One of the worst feelings you can experience as a chronically ill person is invalidation. It’s not necessarily that others don’t believe you (although that is also a tremendous problem and a discussion for another time), but that they either don’t see or don’t understand how much your illness(es) impact your daily life. Especially when mental health plays a role in your battles.
And what makes it even more frustrating? When that invalidation comes from healthcare professionals. When, to their eyes, you “don’t look sick” enough or you don’t have “enough” chronic illnesses or you’re “too young” (no matter how thick your medical chart) to warrant feeling depressed.
I was diagnosed with postural orthostatic tachycardia syndrome (POTS) about four months ago. (Is that all? Really? *checks calendar* Blast it all. This has been the longest four months of my life.)
In a stroke of luck, my diagnosis came only a month or so after the onset of symptoms, which I inadvertently described some of here. But part of me wonders if this wasn’t the beginning, albeit still only a few weeks before things really took a more permanent turn for the worse. But since I knew what I was looking for, having heard of POTS before and being familiar with the symptoms, I went straight for the best. In another stroke of luck, the healthcare system where I receive all my care just so happens to be an autonomic center, with the most cutting edge testing available (one test I had is only performed at this center.) My cardiologist is none other than the medical director of the syncope center. So with him taking the reins, I got my diagnosis in record time.
“Things we lost to the flame
Things we’ll never see again
All that we’ve amassed
Sits before us, shattered into ash…”
Things We Lost in the Fire (Bastille)
As Esther Smith said in her excellent book, When Chronic Pain and Illness Take Everything Away, “Grief is the process by which we actively release all that we feel, question, and remember at the feet of God and the people He has placed in our lives.”
At the end of the second chapter, she poses some questions that have me wrestling with my thoughts, emotions, and feelings towards God. Questioning God isn’t a bad thing. In fact, He encourages us to come to Him with our questions, fears, or doubts. If you’ve ever read Psalms, you know this to be true!
As part of my grief process, I am going to share my answers to the questions, as you all are the people God has placed in my life. I assume the intention of that is to find help through grief from a different perspective than God’s. Continue reading “Things We Lost in the Fire”
I’m in denial about something. Although it’s not something you’d think any person would be in denial about.
Obviously, I’m unwell. POTS has taken over my life in a bad way. I’m trying to get better, but the prognosis isn’t all that great. I may never fully recover, but I’m not in denial about it. That’s just a reality I need to accept.
I’m awake since I feel a bit sick right now. Nausea has become a fairly common occurrence during my days now, likely from all the salt tablets I’m ingesting…and all the food I’m not ingesting. I really don’t care, either.
I haven’t done one of these in awhile. My last one was in December, I believe. Even in two short months, my life has changed a great deal. Not for the better, unfortunately. And since I’m having some painsomnia along with my general refusal to sleep at night for the most part anymore, I guess I may as well talk about it to some more sympathetic ears than I’ve been getting the past few days.
I lost my job last week. I understand why, but that doesn’t make it any easier to bear. My FMLA ran out last June, after which point my job was unprotected; they could have gotten rid of me then. Instead, they gave me as much time as they could for me to get well enough to return to work, which I failed to do twice, once in October, and again in January, when I was diagnosed with POTS. (Here’s a bit of what a day in my life looks like now thanks to POTS, except I pretty much stay in bed now.)
But anyway, now it’s prime recruiting season at the hospital and I’m not naive enough to think they would keep me any longer. They’d rather replace me with a new residency graduate who has some clinical knowledge, but has absolutely no idea how to actually be a pharmacist.
Although I don’t feel quite as bad sometimes when I think about what a literal revolving door my specific tiny department within an enormous department is. And it is a tiny department, with something like a dozen pharmacists total for a 24/7 operation. But since 2010, the year I started working there, I’m 99% certain, if my list is correct, that I am the 20th pharmacist to leave. In seven years.
Yet my emotions are still very raw. I keep crying periodically. Ok fine, I cry a lot. I want to scream and throw things and then go to bed and never wake up. I’m back in what I call my depression hole; I have periods where I just won’t talk and will only communicate via head movements or shrugs because I feel if I open my mouth to speak, I’ll fall apart. I took the picture on the right immediately after I found out so I’ll always remember how much it hurt.
So now the big question is, what do I do with myself now? Honestly, if I ever get well, I don’t know that I have the intention of reapplying in the future or to ever practice pharmacy again. What a waste of six years of education. I was never a good pharmacist in my opinion anyway.
But David and I had a heart to heart Friday night between us and God. We came to the conclusion that I’m basically going to start my life all over again. I’ve been through so much in the past year (or even really the past four years starting with my celiac disease diagnosis, then the endometriosis…) Between all my diagnoses, my surgeries, trying to get better on a deadline when my body wasn’t ready, being stressed out by that, getting worse, and so on, it’s finally time to take my foot off the accelerator. I’m setting intentional goals that I (hope) I am capable of and can work towards.
Not thinking about work or a return date or ever going back there ever again.
Do my cardiac rehab to the best of my ability in an effort to improve my POTS, and therefore my quality of life.
Do things I want to do that will make me happy.
Studying the Word
Listening to music
Take baby steps towards normalizing my life.
David will encourage me and I will encourage him.
Focus a bit on getting the house cleaned up.
So, really, living my life the way I want to, with as little stress as possible to maybe help promote faster healing. No deadlines.
A new me.
I started life over again in 2004 when I started pharmacy school, leaving behind my old life of dance and musical theater.
I started life over again in 2010 when I graduated from pharmacy school, got married, moved, passed my boards, and started my career.
And I’m starting my life over again in 2017 when my health is in shambles and my pharmacy career is over.
We’ll see where the road takes me. But after all I’ve been through, I can only hope it’ll be to a happier place.