Life with ITP - By Shehzma Hirani
I have ITP.
I have lived with ITP for over twenty years, that's half my life. After receiving first class honours at my university graduation in my early twenties in 1999, I noticed an unruly spectacle of unexplained purple bruises sprawled across my body which I ignored with indifference. However, an over protective mother forced a GP appointment, revealing an over protective immune system, platelets in single figures (average being 150-450), which overnight, led to, unbeknownst to me at the time, a long term diagnosis of chronic ITP. Since then, it’s been my shadow through my training and career as a teacher, walking with me through my marriage and the birth of my two beautiful daughters, and now following me into my forties with a further distinction at university.
I've had relations with a range of treatments including the dreaded steroids (a destructive relationship at an impressionable age where I became unrecognisable inside and out), a splenectomy (I heavily invested in it but it didn’t work out, scarring me for life and leaving me with a lifetime of Penicillin V as a souvenir); I’ve toyed with IVIG, platelet transfusion, Tranexamic Acid, Anti D, Azathioprine (fear of long term commitment), Romiplostim (extremes in behaviour) and Rituximab (the one!).
It’s not been an easy road relapsing often at milestones in my life; writing essays whilst on a drip when training to be a teacher; three months before my wedding day, feeling far from the blushing bride; on my thirtieth in Paris; discovering blood, blisters, blemishes and bruises and requiring treatment whilst pregnant with my second child; during my fortieth when ‘life begins’, or in my case, when it comes into question, yet again. Devastating but I got through it. I had to.
I have long phases of not being well, phases of being well, and phases of somewhere in between. I've recorded every single platelet count, from 2 to 500 plus, and logged every corresponding treatment. I have journaled my journey. I am officially an ITP geek!
I don't like to be defined by my ITP but there are days when I can't see past it, I can't see beyond my own skin. Literally. When I feel low, I obsessively look in mirrors, trying to catch it, before it catches me, persistently inspecting every blemish, searching for the potential bruise from every bump, always on high alert, from when I am brushing my teeth to when I am itching my skin to inspecting red imprints of my socks on my feet. I remember as a teacher marking books and panicking when I spotted red blemishes on my hand, only to find in relief that they were the specks from my marking pen. I used to eat an abundance of beetroot (in vain that it would ‘cure’ me), and again being caught off guard by crimson fragments stuck in my teeth or stains on my fingers.
Although the nature of the symptoms has changed over the years with changes in my body, my age, changes in medication and so on, the bruises, the red dots (petechiae), and the bleeding (gums, heavy menstrual cycles, unstoppable blood from anonymous cuts, mouth blisters) remain a constant feature. What has worsened above the visible symptoms has been my well-being. When I feel my platelet count threatened, bone tired weariness and weakness can consume me from the inside out, and it can be a struggle to put one foot in front of the other. I can feel unbearable fatigue, a lack of drive and energy. My eyes grey and sink, giving me away; my hair thins, my body wilts. I over do the make-up to feign normal. I feel drained of everything, leading to lack of exercise, too much sleep, too little sleep, low motivation, and emotional overwhelm. I feel over sensitive, overanxious, misunderstood, breathless, nauseous in my own skin, out of control, deflated. I envy people with their soaring energy levels and strength in their eyes.
Ricocheting thoughts engulf me. Will I need treatment or will the platelet count rise without intervention? Do I carry on, battle, defy or surrender? If I need treatment, how will I manage work and childcare? Am I actually low or am I just really tired from juggling life, or is this just how it is to be getting older? I incessantly try to find patterns of why a relapse may have occurred, scrutinising my diet, any changes I may have made; locked down in complete uncertainty and paranoia.
When I do have confirmation of a relapse, once the troublesome veins allow a blood test to give the dreaded number, life becomes complicated yet so simple. I can go numb, on auto pilot, following procedure. I can slip into social hibernation opting out of life and relationships. Conversely, in moments of clarity and enlightenment, all the seemingly big things that I worry about pale into insignificance and I take the opportunity to re-centre, reprioritise, refocus on what is important, change perspective, readdress balance, embrace life, notice the sunset. I appreciate things around me that before may have passed me by. Maybe it's a good thing, bypassing some of the indulgences of the material world. All I want in times of feeling unwell, all I crave is to feel good, feel well enough to enjoy the world around me.
When I have longer phases of feeling well, it’s like nothing ever happened. I can feel ‘normal’ tired and have the strength to carry life, to see things in perspective. My libido for life slowly resurrects itself. Internally, I allow myself to let my guard down gently.
Although I am beginning to notice timescales, behavioural patterns and internal influences now before a relapse, ITP at first, struck me out of nowhere. As a result of an unpredictable and ambiguous condition, I feel that I may have become a type of person or have developed particular tendencies. I am often scared of change, scared to take risks, to try new things, to be ambitious, to follow my truth, to make plans in case I don’t feel good, in case I fail, often taking a backseat in life. I’m cautious to trust others and to trust myself, wary of investing too much in people and relationship; scared to take knocks in more than one sense of the word, scared to say yes to life, always with one foot in, one foot out, constantly conforming and seeking external reference and affirmation; feeling defensive, protective, indecisive, fractured, compromised, lost; living in a metaphorical and physical bubble, not knowing when I will be caught off guard, overzealous, like my immune system. Is there a connection between my ITP and my emotional psyche? Which one came first? Which way round is the cause and effect? How much of my persona is due to my ITP and how much is down to my historical tapestry, my ego, my lifestyle and physical and emotional diet, is a point of reflection and awareness.
I have fought ITP as an enemy but also allied with it to achieve what to me are great things. It can be my nemesis, also my friend. I try not to become complacent or take things for granted but to use it as an opportunity to dance with life. ITP is idiopathic, no definite cause, no definite cure. Sometimes, I have to find my own inner cause, my own inner cure, my own meaning from within; to bow to my existence, handover, be kind to myself, live gently and without apology, unmask, accept, align with my voice, be happy, be me. My ITP calls me back to life.
I am grateful, grateful that since my diagnosis all those years ago, so much support from friends and families has been there, so much research has been done by experts which I participate in as much as I can, so many different treatments have been discovered, so many wonderful people have championed the cause; life-affirming professionals who support me inside and out beyond their remit, ‘angels’ who ensured the safe delivery of my treasured children. When I speak to the doctors and nurses, I am heard. Action is taken swiftly and I know that everything soon will be okay and I will get another chance. As I sit in the haematology department adjacent to oncology, I am humbled.