It’s September and that means that it’s ITP Awareness Month. So I thought I’d share a bit more about my ITP journey with you to give the disease a bit of a human face.
Last year I shared the story of my diagnosis and the fear it brought me in the early days. This year, however, I want to share my story of living; my story of coping and getting on with things.
First, some key bits of information so that you know why it’s such a big deal:
- ITP stands for idiopathic thrombocytopenic purpura which is, essentially, a very low platelet count. A normal count is 150,000-400,000 (generally said as 150-400).
- The lower the number, the higher your risk of bruising and prolonged bleeding/healing – or at the extreme, spontaneous internal bleeding and haemorrhaging (“brain bleeds” and such).
- It is classified as a rare autoimmune disease.
This story is about my personal journey. If you want more information on ITP, check out the following links:
But this isn’t about the scientific side of ITP, this is about the human side – the emotional, hands-on, suck-it-up-and-live-your-life side of ITP.
This is my story; this is my life. Are you ready for this?
I was 21 years old when I was first diagnosed with ITP. It was a frightening time in my life and the weeks and months following my initial diagnosis were filled with stress and tears. Between the extreme limits that were placed on my activity levels and the more extreme side effects from the medications I was on, life was miserable – absolutely and completely miserable.
Somehow, I managed to survive those first couple of years and my platelet counts stabilised to a mostly “normal” level – only falling below 150 when I was sick. But back in 2002 – on my 28th birthday! – I learned that my ITP had come back full force. No amount of medication seemed to help, so it was determined that I would just have to “live with it” from then on.
And that’s what I’ve been doing for the past nearly-12 years – living with ITP. Or, rather, I’ve been learning to live with it. It’s not the easiest of lessons to absorb, you know!
So, how do I do it? How do I live with a medical condition that could be the literal death of me? The short answer is that I just live. I live and I try to forget about it – although it is a part of my daily life.
Because medications rarely help to boost my platelet counts, I’ve opted to forgo regular treatments. And I have stopped having monthly platelet counts, too, so I don’t necessarily know how low – or how high! – my counts are. Instead, I have to pay attention to the “signs” my body is showing me.
Unfortunately, my platelets are extremely unstable meaning that I can have fairly unpredictable counts. I can be 90 one day and crash to 10 the next. And every once in a blue moon, they’ll be over 150 (but only just!).
This instability means that I really have to be diligent. It’s not enough to just assume that I’ll have a crash when I’m sick (yes, the common cold kills my platelets!) but I also have to assume that they might crash randomly. (Although I know that what seems random to me probably isn’t random at all.)
That diligence means that I am very familiar with my legs, as bruises and petechiae on my legs are one of the first and most visible signs of a low platelet count for me. So every evening, before I go to bed, I inspect my legs. I take time to inspect every little bruise I may see to determine if I knocked into a coffee table or if it’s just a spontaneous bruise. And when I wake up the next morning, I inspect my legs again. If there are new bruises overnight, it’s not a good sign because let’s face it, I didn’t walk into a chair in my sleep!
Of course, bruises don’t panic me too much because I know that it’s possible to have knocked myself without realising it. And I know that I bruise very easily because of the condition so it’s not really unexpected to have a new bruise on my legs every day.
But petechiae? Well, that’s another story. When those suckers show up, I know I’m battling a low count. If they show up in conjunction with a cold, when I’d expect a low count, I’m unhappy but am OK-ish with it. But if they just show up randomly, I’m a mess!
The biggest problem I face is that treatments don’t generally work for me. And that means that when I have a low platelet count I have to rest and take it easy. I have to stop running and often have to stop myself from doing household chores, too, as I tend to overdo things. So, basically, a low platelet count means that I have to sit on the couch doing nothing for a few days.
Thankfully, my body normally snaps back to shape after a few days and my counts will return to my normal which is around 60-80. Yes, that’s still low, but I can do most things (like running!) with counts over 50.
I fear for the day when my counts don’t increase with simple rest. I fear for the day when my counts are so low that I am hospitalised and unable to take control of my life. I fear for the day when my counts are really low and there are no outward signs – because that means I am out and about with a dangerously low count and I don’t even know it!
But I cope. And I cope by going out and living my life as much as possible. I try to be active. I try to remember that life is for living and you can’t live if you wrap yourself in bubble wrap and hide inside.
I cope with ITP by taking control of it instead of letting it take control of me.
Want to know more about how I cope? You can check out all of my posts tagged with ITP here. Or check out these specific posts:
- The life of tiny platelets: Enjoy some fun cartoons that tell you all about what platelets do!
- Paranoia: The horrible part about ITP is the worry and paranoia about low counts!
- An ode to my platelets: Of course, sometimes that paranoia is warranted …
- A stranger saved my life: How a random blood donor saved my life.
- I’m high: But, luckily, I’m generally sporting an OK platelet count.