How do you Talk about Your Illness?

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How do you talk about your illness? Which words do you use to talk about your illness? What is your tone when you speak about it? How do you stand while talking about your illness and what about your body language? How do you describe your illness to your doctor, friends or your family?

For me, there is nothing worse than someone who bangs on and on about their illness. It’s exhausting. Especially when there is nothing you can do to help them and it doesn’t seem to be going away.

There is only so much of this I can listen to before I want to back away and never ask them how they are ever again. It’s unnecessary to go on and on like this. It doesn’t help anything.

Everyone is fighting something. Everyone has something huge to deal with in their life.

As a chronically ill person, I choose to discuss my illness as little as possible. I don’t want it to leak into my life. I don’t want it to be all they see. I don’t want it to get me down.

The more I think about it, the more I can’t ignore the impact of my speech upon my attitude. How I talk about my illness directly impacts how I feel towards my illness.

So this is my New Years Resolution when I need to discuss my illness, I will speak positively about ITP for a whole year. Continue reading

Feeling Grateful

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Giving thanks, or to put it another way, being nice first.

For a long time, I never realized just how important Thankfulness (is that a word?) and Gratefulness (that has got to be a word) is to Happiness (definitely a word).

For a long time, my default was to be in a bad mood, and then wait until things cheered me up. If I knew I had to get a blood test in the afternoon, I would waste an entire morning feeling sorry for myself in preparation for the afternoon.

I would head to the doctor too early, then waste too much time sitting around for no reason. Afterward, feeling sore and sorry for myself I would grumble all the way home, poor me… blah blah blah – my life sucks, needles are painful and intrusive and make me sad. Having ITP is shit… Blah blah blah…

There was no gain from being like this. I didn’t gain anything positive from acting like this. My blood count never changed on account of how much I worried about it, or grumbled about the doctor, or felt sad and sorry for myself. The tests never came less frequently the more I complained to my friends about how I was forced to waste my days off at the doctors.

It was so destructive to my happiness, worrying about the results and feeling anxious all morning. I was frustrated that I had to go to the doctor (again) and felt like I was wasting my life.

I was the one that was suffering, feeling flat and sad. And it was my own fault. I was doing nothing to help myself feel better. I was focusing on all the crap stuff.

Taking the time, every day to be grateful and thankful for the good things in your life instantly changes your mood. It makes you smile, it makes you think and it helps to put things into perspective. Just try and think of ten things right now that you can be thankful for today.

Here is my list.

  1. ITP being positive, tp, itp bruises, bruising easily, hide a bruise, Bruises, Bruise, itp, low platelet count,I am so grateful that Kate came to visit with cheese.
  2. I’m thankful for the cheap tray of mangos I bought a few days ago.
  3. I am thankful the weather is hot and nice.
  4. I am so luck to have a mothers group full of amazing, normal, positive and hilarious ladies…
  5. That the coffee shop at the end of my street is now open late.
  6. I am grateful that the dress I am wearing to a friend’s wedding will hide the bruises on the top of my knee.
  7. I’m so happy that my friend Susie has a beautiful new healthy baby boy!
  8. I’m grateful that my body responds to Prednisone.
  9. I feel so happy to have a doctor that cares about my health and is honest and kind with her advice.
  10. I am grateful to live in Australia and have access to a variety of treatment options.
  11. I am grateful that the bruise on my arm has only come up half the size I expected.

Ok, so that was 11! See how easy it is once you get on a roll…

This is nothing groundbreaking.  Gratitude has been always been seen as a way to get your mood back on track. This article is simply a reminder.  And I think we all need reminding every now and again.

It is easy to get carried away with the negative aspects of a Chronic illness.

This week, try and fight it – with a bit of love and thanks.

 

A Confession From Me; Why I Completely Freaked Out

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This morning I had a freak out.  Not a regular kind of ITP freak out, but a full blown monster freakout.

I thought my blood disorder was going really well.  I had been stable and healthy and happy for a long time. I felt like I was in a good place and that I could relax for a little while.  This is probably what made my freak out even worse!  Here’s what happened.

I woke up this morning, I went to the bathroom and I looked in the mirror. In the corner of my right eye was a blown blood vessel, bright and fresh, staining the corner of my eye with blood.

I did not rationally tell myself that people get blown blood vessels in their eye all the time, from sneezing, bending over, coughing, or for no apparent reason.  I did not behave like a person who has lived with ITP for more than 8 years.

I did not behave like a person who started a website about ITP, to help hundreds of patients a month live calmly and peacefully with their ITP.  Oh No!

Instead, I completely freaked out.  I told myself I was going to die; that overnight I’d been bleeding into my brain, I was convinced platelet count was below 10 and there was nothing that could be done to save my poor life.  I was a goner!

I stood there, staring at my bleeding eye.

My hair was in a big pile on my head, my pajamas were all crumpled and a little smelly.  In the strange dawn light I was sure it was a waste of time going to the hospital.  It seemed like a waste of energy.

I did not want to die in a hospital.  Better to die calmly in my own bed, I told myself.  So I went back into my bedroom and jumped into bed with my husband to die calmly in his arms.  (I kid you not this is actually what I was thinking!!)

As soon as I saw him, I immediately knew I’d over reacted.  My platelet count was 57 last week.  I didn’t have a headache, I didn’t feel sick, I wasn’t going to die.  I went back to the bathroom and looked at my eye again.

The dot of blood was tiny.  I mean tiny!  I felt foolish, paranoid and embarrassed.

So why am I telling you this?

Because living with ITP can be scary – even after 8 years.

When Things Go Well, Do You Put it Down to Luck?

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The other day I was chatting with a friend about how well everything was going with the ITP pregnancy.  When I told her that my platelet count was high, my baby was happy and healthy, my doctors were pleased, and that I felt wonderful, I instantly added on the end – I am really lucky!  She stopped me right there.

She stopped me right there.

It was a good friend of mine who pointed out that it was not luck at all!  She drew my attention to everything my husband and I have done to make sure our pregnancy went well.

  • We found the best doctors available to us and moved 6.5 hours from our home to see them.
  • We traveled back and forth between Sydney and the South Coast to attend appointments including flying while morning sick and pregnant.
  • I was eating healthy, paying attention to diet, nutrition and cravings.
  • I researched all my medications, learnt about their side effects and took measures to combat them.
  • I read up on everything I needed to know about high-risk pregnancies.
  • We went to parent information classes.
  • I sought advice and support from people around me.
  • I pursued alternative health remedies, took herbs and supplements, drank teas, and received remedial massage.
  • I went to a KINESIOLOGIST (All though truth be told, she came to me)
  • …and a CHIROPRACTOR.
  • I walked every day.
  • I went to ballet
  • …and did yoga regularly,
  • and I was meditating to stay healthy and positive.

And yet, I am so quick to tell people how ‘lucky’ I am to be happy and healthy.

Luck would be everything going well if I did nothing to help myself.  Luck would be a positive outcome despite making no effort at all.  Luck is about success or failure brought about by chance rather than through one’s own actions.

Why am I so reluctant to say “Yeah, I fuck’en did this!”?

I did a little research on the matter and discovered that this is a trend I couldn’t ignore.  It turns out, as a group, women are more likely to attribute their success to luck and to blame themselves for their failures.  I did a lot of reading.  It is a real thing.

From the book SEX DIFFERENCES in Depression by Susan Nolen-Hoeksema, several studies have shown that ‘women tend to make more external attributions… attributing outcomes to luck or task difficulty.’  

Dr. Jacqueline Hornor Plumez also writes in her book, THAT BITCH IN YOUR HEAD, that when women fail, their inner voice says, “Dummy – You blew it,” but when they succeed, it says, ” Wow! You were lucky!”  Men tend to think the opposite: When they fail, men are statistically more likely to blame the situation or someone else but when they succeed, men take credt for being smart and competent.

When you attribute things in your life to luck, you are less likely to take credit for your success.  I need to stop telling myself that when I am unwell, I deserve it and when I am healthy – I am lucky.

When I first wrote this article I had no idea how my pregnancy was going to turn out.  Now I know that everything was more amazing than I could have hoped for.  While there were a few moments of pure luck (Having ana amazing midwife on duty when we arrived and being placed in the best room on the ward) mostly it came down to being fit, prepared, healthy, positive, determined, strong, educated, informed, and open to change – It certainly wasn’t because of LUCK!

Four Years of ITP & Me

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It’s time to celebrate 4 years of ITP & Me.

A year ago today, I wrote a blog post about THREE YEARS of ITP & Me.  At the time, my hopes for the future were that I would be able to have kids with my ITP and write about the whole process.

That dream has now come true, as I am sure all heard. Our son was born just a few weeks ago with a wonderful platelet count and not a sign of my antibodies staying in his system.

Now my hopes for the future are to change the perception of ITP around pregnancy and birth.  During my pregnancy, it became clear that there is a strong culture if fear around ITP and pregnancy.

I’m now working on a new book this year which should be out in September 2017.

I’m so grateful to all the EMAILS and messages received through itp.and.me.g@gmail.com and via the comments on the website.  Now more than 10 000 people come to ITP & Me a month looking for information, help, advice and tips for living with ITP.

Thank you to everyone who has SHARED THEIR STORY with us here.

Cheers, Meg

Just Breathe

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Calm Breathing

Controlled breathing can cause physiological changes that include lowered blood pressure and heart rate, a reduced levels of stress hormones in the blood, reduced lactic acid build-up in muscle tissue, balanced levels of oxygen and carbon dioxide in the blood, improved immune system functioning, increased physical energy and an increase in feelings of calm and wellbeing.

Breathing as Meditation

Breathing is not a conscious process, it does not need thought and we do not decide to breathe.  It moves in cycles, inhalation, exhalation, one action triggers the other.

It is so subtle that it is easily ignored.  In fact, it is a blessing that we can ignore it, for it would take most of our thought to remember to keep breathing, without this in tune process.  But when you tune into it, and breathe on purpose, with consciousness, it can be the perfect focus for meditation.

The classic image of meditation is a young healthy person seated cross-legged on a mat in a magical environment, arms on their knees, eyes closed and their mind is empty.  This is a misconception.  Meditation does not need to be about sitting for hours emptying your mind.  It can be as simple as focusing on your breath.

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