In the Depths of My Sickness with Lupus (and Learning to Put My Health First).

I’ve been absent from this blog since my last post in early June, although my posting frequency had been slowing down since the beginning of the year.  I didn’t choose this three month blogging hiatus.  In fact, I was more or less dragged away – down into the depths of my sickness with lupus.  I was too sick to put even the shortest of blog posts together, and for a while I had no idea when I would be well enough to return.

Although I’ve been sick for nearly two years – since that fateful day in Munich during November 2015 – I received a new name for my sickness this past January: lupus.  Around the same time of my diagnosis, I began a descent into a deeper level of sickness than I’ve ever known before.  It was a gradual descent at first, but eventually I was plummeting out of control until I became practically bedridden in April.  I’m honestly not sure how I managed to hold it together enough to write the last several blog entries.

In this post, I’m going to share with you what it was like to be in the depths of my sickness with lupus for most of this year.  I’ll paint a picture of what it was like to be incredibly, chronically ill.  Then, I’ll share how I managed to claw my way out of it and share hope for others that may also be in this situation.

In the Depths of My Sickness with Lupus.

In the depths of my sickness, I never imagined that I would achieve any semblance of a normal life again.  All I could see was pain stretching out endlessly into the distance.  At times my strength of will faltered when I faced that long road of pain.  My husband would find me weeping and I would tell him, “I can’t do this anymore.”  I wasn’t suicidal – but I wasn’t that far from it, either.

In the depths of my sickness, I had no stamina.  My disease was so overactive that it completely depleted my energy reserves.  I got tired just from showering.  Going to a doctor’s appointment would wipe me out for days.  I did not do anything that wasn’t absolutely necessary, and I even skipped some of those absolutely necessary things.

In the depths of my sickness, my body was riddled with infections.  My immune system was busy attacking the healthy parts of me instead of fighting against a real threat.  I suffered a particularly traumatizing ear infection in February, which ruptured my eardrum and caused me so much pain that our neighbors actually called the cops (fearing domestic abuse).

In the depths of my sickness, I sat in a scalding hot shower and sobbed in pain.  I took the maximum allowable dose of opioids that my doctor had prescribed to me (and ignored the demonizing articles that my healthy friends were sharing online about opioid use).  I laid on my heating pad until the plastic label melted.  I became delirious.  Nonsensical.  At one point, I even wished I had a more fatal disease because at least that meant that my suffering would have an identifiable end.

In the depths of my sickness, I could rarely use my hands.  They were swollen, painful, practically useless extremities.  A simple attempt to reposition my pillow would cause me to grimace in pain.  I stopped trying to open jars, water bottles, pill containers, etc.  Anything that required pressure on my fingers was beyond my ability.

In the depths of my sickness, I counted down the hours until I could go to bed.  Not because sleep was blissful, but because I couldn’t face the day anymore.  Even fitful sleep, propelled along by muscle relaxants, was better than the reality of my days.

In the depths of my sickness, I felt abandoned by almost everyone.  The only person who was truly there for me was my husband.  My suffering seemed like it would never end, and most of the people that I expected to support me in the lowest lows of my life were nowhere to be seen.  I was desperately in need of help and I would have given almost anything to have a friend simply sit and be with me in the depths of my sickness.

In the depths of my sickness, I was completely overwhelmed.  I had very little control over my life; I was barely able to get out of bed and bathe on my own.  I watched TV constantly, not because I particularly enjoyed doing so, but because there wasn’t much else I was capable of doing.  I could not withstand being alone with my pain.  I couldn’t look it in the face for more than a few minutes; it was too much.

In the depths of my sickness, my husband was completely overwhelmed, too.  Since I couldn’t cook, or clean, or really do anything useful, he had to take care of every single thing.  The strain of working full time and providing for all my physical needs became far too much for him frequently.  It would have been far too much for anyone.  Unfortunately, not many people were there to shoulder his burden with him in his time of need, either.

In the depths of my sickness, I lost myself.  My personality became obscured by pain.  Who I was buckled underneath the weight of illness.  I lost so much of myself for so long that I forgot what it was like to really be me.

In the depths of my sickness, I experienced a lot of blood loss in a part of my body that should not bleed.  My illness and inflammation were out of control.  I had to have an outpatient procedure that terrified me so much that I sobbed as I was wheeled in to the anesthesiologist.

In the depths of my sickness, my blood pressure rose concerningly from the stress of being in so much pain.  I could not control my anxiety levels and the thought of leaving our apartment, even for a quick bite to eat, could make me collapse in tears.  It was unbelievably challenging to put on clothes, sit up straight, and endure the presence of people who had no idea how sick I was.

My husband is modeling my blood pressure monitor in this photo, which is why there is a good pressure reading.

In the depths of my sickness, I lost all sense of time.  There was the time when I was in a lot of pain, and the time when I was in slightly less pain.  There was the time when I slept (poorly).  There was the time when my husband brought me food.  But there were not coherent days and hours.

In the depths of my illness, I made people uncomfortable.  My life was sad, my illness permanent.  I wasn’t inspirational and a “Get Well” card wasn’t appropriate for my chronic situation.  I was living out a scenario that most people are terribly afraid of and do not want to confront.

In the depths of my sickness, I could almost never think clearly.  Reading an entire email in one go was an accomplishment.  Words got into a wreck trying to make their way out of my mouth.  Writing was certainly out of the question, and so were intelligible conversations.  After weeks of not being able to, I stopped even trying to think straight.

In the depths of my sickness, I was exhausted all the time.  I would rest on the couch for hours and I would still be completely exhausted.  It was a deep in my bones type of physical exhaustion accentuated by heavy mental fatigue.

In the depths of my sickness, people had the gall to ask me to do things for them.  I was bewildered when this happened; I didn’t know how to respond to their ignorance or lack of interest in what was going on in my life.  I wasn’t in a position to help myself, much less other people, so most of the time I just didn’t respond to these requests at all.

Related: The Unfortunate Realities of Life with Chronic Illness.

In the depths of my sickness, I was not a nice person to be around.  Being in constant pain made me very bitter and angry.  I possessed little patience and I lashed out at my husband more times than I’d like to acknowledge.

In the depths of my sickness, I was rarely able to drive.  I developed chronic, debilitating dry eye in May, which became so bad that I couldn’t drive while using my air conditioner (in 90 degree weather).  My brain fog, high pain levels, and fatigue also made it difficult to focus and drive safely, so I would arrive at my doctors appointments sweaty, confused, and exhausted.

In the depths of my sickness, I was taking up to 10 pills a day.  I no longer cared about their side effects – I was too desperate.  My apprehension about taking certain levels or kinds of medications was nothing compared to my need for relief.

(In this photo lupus is spelled out with plaquenil – an anti-malarial drug often used to treat lupus.)

In the depths of my sickness, no financial cost seemed too high if a product or service would help me to feel better.  I would have paid almost any price to escape the pain, even just for a little while.

In the depths of my sickness, I felt inescapably betrayed by my own body.  My body – the thing that makes me, me – was attacking itself; I could not walk away from it like I could leave a demeaning job, an unfaithful lover, or a cruel friendship.

In the depths of my sickness, I was not at fault.  I did not cause my lupus.  I did not wreck my body.  I could not have prevented my sickness.

In the depths of my sickness, I felt absolutely hopeless.  I couldn’t see how it would ever get better.  I couldn’t understand why my doctors didn’t have more ideas, or why recovery wasn’t within my reach.

In the depths of my sickness, I felt suffocated by my disease.  It had taken away everything that was supposed to be mine: my time, my energy, my strength, my creativity, my passion, and my mental stability.

In the depths of my sickness, I was dirty, tired, hungry, and miserable.  There was nothing pretty about my life.  Although I have experienced traumatic circumstances before (namely, my father’s slow death), nothing in my life came close to what I went through at my sickest.

In the depths of my sickness, I never could have written this post.  How ironic is that?  Occasionally I would compose a few lines in my head, but then I would get too tired, too confused, or my pain level would rise too much to continue.

Learning to Put My Health First.

Although I had little control over the progression of my lupus – in fact, I was rather unaware of my disease for the first year and a half of my sickness – I still had a lot to learn about putting my health first.  Once I no longer had the energy or focus to work on this blog, I realized that I had been putting this blog before my health for quite some time.  If I only had one good hour a day then I was determined to spend that hour writing.  I was happily addicted to working on this blog and, as I’ve mentioned before, I’m very grateful to have it.  But moving forward, working on this blog will only happen after I’ve taken care of myself.

I started putting my health first by going to physical therapy – despite my somewhat traumatizing encounters with physical therapists in the past.  However, as my pain and illness had gradually worsened over the past year, I had been less and less able to exercise.  Of course, my lack of exercise only led to more pain.  This cycle continued until my range of motion became severely limited and even lying motionless in bed was unbearably painful.  I arrived at my first physical therapy appointment with rock hard muscles (not the good kind), cringing in pain.  Fortunately, my rheumatologist had directed me to a compassionate, skilled therapist who was willing to work within my limitations without judging me.  I began dedicating my few good hours a week to attending therapy and doing the recommended exercises at home.  I don’t think I would have been able to begin my path to recovery without the assistance of heavy pain medicine to help me push through the initial pain and start exercising – carefully – again.  For about a month, all my good hours were dedicated to physical therapy and gentle exercise.  I still didn’t cook, clean, or write; I only took care of myself and exercised.

After a month of gentle therapy and self-care my pain retreated to an almost manageable level, but I was still constantly exhausted and unable to think clearly.  My rheumatologist decided it was time for me to start treating my lupus with something more than just plaquenil (an anti-malarial drug).  I was very anxious about this, as I’ve read horrible things about drugs like methotrexate and prednisone.  My rheumatologist told me I could take imuran as it “wasn’t quite as bad as methotrexate”, and I accepted the prescription with trepidation.

Imuran, also called azathioprine, essentially works by killing your immune system.  It stops the reproduction of white blood cells, which the immune system needs in order to function.  Since this drug shuts down your immune system, it also takes away most of your ability to fight off infections – leaving you rather vulnerable.  However, full blown lupus also makes you vulnerable to infections because your immune system is focused on attacking your healthy tissues.

Other scary side effects of imuran include increased chances of certain types of cancer, a rare fatal brain infection, liver disease, and so on.  Of course, doctors are quick to point out that active lupus will also increase your chances of cancer and organ damage, so your relative risk on imuran isn’t actually much higher.

Still, it’s such a serious drug that pregnant women are warned not to touch the tablets – it is actually categorized as a group 1 carcinogen.  (Update: I would like to acknowledge that I did end up taking imuran while pregnant, because doctors do advise people to take it when the benefits outweigh the risks.  For a healthy woman, it would still be advised that she not even touch the tablets as she has no reason to take the risk.  Ironically, I actually became pregnant, unexpectedly, in the week after publishing this blog post.)

I deliberated for a few days about whether I was really sick enough to take a drug like this, feeling stuck between a rock and a hard place.  In the end I decided that I was indeed sick enough.

After a month of taking imuran I felt noticeably better.  My mind was clearer and my pain was more manageable, I was able to sleep, and I started cooking again.  I went out for dinner without having a pain-related meltdown.  I’ve been fortunate that, so far, I haven’t had my hair fall out and I haven’t had issues with nausea (both common side effects).

I have achieved what I call my ‘lupus normal’.  I am living a somewhat normal life with lupus – something that I didn’t think was possible when I was in the depths of my sickness.  I’m a bit surprised to be here, it’s almost like someone has turned bright lights on in a dark room.

But I still get tired pretty easily.  I still need my pain medication for anything more than a quick trip to the store.  My knees usually hurt in the evening and I have to be very careful about infections.  Yet I’m still amazed that I’ve come through the worst of my sickness and made it to the other side.  I have survived something terrible and I never want to return.  I would do almost anything to avoid entering those depths of sickness again.

Who knew all I had to do was kill my immune system and commit to putting my health first?

I can’t be sure how long this will last, of course.  Things could change abruptly and unexpectedly.  Flares, organ damage, hospitalizations – these things lurk just around the corner for anyone living with lupus.

Nonetheless, I’m determined to make the most of every minute that I feel better while also being careful not to push myself too hard.  This recovery has happened none too soon, either, as my husband has just started a new job that requires more travel than his last one.  I will need to be able to take care of myself when he is away.

If you are in the depths of your own sickness, I would encourage you not to give up.  Keep seeking answers.  Keep getting out of bed even when it seems like it’s the hardest thing you’ve ever done.  If your doctor isn’t helping you, then find a new one.  I saw a rheumatologist and a pain specialist who both essentially told me my pain was caused by anxiety and my weight before I found the doctor that diagnosed me with lupus and actually helped me.

(Update: While I hope to inspire people to continue searching for good treatment, I have realized – after years of fighting with lupus – that sometimes we do need to take a break from trying to get better. It’s okay to pause and give yourself time to gather strength to keep advocating for yourself.)

I read a story from a woman with lupus that essentially said: the doctors couldn’t help me so I went home and suffered for the next six years.  It was heartbreaking; she developed lung issues from lupus and passed away.  Don’t let that be you – not only because you shouldn’t have to suffer, but because you don’t want to end up in a tragic situation due to lupus.  This is not a disease to mess around with and it can be very fatal when left untreated.  Be relentless in your search for care.  If one doctor says it’s all in your head, or that you just need to try harder, then go home and find another one (after you nap, of course).

For I time I did not believe I would emerge from the depths of my sickness.  Yet, I have.  On my way out I learned a valuable lesson about putting my health first.  I’m grateful for that, and I hope it will help me to create a bright future for myself, lupus and all.

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