ITP Awareness Month: Living and coping

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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:

[Image note: That’s a digital drawing of my petechiae from a story I wrote back in January 2011. Turns out that my counts were 10 at the time. Yikes!]

30 Replies to “ITP Awareness Month: Living and coping”

  1. Lovely to read about your experiences. I was diagnosed two months ago and am still very much in treatment. Down from an initial 130mg steroids to 50mg per day but still suffering from the side effects. Horribly hot, back pain, lack of concentration etc. Not nice.

    Very much hoping to get back to work in the next few weeks, think being back in a routine will help!

    Reply

    1. Oh, yes. The evil side effects of the evil steroids. I fear they are the worst part about ITP. I have managed to stay away from all treatments for 8 years now, though I’ve had the threat of steroids when my counts have gone to single digit. Thankfully, I’ve had doctors who’ve been happy for me to rest for a day or two before starting drugs, and I always have bounced back to a safe-enough number.

      I was diagnosed in 1996 and didn’t have access to people’s personal stories as the Internet wasn’t what it is now. I am a writer so it just seems to make sense for me to share my story with the next crop of ITPers. I’m always pleased to know that my words are finding the right people!

      As for getting back to a routine, you will. You might have to give up hobbies like knife juggling and extreme mountain climbing, but you won’t have to give up living and enjoying life.

      Good luck with your battle – and with the steroid tapering. It gets better. I promise!

      Reply

  2. Great to know I’m not the only one going through this mystery that is itp, was diagnosed in may 2012, still on steroids 2.5mg a day for another week, bloodtest on Friday then hospital Monday to see what the count is an what the next step will be, feel tired a lot and have put 2 stone in weight on.hope to be off steroids next week and find the energy to start getting fit again.

    Reply

    1. No, Darren – you’re certainly not alone! I hope that you’re able to get off the steroids soon and that your counts improve.

      As for finding energy and getting fit, I’ve found that forcing myself to get out and do something – even when fatigued – helps. And the more I get out, the more energy I have. I know everyone is different and we all struggle with our own demons, but I manage to run marathons (though mostly shorter races like 5 and 10ks) and I do it with ITP. (Though when my counts are really low I have to take a break from running all together.)

      I’ll be cheering for you from afar!

      Reply

  3. Thank you so much for telling us your story. Love to you, my ITP friend

    Sincerely yours,

    Lavinia

    Reply

  4. Nice story to share and continue to live life. Im also diagnosed with itp long time ago and until now, i dont like to take steroids with its side effect. I live everyday with my gum bleeding and i hope someday my itp will be gone. Goodday.

    Reply

  5. Hi, lovely to read your account of life with ITP, I know all to well what you have been through and I’m amazed at how differently it affects people. I have had this condtion since I was 2 years old, I’m 42, almost 43 now. Back in the 70’s, for a young toddler it was so daunting and confusing. I had numerous blood tests and they didn’t have that handy needle with the vacuum suction so they can fill endless amounts of test tubes. I was like a pin cushion and used to scream the place down whenever I saw one. I had various tests and mom and dad were told at my lowest point I will haemorrage and to rush me to hospital should it happen, I had a helmet made, much like a prototype for a cycling helmet as They feared a serious head injury. And I did, I was 3 and a half, I went to the bathroom, felt groggy and felt the top of my head with my hands. It was soft not hard like touching the skull. I told my mom, she ran to a neighbours house (we didn’t have a phone then)called for an ambulance, put my helmet on and off I went to hospital. After a few months, a splenectomy and filled with penecillin I went home, I regularly visited for consultations and check ups till I was discharged at 15 years old. All was fine no problems till I turned 25. I can only think that a couple of vaccines I had together set off a relapse cos it all started again. Deep black bruises, the petechia. I had a bone marrow test, and large doses of steroids. My counts went up and down like a yoyo. I had so many pills I was rattling. And I felt exactly how you did for a year, until finally , the consultants came to the conclusion that as I was steroid responsive, no other treatment could be given to achieve lasting results. If I relapsed, it’s a short sharp shock to the system for me. A 4 week treatment of steroids brings it stable again. I currently run along a steady 19-25 count, they are happy it will not rest any higher but it’s not dipping like yours does. When I first went back it was at 4 and was like the big dipper for ages, hitting 185 after an IV feed of strong steroids. I am like you, if I have a green bruise and can’t remember bumping into anything, I don’t fret, it’s a normal one. In the shower I check my legs, for ‘the rash’. I have the flu jab every year and pneumonia and meningitis vaccines regularly, one at a time lol. I also have the Hibs one, for flu type viruses. I find strong viruses can set off a relapse, my last was a throat one as I lost my voice and had dark bruises and ‘the rash’. That was about 4 or 5 years ago. I work nightshift in a freezer warehouse, distributing Walls Ice cream, I recently had a health assessment for my job and the doctor was happy for me to work there on the nightshift. He just advised that I would have to be careful if I have a relapse and was given steroids I would be high, like taking speed, haha thanks mate. Any way, a bit long winded but gives you another perspective of how it can affect people and that I too, lead a very much normal life, but I’m always watching my body. As it will let me know when to slow down and take time out. Take care Frances and good luck, hope you never need to use the calcium thieving tablets haha.

    Sheila

    Reply

    1. Sheila, thank you so much for sharing your story! It sounds like you’ve had quite the time of it, but it’s great to hear that you’re able to remain fairly active. I think one of the key things to managing ITP is being able and willing to “listen” to our bodies by looking out for signs of a low count. (And checking legs in the shower is a great idea, except I’m blind in the shower without my glasses. Darn!)

      Reply

  6. Thanks, Frances for sharing you story here. Thanks Sheila, too. I was diagnosed with ITP just over a year ago, so it’s still early days. I developed it despite already taking immunosuppressant drugs – I had a liver transplant in the late 1980s, at about the same age Frances was when she developed ITP. This year, my counts have been fairly stable and thankfully I don’t get too tired, all in three figures, though I have quite a lot going on healthwise, attending three different clinics, so I can’t take my eye off the ball. Best wishes.

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  7. Thanks for sharing Frances, My husband was diagnosed at five, splenectomy almost straight away – remission until the age of twenty one, his platelets for the past two years have been 3 and 4. No treatment by hospital – we have now requested an appointment with an ITP Specialist which is coming up on the 24th of this month – we would just like to express our worries and concerns with his current ongoing battle with fatigue, severe joint pains and it seems constant nose bleed. He is now fifty six and has lived with this all his life, without much help I feel. The ITP support group has been a wonderful find.

    Reply

    1. Hi, Geraldine. Thanks for your note. I am pleased to hear that you’re finding the support group to be helpful and I hope the ITP specialist can help your husband. All my best, Frances

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  8. Hi Frances, good to hear you are coping. Thank you for sharing your story, I’d like to share my Daughters.

    My Daughter Amy was diagnosed with ITP when she was 15,years old, she’s nearly 23 now and after years of steroids, immunoglobulin’s, rituximab and other drugs and all of the ups downs and depressions, not forgetting endless admissions to hospital and platelet counts below 10 and even ZERO. She is finally in remission, and why, ?

    because she asked her GP to refer her to another hospital as she felt there was no proper plan in place for her treatment. as the platelets went down the steroids went up and so forth. She has suffered so much and after seeing a new Consultant at another hospital they done every test going, and managed a plan which gradually weaned her off the steroids once and for all. At this new hospital they also had a Haematology Counsellor which we didn’t know exist and this has helped her a lot mentally. She has now been in remission for 5 months.
    However, unfortunately where the countless chest infections, flu, colds and pneumonia have taken there toll on her, she had a CT Scan done earlier this year and unfortunately they found an unusual shadow on her Lung. She had to have a Bronchoscopy which didn’t show much , therefore she was admitted to hospital on 31st July this year and had to have an open VATS Procedure Lung Biopsy, and after weeks of waiting for the results, and having gone through major surgery we were able to sigh with relief.

    You will never guess what they found growing in her lung.

    PLATELETS !

    Thank god it wasn’t anything sinister, well None of the doctors have ever seen or heard of this happening, in other parts of the body yes, but never the Lung. It’s nothing to worry about but they need to keep an eye on this.
    She has got to now have CT Scans around every 8 months to keep an eye on this, I wonder if this has happened to anyone else with ITP ?

    Amy is now feeling much better and going back to work tomorrow.

    I am so pleased that the ITP Support Association exists as before this happened to my Daughter I had never heard of this debilitating illness and it is only through spreading the word and hearing other sufferer’s stories that you feel you are not on your own.

    So well done to everyone who copes with ITP, like my Amy sometimes you have to try different hospitals and doctors to get a better result.

    Thank You
    Carol Grange on behalf of Amy.

    Reply

    1. Hello, Carol. Thank you so much for sharing your daughter’s story. It is so great to have more stories out there for others so that people can feel more “normal” through shared experiences. I hope that Amy continues to feel better!!

      All my best,
      Frances

      Reply

  9. Thanks so much for such a positive account of living with ITP. Sometimes, when you start to read stories on line it can end up a bit of a pity party. Your post was so refreshing. thanks.

    Reply

    1. Meg, you’re right! It really can be hard to find positive accounts of ITP online. I don’t really talk about my ITP on my blog, though when I do it tends to be that I have a low count. I always try to stay away from scaremongering though, as I don’t think the condition needs to be thought of as scary.

      Had a wee look around your site, and will have a more in-depth peek when I get settled in to my new time zone (travelling for the next three weeks so life is chaotic!).

      Reply

  10. Hi Frances, Thank you for your story. It brings it all back to me. I also was diagnosed with ITP back in 1996 when I was 28. I had the lumbar puncture and was hospitalised a couple of times. Nosebleeds, bruising, mouth blisters, rashes, etc. My count, like yours, was unusual in that it went up and down rapidly. 14 one day and 60 two days later. Sometimes going up to normal range, only to be back down in the twenties the following week. I didn’t respond to steroids at all. I was told I could die any night from a brain haemmorrhage. Keeping my job and going to tri-weekly counts at St Mary’s in London was a challenge, and I had to cancel my wedding plans. However, my ITP turned out to be associated with a food intolerance to tahini (sesame paste which I ate a lot of). This bombshell took the best part of a year to isolate, but the clue was in the fluctuating counts – what was causing this? Since then I have kept well away from tahini, and my count has been in the normal range though nearer to 150 than 450. The only time it has gone below 150 was during my second pregancy, but even then, only to about 135 lowest. I sincerely wish you the very best and admire your spirit. Keep going! Karen xx

    Reply

    1. Karen, how nice to know that you were able to find a food connection to your ITP! Sadly, my ITP is not food related but is a combination of antibodies killing the suckers and a double-whammy of my marrow not producing enough in the first place. Still, I do know that certain foods or chemical exposure can lower my counts even more, so I try to avoid them – especially if I know my count is lower than normal.

      I hope you’re able to continue maintaining normal counts! What a wonderful thing that must be!!

      Reply

  11. Godspeed….my counts were predictably unstable after being diagnosed during pregnancy…for almost 10 years….then ? for 5 years they slowly decreased the drastic swings….It was Win Ro every 3 weeks….Now I bounce Between 30 and 50 and that is my normal….find your normal…mine is 2 kids and nonstop something…I may not be the mom who plays football with her kids but they are great fisherman…Life is beautiful

    Reply

    1. Hi, Jennie. Thank you so much for your comment. It sounds like you’re managing quite well – and with the “life is beautiful” attitude you’ll have an easier time! Running after the kids might mean an extra bruise or two, but I’m sure they’ll all be worth it!!

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  12. Hi Everyone I’m the new “Girl” having only being diagnosed in April this year and just having joined ITP Awareness. I am 69 years old and very lucky that I do not seem to suffer any ill effects until I get to a count of about 12 when I start bruising and feeling a bit tired. To date my treatment has been 5 day sessions of immuni globulin together with steroids initially 50mg daily currently 20mg but the effects of the infusions and tablets only last about 2 weeks then I am back at 12. I am currently being weaned off the steroids (hurrah!) and now another treatment is being looked for. Romiplostin had been suggested but as I have another auto immune condition Primary Billiary Cirrohosis that affects my liver that course of treatment is being abandoned. Last Friday when I attended hospital the Doctor asked me to consider Rituximab but I am unsure of this drug particularly when it mentions a possible side effect of dementia! I am daft enough thank you but I would be interested if anyone else on the forum has had experience of the drug and feels the benefits outweigh any disadvantages.

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  13. I am a retired 78 yr.old and was diagnosed with ITP in 2011.. My primary care physician sent me to cancer specialist when my platelet count was 16, I was feeling very tired and bruised easily. He put me on 85 mg. prednisone daily and checked platelets weekly.. As the count went up, he lowered the dosage..I stayed on the prednisone for nearly 2 years and then he decided to me on Imuran—75 mg. (twice a day) and the count went up faster until it reached 155 and stayed there or above for a couple of months. He lowered the dosage slowly until last month and took me off of all medication except for 6000 mg Vitamin D3 and a probotic. I am feeling good and anxious to go for my blood work next week. He will continue to check me monthly..

    Reply

    1. Hi, Neldeane. Thank you for your comment. It sounds like you’ve had a couple of crazy years with tests and medications. I hope that your counts stabilise and that you have a decent count next month.

      Good luck!!
      Frances

      Reply

  14. Thanks for all the comments, seems like I learn from each one. I’ve had ITP since Jan 2016, tried IVIG, steroids, Nplate and next Fri. I start Riutuxin. I’m scared of its side effects, but without something, my count drops down to 1-2 which scares me more. During all these treatments I have had to have platelets several times, to get my count up. But, I try to live my life, help care for my 94 yo Mom, and if my #s are above 20 I walk 2-3 miles a day and go to the gym and also attend an exercise class. I do check my legs and arms everyday for bruises and petechiae, but sometimes I’m down to 4 before they show up.

    Reply

    1. Hi, Brenda. Thanks for your comments! I am sorry to hear that you’ve struggled to find a treatment that works for you. As I’m sure you’re learning, everyone’s experience with ITP is different – from symptoms to treatments! I hope that the Riutuxin works for you. Please feel free to share your experiences with it, too… I’m sure others might find it useful.

      All my best,
      Frances

      Reply

  15. I was diagnosed in 1985. Throughout the years I’ve had my spleen removed and done all treatments poasible. It was just recently that my current treatment, N-Plate, stopped fully working and Drs said they can no longer give me a time limit. I hope that my efforts all these years to raise awareness don’t go unseen.
    I have an awareness page on Facebook…. Incurable Cause Companys Awareness Page. We are also currently running a Tee shirt saoes campaign to help raise funds for Platelet Disorder Support Association.
    Much love to all my fellow warriors.
    #TeamITP #StickingTogetherBecauseOurPlateletsWont #Purple4Platelets #AWARENESS

    Reply

    1. Hi, Stacia. I am sorry to hear that you have had so much trouble with finding a good treatment.

      I wonder: Have you ever tried non-treatment? Some people (including me) have found that their bodies can manage with a lower count on a regular basis. My “normal” counts are 60-80 without treatment, though sometimes they dip a bit lower than that when I am otherwise feeling healthy. The RISK is that when I get sick (even just a “common cold”) my counts drop even lower – and into single digits. In my personal experience, I have found that resting for a week or so to recover from the cold will help my counts recover (resting also means less risk of causing injury to myself).

      For example: Last year I had cold and my counts dropped to 8. I stayed home on the couch for a few days to recover and rest. Within a week, my counts were up to 30+ and within two weeks they were back to 70+. Once my counts were back to my normal, I was able to resume normal activity (including marathon running).

      I am NOT suggesting that you stop treatment without consulting your doctors. I am just suggesting that it might be something to consider WITH your doctors. It may not work for you. If you do opt to forego treatments, you’ll still want to be monitored by your doctors to ensure you can manage on a lower platelet count.

      I’ll check out your awareness group on Facebook. It’s always good to raise awareness for things like this!!

      Good luck to you!
      Frances

      Reply

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