. I am forced to have midday naps (just like my toddlers) and I am forced to say no to spontaneous evening social events. Tough stuff for someone with “FOMO” (Fear Of Missing Out), which is so common in my generation. However, I’m constantly experimenting and learning my limits. 

Along similar lines, I have learnt in a giant hurry to TRUST MY JUDGEMENT. I know my body – that is how I got diagnosed so quickly when we encouraged my GP and neurologist to order an urgent MRI. I’m learning not to misinterpret symptoms as signs that I’ll be in a wheelchair by the end of that day –  this is an intense intrusive thought that is less likely at this point.  I listen to my body. My actions are in tune with those messages and I ignore the unhelpful “should” thinking statements when scheduling my week. When my body needs rest, I rest. Why push it? I monitor my symptoms with a basic traffic light system I invented– red means I can’t function so cancel all plans, orange means I’m feeling average with extra symptoms so slow down and rest up, and green means I’m just experiencing the usual fatigue so carry on. I’m happy to report I’ve been mostly green lately.

Also, I’m aware of not getting caught up in the BLAME GAME where every physical health symptom is blamed on MS. For example, recently I found out that my fatigue was partly attributed to low iron stores not just MS. I am not immune to other physical problems.

With a diagnosis of MS, you get a quick slap in the face to PUT THINGS INTO PERSPECTIVE. Naturally, I felt the desire to make the most of life, be brave, take more risks and reduce the time-consuming, draining desire for perfection. I have been setting exercise goals, writing, ziplining, camping adventures and going on spontaneous trips away.  Life is all too serious sometimes, so I wonder why should always play by the rule book. 

Throughout this process, I have recognised that SOCIAL SUPPORT is key. I’ve learnt to ask for and accept help. Going on a mission to be strong independently is pointless. We are social beings. I’m also learning not to bite if others seem overprotective as I’m aware they may feel helpless. One difficult but necessary adjustment has been to accept that my kids are more energetic than I, so I am forced to accept help from others including extended family and daycare. This was not in my original parenting plan but needs must. They are happy, so I must be happy also. I have picked the best players for my support team including a fantastic neurologist, nurse and field worker – I am very fortunate.

I know it is important for everyone to practice GRATITUDE – about both general and specific things. And I do this regularly. I truly, deep down, feel lucky. More lucky than I ever have. I’m all about the cheesy mindful moments such as swimming at the beach on a sunny day or dancing with my kids to loud music. I also celebrate milestones of wellness. This certainly increases my happiness significantly. I like to believe that this subjective well-being contributes to my current remission. 

Finally, I am learning to put my desire for denial aside by raising awareness about this sometimes invisible MS battle. I am not alone.