Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

~Invictus – William Henley~

July had been altogether too exciting. Two hospital admissions, IVIGs, a lung abscess, followed by a month of antibiotics. Now I was hoping for a few boring months where the only excitement was a gradual return of strength, which would hopefully be joined by a bit more energy.

Energy had been a scarce resource since the end of March. But now there had been a small glimpse of what had once been unremarkable. After my first immunoglobulin infusion, I could walk half a dozen steps across the room. This was a feat I hadn’t contemplated achieving for some time, as I was only able to hold my hips in position by locking my knees and using my body to swing my recalcitrant lower limbs.

But by the Friday before my second infusion of IGIVs, I felt utterly drained. This was joined by a decrease in the range of movement against gravity. I was so tired I wondered if I was depressed. Completely exhausted…unable to concentrate, unable to knit even…a very bad sign!!

I have been really depressed before, and tiredness was only a small part of it. It was more a feeling of hopelessness, and I definitely still have hope! I figured if I felt like this all weekend, I’d hold off my subsequent prednisone decrease until after my immunoglobulins on Tuesday.

Of course, it could also be due to feeling slightly better over the last two weeks; now that I’m back to my usual state, it feels worse just because I’ve been feeling better! I will have to just accept that some days and weeks are going to be better than others. Or it could be my lung abscess playing up. My chest pain didn’t really improve last week, and on Thursday, I was coughing a lot, but my cough is much weaker now as my immunoglobulins wear off.

So…I have no idea why I’m so tired. I recite my constant mantra: It will either get better or get worse! Sunday was a bit better, so I decided to decrease to 20 mg prednisone anyway. A good friend who also has a chronic illness summed it up so well: “Yes, I know that feeling of ‘post-traumatic stress’ that kicks in when you have a relapse!”

Post-traumatic stress…something that hits me constantly when, what I can manage one day, I have no hope of achieving the next. Each day seems random, the multiple little exertions adding to or subtracting from my ability to function. One day I can put a load of washing on. The next day, I may struggle to walk across the room.

And then added to that is my chest pain. After having a PE and a lung abscess, when can I ignore it, and when should I be proactive about it? The problem is that I know I have to be self-aware! I can’t just be tough!! I’m perfectly capable of just putting up with any symptom…which is fine when I’m healthy…like with morning sickness. But it is not fine when I am not healthy.

I worked all through my pregnancies, sometimes vomiting all day, forcing myself to eat, occasionally even fainting!! But what else was I to do? Even now, I’m quite capable of putting up with anything for months on end. The question is, which symptoms can I safely ignore and which ones should I be proactive about?

Pain is obvious…but not always. It could just be muscle pain. Fatigue is not obvious. Because I am constantly fatigued, and all the different causes blend into each other. Coughing may seem obvious, though it may decrease due to muscle weakness. Dizziness, I try not to ignore. It is more likely to mean I am actually sick!!

So I counted down the days until my next IVIG infusion. I would now forget that I could no longer walk normally and would stagger drunkenly until I remembered that my recent ability to mobilise had suddenly disappeared.

When I arrived for my second IG infusion, I found only two bottles of IVIGs by the computer, despite knowing there should have been four. When I questioned the nurse, she said that I was charted for 30 grams. What! I knew my rheumatologist had asked for 70 grams. We had filled out the paperwork together. It was supposed to be 1 gm/kg.

I thought maybe the nurse could ring my rheumatologist’s rooms and pass on a message for him. Isn’t that what she would do for a regular patient? Instead, she asked, “Do you have his private mobile?” Yes…I admitted…and sighed. This month was supposed to be stress-free! So, what else could I do but send him a text, knowing he is seeing patients and feeling really bad about bothering him?

Of course, he was busy and said he couldn’t get to it right away. I said not to worry. I’d probably have to come back tomorrow for it anyway, so no rush. It was already 4 pm, so if it’s after 5, it won’t be available until tomorrow anyway. But twenty minutes later he texted to say it was done! I wasn’t expecting that!

Hot, sweaty, and stressed, I’m now starting to get a headache. I try to relax. Eventually, I took some Panadol and then tried to persuade the nurse that my headache was due to stress, not the infusion. She doesn’t trust me as far as she can throw me with good reason. She knows doctors can’t be trusted to behave!

My nurse rang the pharmacy, and they were happy to give her the two extra bottles, even though the official order hadn’t even come through yet. So, it will all get done today! She was amazed at how quickly my rheumatologist had got it organised. She had never seen it done that fast before! Lol…so stressful for me…but in reality, another miracle!! And probably only stressful because I hate putting people out. Also, I’m so tired…so everything just seems so hard.

Twenty-four hours later, as I sat down on the bed and leaned back, it suddenly occurred to me that I hadn’t thought about moving my legs. I had just put them on the bed! I couldn’t be bothered getting up and seeing if I could do it again, but I looked at the time. It was just before eight pm, 24 hours after finishing my second infusion of IVIGs.

Just because it had been instantaneous the first time, I hadn’t expected it to be the same. I don’t trust this weird disease to do anything rational or reasonable. It could do anything! I resisted the urge to send my rheumatologist a text — it’s too late at night. Maybe just an update in a week or two. Perhaps this is what he expected anyway, but not what I necessarily expected.

What do I do first? The dishes!! So productive. And I have energy. I folded the laundry at 10 pm. Prednisone doesn’t make me manic…immunoglobulins do!! Being able to move is just amazing!

Over the month, while on immunoglobulins and antibiotics, my longstanding shortness of breath and palpitations dramatically improved, and I finally started to gain some weight. I had lost 10% of my body weight early in my illness and even while on high dose prednisone I had needed to eat more than usual just to maintain my weight. I also gained some minute improvements in my energy level, to go along with my dramatic improvement in muscular strength.

I had my follow-up appointment with my respiratory physician, and though I tried very hard to look sick, I’m afraid I failed miserably…though if I’d managed to look miserable, it may have helped. I am my own worst enemy! My manic doctor brain kicks in instead, which at least gives me a rush of adrenaline and helps my neurons to connect. I tell him I still feel sick…but not as unwell as my last admission…and after feeling unwell for almost five months, I now have no idea what feeling well even means anymore.

My lung function tests have improved, likely due to my muscles being stronger. My CT scan is probably better; the cavitation is much smaller. Is what is left scarring or consolidation? Who can tell? So, now the plan is to stop the antibiotics and wait to see what happens next.

I facetiously asked him when he was next on call. Friday week, he told me, so it’s the perfect timing for me to get sick again if there’s still an infection there!! Maybe it’s not a joking matter…but I have to see the irony…if only to preserve my limited reserves of sanity! He also said it wasn’t his fault if I got sick again. It just meant that I needed different antibiotics. These were not words that brought me a lot of comfort.

It made me think of what I say to my patients. I’ll often tell them that if they are worried, to come back the next day, and that I’ll see them as soon as I have a free bed. The young doctors often assume that I would have lots of patients returning with a promise like that! However, very few ever do…and usually when they do, they need to come back.

But because I’ve explained to the patient what is happening and what they need to worry about, they stop stressing about it. I often write them a list of things to worry about and what to do…hopefully they can read my writing:)

I sent my rheumatologist an update after seeing my respiratory physician. He wrote back saying that my CT was looking good and that he thought I’d get better. This simple message gave my overactive imagination permission to relax and stop analysing every symptom. He is probably right, and all I can do is wait…and worrying won’t help. I may as well just relax and enjoy knitting in the sunshine. Whenever my brain starts to overthink, I just tell it…”The odds are I’ll get better…so shut up and think hopeful thoughts instead!”

I have had young doctors ask me if I had ever told a patient that they shouldn’t have come to the ED. I would never do that. We have no idea what experiences patients have had and what they are worried about. Seeing this play out in my own brain has been a bit surreal, at some level, being aware that possibly I am overreacting, but at another level knowing that before this illness, I was probably more likely to under-react and just assume I’d get better. I no longer think I’ll just get better…and that overreacting is probably safer than under-reacting…but that I still can’t live in a state of hyper-vigilance.

Lol…being self-aware…but not too self-aware!!! Such a finely balanced walk between the two…

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate,
I am the captain of my soul.

~Invictus – William Henley~