Coping with All of the Rules

As a heart failure patient this is a article I should have written awhile ago because it is as true now as it was on day 1!

Four years into my heart failure journey, compliance with medicines, exercise, fluids, etc., (in my experience) has never gotten easy. Easier but NOT easy. The task at hand is just too damn hard...

For me, it boils down to a profound loss of control; I have so few choices now given the required adherence to medicines, diet, exercise and fluids, all while not feeling 100%. The grief is real. That being said, I have found that it gets easier for a variety of reasons, one of which is learning tools and tricks (yay for community like this!).

Here are a few things that I have learned while adjusting to life with heart failure

Keep your larger goals in mind.

You have to live for yourself. Think short and longer term. Make realistic goals that you can look forward to in the short and long term! What are you able to do that brings you joy? Get creative as well. Hiking the Rockies or planning a huge trip may not be feasible anymore, but what about starting a hobby that you have been thinking about? Taking an art class?

Be realistic.

It might make you sad, but it's the truth. For example, if you eat more sodium one day or do not take your diuretics you might have negative impacts in the coming days. Have someone who is your accountability partner, whether that is your actual partner, or a friend, who can remind you kindly that A will lead to B. It's up to you to decide if it's worth it for both that and your larger health, going back to #1.

Have alternatives planned.

There will be days your will power and discipline will be lacking. You are only human! The key is planning, so figure out something that is a little extra sodium but within reason. The idea is to have a little more but not so much that you cannot plan around it. Also, keep in mind that it does not matter whether you use your sodium allotment at once or throughout the day.

So, if you really want a higher sodium item (within reason), then you can eat accordingly the rest of the day. Also look at portion sizes if you want a smaller portion of a higher sodium item. However, this does mean that certain foods and/or in certain quantities are not within the realm of possibility, and you cannot eat foods that have sodium if you have already allocated your allotment.

Spontaneous eating is really tough with heart failure, unless it is a fruit or vegetable, which remains tough. I do not want to sugarcoat things. If you find yourself in that situation and are sad about it, a) sadness is ok and b) go back to #1.

This too shall pass.

This applies to meds - the meds might make you feel crummy but that will pass. However, if a medicine is really upsetting you, or making you feel really poorly, you should talk to your doctor about it. They may be able to help rearrange when you take your meds to lessen the side effects, or they might say try to get adjusted to it, etc. They might also say that this is the treatment plan. Good communication with your medical team is important! If they tell you to try and wait for your body to get more adjusted to it, again, play the long game and go back to those long term goals. Get back to your "why."

Take time to grieve.

Grief is not a linear process. If you need a sad day or moment, take it. Do not turn to unhealthy mechanisms to cope with it; deal with the loss directly.

Get back on the horse if you fall off, as regards to exercise.

I was given exercise guidelines, in the form of hours and intensity, by my medical team. I know it can be hard. If it is a tough day try to break it up with multiple exercise sessions in one day. Sometimes bit by bit is easier.

If you have concerns, please, again, discuss with your medical team. They might have a conversation about when to know that you have overdone it, or at least that is what my team did with me. Learn to listen to your body but push yourself to the best of your abilities and stay within medical advice! I was told that exercise is the one thing I can do to help improve my functionality.

I wrote this article because getting adjusted to heart failure was such a battle for me. It is my hope that by sharing my experiences I will help others!

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