My health has been particularly unpredictable. Changes in my health have happened practically overnight on more than one occasion. Three years ago a lung haemorrhage caused a dramatic increase in my pulmonary pressures and I went from perusing a promising career as a dancer to using a wheelchair for any kind of outing. Then, February this year, I simply woke up with worsening breathlessness that never got better. I'm now on the transplant list.
There's something about breathlessness and fatigue that once you settle into a routine of avoiding the amount of exercise that makes you feel unwell, you don't really notice improvements in your health until you're forced to do something you don't usually do and find to your surprise that you can do it without extreme breathlessness or dizziness. Worsening breathlessness is easier to notice and you suddenly have to make changes to the way you live to deal with them. Of course it's always important to do as much as you can but PH symptoms are so unpleasant it becomes impossible to push beyond a certain point. You have to make changes and this can feel like your disease is controlling your life.
Given the increasing unpredictability of my life I feel I might be able to offer some advice here.
1. Stop comparing your life to the lives of those around you.
Everyone is guilty of doing this. We crave constant reassurance that our lives are good. Imagine a healthy person exactly how they are now, but everyone else in the world is Ussain Bolt. Their health and lifestyle would be exactly the same as it is now, it's only in comparison to all the Ussain Bolts that makes it seem mediocre. It's the old the grass is always greener on the other side. But if you constantly compare your life to others you'll forget to enjoy it. Do what you can, there are always things you can do, no matter how ill you are.
There's something about breathlessness and fatigue that once you settle into a routine of avoiding the amount of exercise that makes you feel unwell, you don't really notice improvements in your health until you're forced to do something you don't usually do and find to your surprise that you can do it without extreme breathlessness or dizziness. Worsening breathlessness is easier to notice and you suddenly have to make changes to the way you live to deal with them. Of course it's always important to do as much as you can but PH symptoms are so unpleasant it becomes impossible to push beyond a certain point. You have to make changes and this can feel like your disease is controlling your life.
Given the increasing unpredictability of my life I feel I might be able to offer some advice here.
1. Stop comparing your life to the lives of those around you.
Everyone is guilty of doing this. We crave constant reassurance that our lives are good. Imagine a healthy person exactly how they are now, but everyone else in the world is Ussain Bolt. Their health and lifestyle would be exactly the same as it is now, it's only in comparison to all the Ussain Bolts that makes it seem mediocre. It's the old the grass is always greener on the other side. But if you constantly compare your life to others you'll forget to enjoy it. Do what you can, there are always things you can do, no matter how ill you are.
2. Don't compare your health now to your health in the past.
On a similar note, it's important not to lament the past. Treasure the good memories rather than becoming bitter about them. Make good memories for the future, you'll probably need them!
3. Find ways of making things feel normal.
Although your life is going to be affected by your health, it doesn't have to control it. Making small changes and making an effort to go out and do the things you used to is important. From simply having a evening meal with your friends instead of a late night out to going to see a show instead of performing in one yourself.
4. Learn to adapt. It's easier said than done but humans are designed to adapt to change. It's much more nurture that gets us stuck in our ways rather than nature. We are designed to survive and do it to the best of our ability. It's not easy but it's completely possible and your mind and body is designed to do it well.
5. Help yourself feel in control.
We are all in control of our own lives and having a disease doesn't mean you're not. Making the effort to change the way you do things rather than cutting them out of your life completely is how I maintain some kind of control over my life. There are things you can't change but there are lots of things you can, concentrate on those.
6. Get out and try something new!
So you can't do some of the things you used to but there are plenty of new things to enjoy. Go to a food festival, check out the local book stores and go to a reading of an author you've never heard of, go to a comedy show, visit the local zoo, do something you'd never have thought of doing before and take a good friend along with you. It's easy to get stuck in a routine but new things and regular outings are brilliant for maintaining your sanity. And spending time with people you love is an extra special bonus.
Hopefully these were useful. You're probably doing all these things already but this post should give you fresh drive to this summer and you can never have too much of that!
Feel free to post any advice you have for dealing with changes in your health or even dealing with a new diagnosis.
For more blog post by Sara visit her site at http://thegirlwithheartdisease.blogspot.com/2014/03/big-decisions.html
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