Sylwia's journey

Being a mother is an incredible journey full of love, joy and challenges. Imagine adding Myasthenia Gravis (MG), a chronic disease that causes muscle weakness and fatigue, to the mix. Today, Sylwia Lukomska, president of the MyasteniaFace2Face, shares her inspiring story of facing the trials of MG while raising her children.

The journey began with the arrival of twins and a challenging Caesarean section. Sylwia explains how breathing problems developed, leading to a stay in hospital. Little did she know that the anaesthetic used was the culprit, aggravating her MG. Constant fatigue overshadowed the early days of motherhood. Hospital visits continued and guilt loomed as exhaustion and muscle problems clouded precious moments with her children. Sylwia adds that these challenges shaped her early experience of motherhood.

Receiving the diagnosis of MG during a hospital stay brought immediate concerns. Sylwia explains how, two decades ago, internet resources were limited, adding to her fears about managing daily life, family and work.

The weight of unknown challenges laid heavy on Sylwia's heart. Sylwia adds that this moment marked a pivotal point in her journey as a mother.

Being a mother with a chronic illness means redefining the ideal of motherhood. Sylwia talks about coping with physical limitations and the mental strength required. Getting rid of unnecessary tasks, focusing on relationships and accepting imperfection are important lessons, Sylwia explains. Sylwia adds that patience becomes a shared virtue between the mother and her supportive family.

Creating a support network is crucial, Sylwia advises. Planning activities, being organised and knowing when to let go are essential strategies. Sylwia encourages fellow MG warriors to prioritise and embrace the most important aspect of parenting: being present for your children. Sylwia shares practical tips for navigating the delicate balance between symptom management and parenting.

With a support group of thousands, Sylwia emphasises that many mothers with MG are thriving. She advises finding a good neurologist, building a support network and staying positive. Embrace the journey, Sylwia adds, because why choose negativity? Sylwia shares her uplifting words of encouragement for mothers coping with MG.

Laughter becomes a coping mechanism, Sylwia reveals. Finding humour in symptoms, such as walking "like a duck", brings lightness to difficult situations. Sylwia shares anecdotes and adds that a good laugh can be a powerful ally on the journey.

With a degree in education and as a therapist, Sylwia explains how her background helps when discussing MG with children. The truth is crucial at every stage of development, Sylwia adds. Children, who are resilient and perceptive, deserve honesty. Sylwia stresses the importance of dispelling fears with facts and maintaining open communication.

Finally, Sylwia's journey teaches us that while MG may change the journey, it doesn't define the destination. Motherhood, with all its twists and turns, remains a journey worth embracing.