Kathie – aged 45
I enjoy a very fulfilling career. I am also a daughter, a partner, and the mother of three beautiful children, ages 12, 10 and seven.
I have suffered from ET since at least 2000 and now have Post ET-Myelofibrosis which progressed in 2017. However I recall having ET symptoms as young as 15.
It is difficult to share my experience in the sense that, if anything, I have learnt that we are all different; we all have our configuration of symptoms and our style to go through life in its multiple bemols. However, I will try to summarize what I think has been very useful for me; it does not need to be your style:
Helpful learning along the path:
- The illness is not linear. Learning to see the condition as an evolving trajectory that is not necessarily linear (start, progress and die) helped me feel more fulfilled and enjoy my life more in all its pockets. For instance, my symptomatology is changing and evolving with times in my life. I recall feeling very ill; (super itchy, mega tired, bombarded by intense migraines and visual impairments, abdominal pain, and heavy doses of anxiety), and times life is pretty calm with very minor, almost imperceptible negative sensations. This has never been linear. I can go down the hill and go up the mountain many times. Knowing that doing poorly does not mean the start of the end has been a great consolation. I must confess doctors’ graphs do not help; the lived experience is more of the form of a spiral or a heart.
- I scheduled my fatigue. One of the good things that I have learned is to plan my week’s activities, avoiding overcharge as much as I can. For instance, I try to have no more than one crucial activity/meeting per day and schedule time for resting. If I have an essential energy-consuming duty, I don’t schedule anything near it or plan little resting strategies. The more I rest, (colouring, being with my plants, reading poetry, writing poetry, napping, having a yoghurt, meditating, stretching, dancing, feeling my feet, feeling the air, or lying down on the floor thanking the universe for the privilege of one more day with my loved ones), the most I can be creative, productive, and helpful to others.
- If I am unwell, I voice it and accept it (I often say “no” to my children, “no, we won’t read for the school tonight”, “we won’t practice the multiplication tables”,” I won’t help you wash your hair” and “we won’t contribute to the fundraising activity”, “you won’t bring brownies tomorrow”). I practice “Fierce Self-Compassion: https://self-compassion.org/fierce-self-compassion/. I try to be there with all my heart when I have the energy. Otherwise, I compromise. I try to be a good-enough mother, not a perfect mother. My children know mum is ill, and therefore some days she feels down, and other days she feels excellent (being ill is normalized), although I try not to make a drama out of it. However, it is not always a success or an easy thing to do. For instance, during Covid, my children were scared to kill me if they brought covid from school. It is hard to find balance, and I often wish I could go the extra mile. But ‘don’t push me over my limits’ is proving to be a healthy way to navigate my condition. I think my children love me and are proud of me, and get beautiful things from me. I believe we are educating compassionate human beings. They also teach me every day about the easiness with which they take things and how helpful they can be.
- Something little does miracles. After 20 years of devastating migraines, I learned that a baby aspirin a day was the perfect solution. I learned not to despair as sometimes the answer will come unexpectedly. For instance, when I discovered the Atoderm – Bioderma skin products. Or that if I put them in the fridge, that would enhance its magic soothing.
- Trust the science and let go. Perhaps controversial in the times of self-advocacy. But I believe in finding a balance between activism and let do the experts. As I now have the best haematologist on earth, there are very trustable sources of information as MPN groups. I read fewer scientific papers and abandoned social media groups that used to scare me so much. I remember seeing the life testimony of a mother who died from a transplant. I got traumatized for a month. So, balance and making space for life has been a helpful tip in my case. I stay away from social media exchanges in that sense. We are all different; what happens to others won’t necessarily happen to you. When I was pregnant with my first baby, my haematologist said I might lose the baby because of my condition. He told me his wife (also ET) lost four babies before having their first one. This never happened to me. However, I have seen many friends who don’t have MPNs losing their first babies. So, it won’t necessarily happen to you, so thinking about all possible outcomes can be horrifying. As much as I can, I try to let the doctors deal with statistics.
- Be vulnerable. Some days I sit down and cry and let go of all my worries. It helps me. I share many of the concerns you may also have. For instance, I see my children, and I feel the horror of thinking I may die without seeing them go to their main milestones or without witnessing who they are to become. I allow myself to feel sad. It is only normal; it is hard. I often have to cry out loud.
- Enjoy the moment. I love my life; I love it every minute, every second. I sometimes stop to feel how happy I am. I hug my children with all my love and feel the privilege of being their mother. I once read a poem about the fact that even if we are bad students, we will never resit or revisit a particular spring or winter in this world. I think about this every day. This moment won’t come back. I don’t keep anything for a special occasion; every day is special. Our societies put a premium on speed; I try as much as possible to slow down.
Thank you for reading and I hope you find at least part of this resonates with you. I wish you well.
I read one recent paper from various haematologists saying that we needed to change the vocabulary used in clinical trials because we are now working more on disease modification than in previous times so we may see an insightful transformation come soon; I celebrate this and feel hopeful.