As I flopped into the recliner chair, my Fitbit ironically informed me that I had just done fifteen minutes of exercise. Little did it know that all I had done was get dressed and brush my teeth! Short of breath and with a feeling that my heart was trying to escape from my chest, I tried to relax. This did not feel normal, even for my new state of being.

I was now three weeks into the treatment of Immune-Mediated Necrotising Myositis, but it felt like I was getting worse and not better. I had been tachycardic from the very beginning, no one was able to give me a good explanation apart from that it was probably just part of the whole inflammatory process. Now I worried that it was a sign that I was deteriorating, instead of stabilising as I had been hoping. At least I had an appointment with my GP the next day.

I had already had a panic the previous week when I got my first post-PE blood results back. My WCC was still 21, though my CRP had come down from 100 to 20. Emergency doctors tend not to ignore a WCC of 21! Did I have pneumonia, the symptoms masked by my immunosuppressants? A phone call to my respiratory physician’s receptionist soon returned a message.. It was probably due to the prednisone and not to stress. He had read me well the day before when I had seen him in his rooms, tired and breathless and fed up with feeling exhausted.

But now, one week later, I was feeling even worse. The last time that happened I was diagnosed with bilateral pulmonary emboli. What was happening this time? Was the myositis continuing on unabated despite my treatment? Did I now have involvement of my heart or lungs? True, the mycophenolate does take at least a month to work, but I was on the high-dose prednisone. Every time I saw my rheumatologist he talked about possible third-line treatment, but I had no idea what time period he was looking at. I had been expecting three months of waiting, and now, after three weeks, my body felt like it was falling apart again!

It doesn’t help that there are no statistics to comfort me! There is no 95%, 75% or even 50% chance of success with any given treatment. There were only the bland, but stark words: “Recovery is variable, depending on the original insult to muscle, treatment and support; some patients recover fully. However, there is no good data regarding this condition.”

I had facetiously said that no matter how unwell I felt on prednisone, it would be nothing compared to the constant nausea and fatigue caused by the myositis. Was I ever wrong!! Or maybe I was just more tired. Before I was sleeping well. Now I lying awake for hours every night, caused either by the Prednisone itself, or the fact that it was wearing off! Sometimes I feel OK by lunchtime. Other days I am exhausted all day. My prednisone mania seems to be gone, to be replaced by lethargy and brain fog once again.

My General Practitioner said she would ring my rheumatologist and get back to me at lunchtime. She had good news. He thought my symptoms were all due to the Prednisone, but just in case to continue 50 mg for an extra week or two. He was going away the next day for a month, but he would not even consider the next treatment option until after that anyway, and preferably not for two more months. He would see me the week he got back to see how I was. What he did not tell me was not to worry!! He knew better than that…

It was the best possible scenario. I had a plan. The logic made sense. Now I was back to waiting…trying not to worry, trying not to let fear outdo hope. And hope can only remain when we remember who is with us every step of the way, suffering with us, feeling our fear.

So each day I have my routine – something developed over 20 years of homeschooling. If you have a plan for your day, things get done. Not that I can do much, but at least it feels like I am doing something! I start the day with my medications – Myfortis on an empty stomach so it can be as effective as possible.

Then breakfast – the meal I can go to town on because I still have no prednisone in my system to play havoc with my blood sugars. Cereal, banana, raspberries, yoghurt and Punjabi Chai tea in a pot. It’s packed with calcium and vitamins, and it’s so delicious that I start looking forward to it the night before! I made the decision early on that I would rather eat my Calcium than just take supplements – better absorbed, tastier and more protein for my damaged muscles.

Three weeks after starting prednisone, I remembered my past history of gestational diabetes. A quick Google search found that I was a high risk for high blood sugars on prednisone…probably a 75% chance that I would have difficulty controlling them. Finally, some statistics I could base my life on!!

Not wanting to cause my body any unnecessary stress, I researched the best way of monitoring my BSLs. My GP could do an HbA1c every two weeks – but that seemed a bit vague. I had spent six months monitoring my blood sugars while pregnant with my twins. That seemed more straightforward, and even better, it was immediate…something for my Type A tendencies to overfocus on! I would have a given blood sugar for a given meal, so I could experiment with different foods and portions.

I texted my husband to ask if he could go and buy me a Bluetooth glucometer from the chemist. How hard could it be? It was probably harder than it should have been. I don’t think chemists have many people just showing up wanting to buy glucometers who aren’t actually diabetic. He told them I was on prednisone, so not technically diabetic, but at risk of diabetes. He didn’t tell them that I had used one before, or that I was a doctor. But they did eventually, reluctantly, sell him one when he assured them that his wife did know how to use it!

After breakfast, I take my Prednisone and Eliquis and do some exercise – getting dressed and brushing my teeth😊 Last week this would put my PR up to 140, but now only in the 120s…maybe I am improving. SOB and exhausted I now need a rest so I put my feet up and watch the Antiques Roadshow.

I try to fit in some reading before lunch if I have the energy. My current book is A Day in the Life of Abed Salama – A Palestine Story, a portrait of past and present life in Israel and Palestine. This is written dispassionately and with great sensitivity for both sides of the Palestinian/Israeli conflict by an American Jew. It has moved me so much that I have just ordered another book – a book that ironically goes with my present state of mind: The Land of Hope and Fear: Israel’s battle for its inner soul by Isabel Kershner. Having grown up in Pakistan, a land of conflict itself, I can see both sides of this difficult situation and ache for both of them.

My own land of hope and fear plays out daily in my mind. Do I Google what seems to be an innocuous question and risk facing something else to worry about? I tend not to catastrophise, but it’s hard when there are many things that I shouldn’t ignore, to the detriment of my own health and well-being. My baseline personality tends to the sanguine rather than the melodramatic, a state of mind more conducive to healing and growth. More statistics may very well tip me from the land of hope, deep into the land of fear.

I read with interest an article entitled: The Median Isn’t the Message by Stephen Gould on his own diagnosis with mesothelioma cancer and the statistics of survival.  With a new awareness, I realised that the dearth of statistics about my disease actually meant that I had few concrete facts to worry about. Each paper was mostly the story of one patient, someone who may be very different to me. I just have to continue to live one day at a time. Hope is better for healing than fear.

By lunchtime I have to be more careful with what I eat. This seems to be the hardest meal to keep under a BSL of 11. With my fasting and post-breakfast BSLs all in the normal range for a week, I now just do my after-lunch and after-dinner readings. So far, only one 11.1…but not many below 8, so I am borderline. I am at risk until my prednisone dose is under 7.5, which will be a long time coming.

After lunch, it depends on my energy. Sometimes I do some writing (like today!) Sometimes I watch TV – usually a documentary of some sort. Then I may nap, read, do some embroidery or some knitting – often joined by my daughter Isobel – and wait for Cam to come home and give me some scintillating conversation. I am at my best between 5 and 10 pm – but try to get to bed by 10 pm to provide me with the best chance of getting 5 hours sleep before the lack of prednisone in my system wakes me up at 3 am. Then it’s a matter of dozing off and on until 7, when the new day starts again.

Now almost four weeks into treatment I am still unable to lift my arms, get out of bed, wash or brush my hair or dry myself after a shower.  Cam heaves me out of bed at 7:45 as I am still unable to get up on my own. He gives my hair a brush and makes the bed, because he knows I always make the bed, even though his favourite thing is to let the bed air during the day. We are both thankful that I can still walk, get dressed and get myself breakfast.

And then it happened – Wednesday, May 22, 2024. I went to do something with my hands and realised I could touch the top of my head. Overnight, I had gone from minimal shoulder movement to getting my elbows to 90 degrees!! My heart then started racing for a different reason!! This was at least the beginning. There are sure to be many ups and downs from here on. I am not entirely naive. I still have to decrease my prednisone and see what happens then. But hope is now on the ascendant.

The next day my rheumatologist rings to see how I am. He is leaving the next day for a month and wanted to ensure I wouldn’t need to start Immunoglobulin before his departure. It was so good to debrief with him, to validate my feelings, to admit to my dislike of melodrama and panic, for him to tell me I had done the right thing…most of all, ironically…was for him to tell me he was still worried about me. This was reassuring, because I’m still worried too! But now we had time on our side. We could wait until my appointment next month. Until then I try to balance my hope and my fear – the desire for the possible, my awareness that it may be impossible – but not to spiral incessantly down into the deep valley of despair.

For we were saved in this hope, but hope that is seen is not hope; for why does one still hope for what he sees? But if we hope for what we do not see, we eagerly wait for it with perseverance.

~Romans 8:24-25~