If you can dream—and not make dreams your master
If you can think—and not make thoughts your aim
If you can meet with Triumph and Disaster
And treat those two impostors just the same

~If – Rudyard Kipling~

The sudden onset of weakness smashed into me like a rogue wave, washed me off the seeming stability of terra firma, landed me in a swirling torrent of water, and then a rip proceeded to drag me relentlessly out into the deep and never-ending ocean. The water rolled over my head and it felt like I was about to drown.

After twelve months of good muscle strength I had become complacent. My myositis was well controlled. Now we just had to figure out what was going on with my lung lesion. Halving my dose of Myfortic in an attempt to help my body fight the infection grumbling on in my lung I had no perception of looming disaster. I had full confidence in the ability of my intravenous immunoglobulins to control my autoimmune disease.

My ability to walk without first analysing the length and difficulty rating of the upcoming terrain was now replaced by calculating if one more trip to the laundry would tip my hip muscles over their limit for use for the afternoon. I couldn’t get up from a chair without heaving myself up with my hands and I could no longer move my hips and shoulders against the now heavily weighted force of gravity dragging them down.

But I not only had my new weakness to deal with. I also had the trauma of my symptoms being summarily dismissed by my rheumatologist. How could he possibly say my symptoms were not due to my myositis? I temporarily contemplated the easiest way to die…but instead chose to write a cranky reply back, asking did he think I should see a psychiatrist?

True I had already sustained twelve months of medical trauma, my cough, chest pain and continued sweats and fatigue dismissed by every respiratory physician as being due to my myositis. One even had the nerve to suggest I see a psychiatrist as I seemed very stressed. I retorted that I was only stressed because no one believed I was sick.

Finally, I got angry enough to do my own research and made the decision to have a trial of Bactrim for possible a possible Nocardia infection. This resulted in me being well enough to live a completely normal life for a month. I now had enough self belief to continue to fight for an answer. No longer could they fob me off with diagnoses such as anxiety, depression, or autoimmune dysautonomia (colloquially known as POTS).

My PTSD from this experience probably meant I over reacted to the couple of brief lines quickly penned by my rheumatologist in an attempt to calm and reassure me. He had failed to foresee that they would have the opposite effect. They were more like a red rag to a bull! Yet again no one believing my description of the extent of my disability. Why did everyone see me as such an unreliable historian?

And my new disability was not subtle. Back when I was first diagnosed with myositis I was so oblivious to my own body that I hadn’t even realised I had weakness. I thought I only had pain. I now knew how to monitor my strength, and therefore the effectiveness of my medications.

I always had a few days of weakness just before and after my immunoglobulins, and my rheumatologist always looked at me blankly and disbelievingly as I described what happened. I was obviously getting paralysed muscles but this seemed impossible to him. I could be weak due to previous muscle destruction but that shouldn’t fluctuate rapidly over a few days.

I could have prednisone induced myopathy but I had been on less than five mg daily for more than six months with the ability to walk 8000 steps a day only a few months before while systemically well from my lung abscess.  I had now been off prednisone for ten weeks with only some very slight upper arm muscle pain for the first few weeks.

My weakness coincided with the three month anniversary of decreasing my Myfortic, but I only joined the dots in retrospect. With no thought that I would regress I had not even tracked the number of weeks. This was a rarity for me as I usually kept meticulous records.

My rheumatologist kindly responded to my cranky email with a bit more nuance…but said he couldn’t just take my word for my symptoms. Fortunately I was seeing my GP that afternoon and I would get her to document my symptoms. I would see her again after my upcoming lung surgery and if my weakness continued she would ask my rheumatologist to urgently review me. She said facetiously that he would then have two cranky women to deal with!

For the time being it was possibly better to have a half functioning immune system and partially functioning muscles for my upcoming wedge resection of my lung lesion…probably…though it is what it is. As a doctor the best way to cope with fear is to do some research:) Knowledge is power after all…even if it isn’t curative in itself it may help get a cure.

I had already read a paper on causes of weakness in myositis in an attempt to figure out my weakness prior to my immunoglobulins. It stated that in some patients and at some stages of disease there appeared to be muscle paralysis rather than destruction. My recent weakness took me down the rabbit hole of cytokines and their role in myositis. One paper measured various interlukens in the various sub-types of myositis. IL-18 and IL-23 seemed to be highest in Seronegative Myositis.

So could this be correlated to the effect (or lack thereof) of my medications. Myfortic seems to have an effect on IL-18. Immunoglobulins seem to have less effect on IL-18 but maybe more on IL-23..though that is probably only a tiny portion of what is happening in my body. So both medications were probably working in some sort of synergy…neither of them being enough on their own. I had assumed that it was the IVIGs that had given me my strength back but in reality it was probably timed perfectly with the Myfortic kicking in.

Doing some research there are two clinical trials at the moment though I’m not sure either are particularly appropriate for my specific variant of myositis. Cart T cell therapy uses reprogrammed T cells to destroy B cells and the Jasmine trial uses an anti-interluken medication. The most sensible thing is to wait a month and then hopefully restart Myfortic with my rheumatologists blessing and see if it works once again.

But at least now I had a plan which in turn gave me some hope. This in turn gave me the ability to wait without giving in to despondency. As Pablo Freire wrote in Pedagogy of the Oppressed, “As long as I fight, I am moved by hope; and if I fight with hope, then I can wait.”

Later that week came the new onset of obviously muscular pain…upper arms, upper chest and back, and neck. This time I did not message my rheumatologist. If he wasn’t impressed by weakness, he certainly would not be impressed by pain. I would save myself the mental trauma of being fobbed off yet again.

I found a paper looking at what patients are concerned about with myositis and comparing it to what rheumatologists think are the most important issues in the management of their patients. Patients are particularly concerned with the side effects of their medications. This isn’t surprising as they are the ones having to live with them. Rheumatologists are more concerned with the dose of prednisone…which is probably a more nuanced view of the risks of long-term side effects often outweighing the short-term benefits.

Patients are more concerned with weakness while Rheumatologists are more concerned with functionality…though this is probably looking at the same disability with different descriptive terms. Weakness can be misinterpreted as fatigue or tiredness. What is important is function. This didn’t lesson my frustration as I had been careful to describe my weakness in terms of functionality. I didn’t say I had more fatigue. I specifically said I can usually lift my foot 60 cm off the floor and now at my best I can only do 40 cm and sometimes even less. True, my range of movement doesn’t specifically measure strength. However, my inability to move again gravity actually means I have no strength.

Lastly, many patients had concerns about pain where as none of the rheumatologists considered pain as an important factor in assessing the patient. The main focus of rheumatologists was disease remission, something no patient surveyed had as a concern. Patients are more likely to live in the moment, the possibility of remission far in the future. Pain is what they are dealing with right now, while the future is unknown and unseen. My rheumatologist was very clear at the beginning of my illness that everything would take a very long time. Now he seems more fixated on my possible remission, ignoring my symptoms of regression.

And both weakness and pain are indicative of a recurrence of active disease. I had been pain free and reasonably strong for almost a year. The fact that both had suddenly returned could not be random. And then reading a paper on using a phone app to monitor flares in myositis I had another epiphany. My rheumatologist thought I had a flare which would shortly resolve. I thought I had had a relapse which would need more medication to resolve.

So we were probably talking at cross purposes – neither of us really aware of why the other person was saying what they were saying. I waited almost two weeks before complaining of my weakness. Up until then I had thought it would resolve and I would get back to my normal baseline. My rheumatologist probably missed that and thought that I was merely having a flare which is common in most of the patients that he cares for.

I had never had a flare since my disease had been controlled on Myfortic and immunoglobulins. I had brief periods of weakness prior to my four weekly immunoglobulins, but they rapidly resolved and were not associated with any muscular pain. Every time I presented to hospital complaining of becoming more unwell with my lung abscess, I was informed that my symptoms were most likely a flare of my myositis. My fatigue and sweats, productive cough and chest pain were all blamed on my autoimmune condition – which meant that my lung infection was ignored.

I have learned that I am the only one who knows my body enough to differentiate between the nuances of my illnesses and so I am the one that has to fight. But for now I wait to see if disaster will be averted…but even if not I will still be OK…because I will not be overwhelmed by disaster or made overconfident by triumph…but will continue to live one day at a time.

If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting…

~If – Rudyard Kipling~