Mental health, self awareness and self management

Self management is described by experts as the ability to manage symptoms, treatments, lifestyle changes, and psycho-social, cultural, and spiritual consequences of health conditions, with help and support from family, community and health professionals. Effective self management requires the ability to monitor the illness, and to develop and use a variety of strategies geared towards maintaining a good quality of life.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3366425/

If it were only so simple, right?

I find that one of the biggest challenges of learning how to live with chronic illness is old habits.  And sometimes I have no real idea of how ingrained some of them are, until something goes awry.  Let me explain.

Mental health management is an important part of good self care for most people living with a chronic illness.  I know it certainly is for me.  Recognizing I had some previous issues with anxiety and sleep disruption prior to my SCAD, I started talking to my health care providers about this while I was still in intensive care.  

I'd had past issues with anxiety that could manifest into night terrors and nightmares, as often as 5-7 nights per week.  Didn't think running that much adrenaline would be good for me with a damaged heart, so in consultation with my health care team, I got started on some medication early on to help with that.  I also started journaling as an outlet for thoughts and fears that might otherwise keep me awake at night.  I practiced counting my blessings, documenting small successes, and pushing myself to become as independent as possible even when I was physically weakest. I played video games and read a lot to occupy my mind.  In short, I did "all the right things".

I had some set backs which certainly didn't help and kept my focus more on the physical aspects of my self management.  Two pulmonary embolisms and a necrotic gall bladder, all within the first 13 months after my SCADs was a lot to handle.  Then I got a preliminary diagnosis of lymphangioleiomyomatosis six months ago, which has yet to be sorted out. Then COVID19 hit all of us, in all its stressful glory.

Sometime between the end of February and the beginning of June, I started having mental health issues.  Sometimes I was awake all night, unable to "turn off" the stream of dialogue and thoughts in my brain.  Mood swings became more common and I was more volatile emotionally.  I became more easily upset by social media posts and news reports.  Sometimes messages, phone calls and even conversations with friends and family became difficult as I struggled to be a supportive friend/sibling/daughter/partner etc.  Then came the nightmares.

I know I'm in real trouble when nightmares happen, despite night time medication.  And my nightmares typically don't feature monsters or supernatural threats.  No, mine are fight for your life scenarios.  

In one, I was drowning - thrashing around, unable to get my head above the waterline to breathe, and I was quickly losing consciousness.  That one was likely triggered by news of a near drowning shared with me in a phone call.  

In another, it was a series of increasingly threatening/violent events that took place during a party in my honor.  Near the end, a guest threw a grenade into the stairwell of the house where the party was taking place.  I scrambled after it, screaming for everyone to get away and I threw myself on it.  As it went off, my partner was shaking me awake.  At first, I had no idea what might have triggered this one. I had a six month follow-up check on my internal cardiac defibrillator the day before during which they paced my heart.  Always freaks me out a bit.  Perhaps that was what did it.  I can't get used to the sensation of external forces changing my heartbeat.

I'm learning that nightmares are a symptom, the result of an unacknowledged stress or pushing myself past reasonable limits now that I'm living with congestive heart failure and a damaged heart.  My subconscious is desperately trying to get my attention at night because I'm not willing to face up to something in the daylight.  

For me, the hardest part of self management has been self awareness.  In this case it's having to face the fact that I am not as able to weather certain types of stress as I did before, and having to acknowledge this may mean setting new expectations or parameters with people I love.  While I may want to be the same friend/sibling/daughter/etc. I've always been, I'm learning that may not always be possible anymore; at least, not without a cost to my own well-being.

Problem is, I hate feeling like I'm letting people down.  I can't stand feeling "weak". I don't have a lot of patience with self pity.  I'd rather, wipe my nose, get back on my feet and soldier on.  I don't see myself as a quitter. But as a wise woman (my sister) once told me, while our parents didn't raise us to be quitters, there are times when quitting, or stopping, really is the only sensible course of action.  

There is no instruction booklet on how to navigate these types of challenges.  You don't know how others will feel as you try to explain what is happening and how this impacts your relationships with them.  And this sort of relationship communication is challenging even without the backdrop of chronic illness.  That's why relationship counselling is a thing, right? These are the challenges that make learning how to live within a 1800 mg sodium limit seem like a breeze.

But there really is no getting away from it.  When you have a chronic illness, you already have demands on your physical and emotional well-being.  Ignoring mental health issues will always come at a price, one we can ill afford to pay.

So, what do you do?  I say, the best you can, and you have to make your mental health needs a priority.  Practice having those conversations with those you love.  Let them know you love them, that they haven't "done" anything to you.  Enlist them as allies in helping you look after yourself and extend the same compassion to them.

For instance, my siblings and I don't make assumptions about we are "up for" talking about.  Either of us has permission to say "You know, I really don't think I'm up for <insert topic> today.  Can we talk about something else?"  And we have agreed to respond positively, and to change the subject.  

It may seem like a small thing, but it is, in fact, huge when applied with unconditional love.  It demonstrates care and respect for each other.  And it recognizes that our relationship is dynamic and what we can expect from each other at any point in time may change.

I like to think that while a conversation like this might have started because of my self management needs as a person living with chronic illness, overtime, it will be as beneficial to those I love.  I also hope that, over time, the self awareness I need to be successful in self managing my chronic condition, will also be strengthened.

I'm learning to be kinder to myself, to let go of old habits, ways of thinking and expectations.  As a result, I am happier and more content than at any other point in my life.  And the irony that chronic disease has helped me get here is staggering to me.  

Even with all the big changes it has brought, all the pain and uncertainty, the past several years have shown me what is truly important in my life.  And for that, I am truly grateful.