“Patience is waiting. Not passively waiting. That is laziness. But to keep going when the going is hard and slow – that is patience. The two most powerful warriors are patience and time.”

~War and Peace – Leo Tolstoy~

Hearing the kookaburras start to laugh as the sun starts to peak above the horizon signals that the night at long last is drawing to a close.  Though lying awake since 4 am, my Fitbit erroneously thinks I am asleep because I move so little. It alleges I have slept for eight hours…it has no idea!! Thoughts course like crashing waterfalls through my brain. It is not my thoughts that are keeping me awake. That occurs even when I try to meditate and think of nothing. But there are two things occupying me this morning. The first is when to start decreasing my prednisone dose. The second is whether my heart has been affected by my myositis.

The first is important but vague. I have read in the medical literature that patients should take 50 mg for 4-8 weeks, but what determines the 4 weeks versus 6 or 8 weeks? I am six days into some slight recurrence of my muscle strength. This is now my fifth week of prednisone. However, do I need a higher dose of prednisone for longer to continue this improvement?  What will happen if I decrease my dose too soon? Also, my rheumatologist is still away for another 3 ½ weeks…what if I get worse again before he gets back?

But my continuing tiredness and weakness might all be due to the prednisone. Maybe I’ll feel better if I start decreasing it. But I feel so much worse in the morning before it kicks in, so perhaps I still need it. My thoughts go round and round in circles. Nothing about this disease is black and white…it is all shades of grey, and the experiment is being carried out on my damaged body.

My biggest fear at the moment is my shortness of breath as this is one of the earliest signs of heart muscle involvement. However, breathlessness in my illness can be due to almost anything and everything. It could be due to lung fibrosis from the Myfortic (well, I’m not about to stop that at the moment!) or interstitial lung disease (less likely with my normal chest cat scan). Of course, the simplest explanation is that it is due to my recent pulmonary embolism, but it seems to be getting worse and not better.

I can sleep lying flat with no problem, so my respiratory muscles are holding up. But as soon as I do anything, my heart rate heads to the 130s, and I get very breathless. After getting dressed and brushing my teeth in the morning, it takes me half an hour to recover. Even in the evening I still get tachycardic when I do anything…though I am less short of breath. I try to settle my fear with the knowledge that even if my heart is affected, it won’t change anything right now. I am on medication. I still just have to wait.

So sleep eludes me, which probably only makes me feel worse, which makes me worry more…and I still have to get through the three weeks until my rheumatologist returns without causing anyone any trouble!! I have been very blessed over the last month to have some contact every week to reassure or reassess.

So now I’m just tired. Too tired to knit. Too tired to read. Even too tired to watch TV. Is it merely tiredness, or am I now spiralling down into depression…two months of sitting and waiting and hoping and fearing and now I am going numb and dysfunctional. But I could just be tired too…it feels much the same. I have spiralled down before, so I know what it’s like.  The feeling of despair was different that time, the feeling that there was nothing I could do to right matters. This time I just have the feeling of a lack of control, but mostly just exhausted and breathless…

I am used to being busy, fitting in my hobbies around the small spaces of time available between household duties and workdays. At work I have another social outlet, many of the nurses and doctors are close friends and we have shared life in some cases for decades. We had children together and watched them grow up. I hear stories now of grandchildren. Now, all I have is what is inside my head, which only gets worse as I read the latest research and academic papers, most of which offer no practical advice. This is doom scrolling in a different way than a diet of social media or even more depressing world news.

But then God reminds me…as I read about the experiences of Jeremiah when Jerusalem fell and everything felt hopeless:

When called to drink of the cup of tribulation and sorrow, and when tempted in his misery to say, “My strength and my hope have perished from the Lord,” he recalled the providences of God in his behalf and triumphantly exclaimed,

My soul still remembers
And sinks within me.
This I recall to my mind,
Therefore I have hope.

Through the Lord’s mercies we are not consumed,
Because His compassions fail not.
They are new every morning;
Great is Your faithfulness.
“The Lord is my portion,” says my soul,
“Therefore I hope in Him!”

The Lord is good to those who wait for Him,
To the soul who seeks Him.
It is good that one should hope and wait quietly
For the salvation of the Lord.

~Laminations 3:20-26~

I thank God for reminding me that He has got this – as I think about how He has cared for me over the last two months, I know that He will give my doctors the wisdom to make the right decisions for me. I can trust them, and I can trust God. I thought maybe I should be fighting for what I thought was right, but in actual fact, I don’t know what is right anyway. God does and I can trust Him to lead. I will hope and wait quietly.

Later that evening I try to raise my hands above my head, and find I can get them all the way up…for a few seconds. By the morning, I am back to where I was, but I can see that I am still making a tiny amount of progress. Just when I start to doubt and fear, God sends me a glimpse of hope. All I can do is wait and hope in Him. If I place my trust in God’s promises, they will be all I need, in every experience, no matter how fearful.

There are no absolutes in this disease, so all I can do is have faith in the process. Too much prednisone can be as bad as too little prednisone. I will let my rheumatologist choose and listen to his logic. My logic will be more flawed, as I am too emotionally involved. True, I know exactly how I feel, but the cause of those feelings may not be what I think they are.

At the moment I think I need the prednisone because I am much worse in the mornings before I have my prednisone. My logic is that when the disease process is truly under control, then I will start to feel better and have more strength in the morning. But Immunoglobulins may have other side effects. If I am getting slowly better on the prednisone it may very well be better to wait and see what I’m like in four more weeks. Waiting is so hard when I just want to be better now!

After breakfast, I did a search for some information when a new paper came up that I had never seen before. It compared the effect of early and late IV Immunoglobulins in patients, with a significant benefit to having them early. They tested hip flexor strength as their baseline, my weakest muscle. All of a sudden everything fell into place – maybe I really did need Immunoglobulins sooner rather than later.

Did I have the courage to send the paper to my rheumatologist prior to my appointment? It made sense…it didn’t seem too pushy…he was going to have to read it to make a decision after all. I rang his receptionist, obtained the practice email, and sent it to him with a rundown of my activities over the last month. I express myself far better in writing, with time to think, so maybe that will help too. Another God-sent hint showed me that He is always there, watching out for me. And what do I need: only patience!

We also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.

~Romans 5:3-5~