My Secret ITP (Bad) Habits

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp, blood disorder

After living with ITP for a long time, I have developed some great habits.  I am healthier and more physically aware of my mind and body than I have ever been in my life.  In many ways I have been through all those amazing changes people rant about online after they get diagnosed with an autoimmune disease.  

I exercise, I drink plenty of water, I de stress, I pretend to mediate, I go to yoga once a week and take care of my body.  After repetition, these changes have become habits.  That is what happens over time, actions become habits.

Most of my new habits are wonderful.  A few of them are not.  Nobody is perfect right.  Along the way, through repetition, I have also picked up a few bad habits.  This are my habits I need to confess.

1. I Miss my doctor’s appointments – Doctors appointments used to be a very big deal.   I remember when I was little, a doctors appointment was a reason to take a day off school.  Doctors appointments used to be rare and important.  What I have found is, the more doctor’s appointments you have, the more common and unimportant they become.  This is especially important if every time you go to see a doctor they same the same thing to you.  Sometimes I book them months in advance and by the time the appointment comes around – well I am actually busy.

2. … And sometimes I don’t cancel – I don’t do this on purpose.  I don’t want my doctors to hate me.  I just sometimes forget to cancel.  And other times it is impossible to cancel.  When I am calling certain clinic’s within the hospital it is impossible to get through.  I get sent round in circles for 30 mins and then I just hang up and go about my business.

3. I change my medication sometimes –After being on a high dose of Prednisone for a while, I do my own experiments with medication levels.  Sometimes I feel like I need to be on a lower dose than I am.  When I see my medication going into my body every day, I am startled by how much I take.

I have a different connection to my medication than my doctors do.  They do not see the tablets in their hand every single day, or taste it in the back of their throat for the next 30 minutes.  Because of this, I feel differently to my Doctors about the amount I take.  Sometimes, I perform my own experiments, over a few weeks without telling my Haematologist, just to see what the count is.

Blood disease itp, itp platelet disease, itp autoimmune disease4. I don’t take my medication every day – I know, there is no excuse for this.  Most of the time I forget, but other times I just don’t take it.  It is part of my plan to slowly cut back on taking prescription medications.  I am petrified of becoming completely dependent on medication and running the risk of adrenal exhaustion, medication induced diabetes and all the other crazy risks associated with long term steroid use.

5. I don’t spend enough money on alternative therapies – …And I feel bad about this.  I know I should be putting more time and effort into alternative complimentary medicine such as yoga and chinese herbs but it is not always my priority.  This is a bad habit of mine I am trying to break.

It is hard because Alternative Therapies are not as funded and financially supported as mainstream health options.

6. I don’t rest my arm after getting a blood test – After a blood test I get straight back into my life.  The other day I had a blood test during my lunch break at work. 10 minutes later I was back at work, hanging out and forgetting all about my arm.

7.  Sometimes, I feel sorry for myself – This is perhaps the worst habit to get into.  Sometimes I find myself being very negative and complaining all the time about life get ‘hard’ and just generally being a big baby.  This is the habit I am most keen to break.

8. I don’t keep my own medical records or document my Platelets – If I concentrate, I can kind of remember what my last two counts were, but I wish I had a record of all my results over the last 7 years.  I wish I had kept all the information.  I regret not collecting my blood counts from when I was first diagnosed.  Having all my platelet results from the last 7 years would be a very valuable resource to have.  I have kept track of the last couple of blood tests using an app on my smartphone made for people with ITP.  But I forget all the time to input my results.

9. I like wine – Especially when my platelets are low.  When I get bad news from the doctor, I still fall into that little habit where I turn to that old sweet crutch – Alcohol.  I confess, I like drinking wine, and I still do.  To change this habit I actually have to replace this comfort food with something else.  I am not a cold turkey kind of gal.  I should be enjoying a glass of wine because it is delicious, not because of my sad reaction to crappy platelet news.

10. I share too many secrets online – Only joking!

It is funny how we know what we should be doing, but still find it hard.  I don’t even listen to my own advice.  Reading through old articles I have written, I remind myself of all the good habits I have made, but I still focus on the mistake I make.  I know in my mind what I should be doing, but applying that every day and getting into good habits is really hard.

Have you picked up any bad habits since you were diagnosed with ITP?  If so, then please let us know if you have also figured out how to break the habit?

 

 

 

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

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