Meg Louise

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Welcome to Meg's Story

We like to ask all sorts of questions here, from the diagnosis story, to how patients with ITP sleep.  How they deal with stress and how they feel when their platelets are falling, appetite, mood and how their life has changed since ITP – Funniest or worst injury and how they manage ‘being sick’…  Every ITP story is different.  Enjoy.

 A little bit about me…

At the time when I was diagnosed I was working in hospitality in Sydney.  Since then I have studied, become an Art Teacher, taught in High Schools, left teaching and am now working as a Freelance and Creative writer.  (See my very messy office above)  I now live with my partner on the south coast of NSW.

I was diagnosed… 
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During a trip to NZ in 2010

With itp in January 2008, after I came home to Sydney from a three month trip over sea.  Long before I was diagnosed I knew there was something wrong with me.  People would comment on bruises on my arms and say that I looked and seemed quite tired.  A retired nurse was particularly persistent that I go to a doctor but I did not want anyone telling me I couldn’t travel.  I had waited and saved for so long to go around the world, that I thought – ‘What ever is wrong, I will deal with it when I get home.’ 

I was so lucky that nothing went wrong while I was traveling.  In Sydney I went to my doctor for a blood test to see if I was low in iron or something.  When the results were back he called me at home and sent me straight to emergency.  I was so scared.   I was admitted to the hematology ward and spent a sleepless night looking out the window.  

I was initially treated with 75 milligrams of Prednisone and responded really well to the treatment.  However, over 4 years my tolerance to the drug has increased and I am less and less responsive to the therapy.  

How I was feeling before I was diagnosed…

I slept a lot.  I have always slept a lot – But this was even more than usual.  I was very tired all the time and when I look back on it, I was also pretty sad.  I thought perhaps it was just the come down after an amazing trip.  I probably ignored a lot of my symptoms for a long time because deep down I knew that something was wrong and I was not ready for the bad news.

When my platelets drop…

Everything else in my life tends to drop too.  I am not always right about what my count will be, but often when I am sad, sluggish, stressed or tired – I tend to have a pretty low count.  When I am very low, I feel it in my wrists and neck, my body seems to ache a lot.  I don’t recover well from exercise, I want to stay in bed all day and I struggle to motivate myself.  

When I have the Flu...

My platelets are quite good!   I am not sure if this is true or not, but I think when I have an actual illness to fight, my platelets are given a reprieve for a few days.  As I write this I have a mild cold and my platelet count is up over 50!  

Stress is…

A hard one.  I wonder which comes first – The Stress or The Drop.

Am I stressed because my platelets are low and my body is rundown – OR – is my body rundown and my platelets low because I am stressed?  What ever it is, stress is defiantly something that I need to learn how to manage better.  Lots of people tell me that I should learn how to meditate but personally I find it boring (I know that is not what you’re meant to say).   I prefer dancing as a means to clear and focus my mind & body.  Also I love taking Rescue Remedy – I have a whole bottle ready for my wedding day.  

Heat…

I am always the last person to put on a jumper.  Lots of my friends always comment that I never get cold.  I need ice in my water and keep my coffee in the fridge.

When I went to see a Chinese Herbalist in Sydney, he told me that I have a fire within me and that I need to manage the heat in my body before I could start to heal.  I wondered if he was talking about my immune system being in over drive?  He was right though, I am always hot.

Sleep…

I am not a morning person.  If I could, I would stay up all night, and never be out of bed before 10 am.  When I do get up before 10, I find that I don’t ever get much done till at least 11 am anyway.  I sleep very heavily and rarely have trouble falling to sleep.  I think I also sleep quite hot, which leads to very vivid and often violent dreams.  I tend to need about 9 to 10 hours a night.  

Exercise…

I often take a little while to recover from exercise.  Ballet, Yoga and Walking are my favourite at the moment but as winter comes, I like to read and drink coffee on my exercise bike in the lounge room.  Doing lots of different types of exercise is the best way I have found, to make sure I don’t over work one part of my body.

Using a foam roller and rolling has helped a lot – My partner introduced rolling into our home after his physio recommended it.  It is like giving yourself a massage.

Appetite…

I don’t think I have much to contribute here, my appetite has always been pretty constant and doesn’t seem to change depending on my platelet count.

Moods…

My moods are strange – I once read that blood platelets are connected to serotonin

Serotonin secreted from the enterochromaffin cells eventually finds its way out of tissues into the blood. There, it is actively taken up by blood platelets, which store it. When the platelets bind to a clot, they release serotonin, where it serves as a vasoconstrictor and helps to regulate hemostasis and blood clotting. Serotonin also is a growth factor for some types of cells, which may give it a role in wound healing. 

This would make sense that my platelets and moods are linked.  As my platelets fall, everything else tends to get very difficult and sadder and less joyful. 

How has my life changed since my diagnosis?

Immediately after I was diagnosed everything changed in my life.  I think that has settled down now.  

I panicked when I first found out I had ITP and thought that I would never be able to travel again.  I was scared of busy stair cases and thought I would die crossing the road.  I was scared of heaps of stuff and thought I had to tell every one about my disorder. 

Thailand 2013
Thailand 2013

I have since found a travel insurer who will cover me, despite being on immune suppressants and have continued to travel with ITP.  

I am certainly more careful with myself, healthier and have a far better lifestyle than I used too (though I still drink and stay out too late).   The one big change that ITP has made for me, is about future plans and perhaps how this will complicate having children – when and if we are ready.

I also included blood donations on our wedding registry – Which I probably would not have done before having ITP. 

Worst / Funniest injury…

A few times since I was diagnosed I have convinced myself that I was going to die.  The first was after my first plane flight since being diagnosed.  I had a pain in my leg and lay awake thinking I had a DVT and was about to have a stroke.  Another time, after hitting the back of my skull against the open freezer door.  I told my partner that my time had come and lay down on the carpet in the lounge room to slowly die.  He laughed, gave me a bag of peas and we played scrabble till the pain went away – I did not die…  

Dealing with ‘being sick’…

As much as possible, I try and approach it with humour and joy.  Leona Lewis’ “Bleeding in Love” is my theme song and lots of people now joke with me about where I get all my bruises from.  

I am still open to a cure and expect that this time will end – I have not accepted ‘sickness’ as a perminant state in my life.  Hopefully it will be gone before I try and have children.  I have a medi alert in my phone in case of an emergency – it has all my information in it and emergency contact numbers and details of my medications.   

A little more… 

The other day I saw a surfer with a tattoo on his chest that said -Type 2 Diabetes.  I realised as I was looking at that tattoo, that I still believe that ITP is not a forever disorder, and that we dont need to get it tattooed onto our bodies.

You can contribute your story HERE – We would love to hear from you. 

 

by Meg

Meghan Brewster is a writer and blogger. She is an ITP patient and launched ITP&Me in 2011. She is a coffee lover and a try hard dancer. @meghan_brewster

3 thoughts on “Meg Louise

  1. Pingback: Courage, perseverance, triumph: the voices of ITP patients - precisioneffect

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