When the present is unpleasant

I spent the day resting like it was my full time job.

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Being in the moment was tricky sometimes. Modern life, western life especially, was target driven, solution focused, problem solving, all economic growth and high achieving. Above everything, let’s never forget to block out reality with materialism and social media and news agencies dictating what to think, and stuff. Things we need. Gadgets. Tech. Keeping up.
Sitting comfortably in the present moment all the time? Who does that! 

But when the present is icky, painful, difficult…. now that takes some courage. To remain right there, and not seek distraction from the emotional distress or physical pain, that required some element of self awareness and desire for growth. Practice played a part. As did having faith. Trusting that it was only a moment. It would pass, evolve, metamorphose into something other.

I mostly liked moment-submergence. Much of my time was m spent doing things I enjoyed now. Even if not wholly, I chose to enjoy the enjoyable bits. The people I spent time with were precious to me. They made me laugh, cry, think and feel. I chose not to spend much time with people who were more of a destructive persuasion. I did seek out new experiences and wholeheartedly savour them. 

Being in hospital in the midst of my first myasthenia crisis terrified me, at first. I truly wondered if I might die. I desperately tried to stay calm. I wished the time would pass rapidly to a point when I would be OK. 

I took to concentrating on the visits, calls and messages from many, many friends who were channelling healing energy, thoughts, love and prayers my way. I communicated their collective will inwards to Thelma and my embattled immune system. 

I reached a point after one earnest meditation session, when I realised that if I did die, I probably wouldn’t know much about it. If I hadn’t come round after the first IVIg session when my heart rate plummeted and I lost consciousness, the last thing I would have been aware of would have been a strange cold sensation in my chest.

Now, sitting comfortably with that notion wasn’t easy. I had to choose to place to one side thoughts of how my husband and kids would deal with my sudden death. I accepted that, quite simply, all I could do was everything in my control to live. And if I didn’t survive? Then their grief would be theirs to work through. As much as I yearned to save my beloved and my children that pain, I couldn’t. 

Once I had let this all settle in my mind, the acute anxiety I felt receded. 

After a better day when I’d managed to start swallowing water again and avoid a feeding tube, I lay in my bed that night looking around the ward. The five other patients were all elderly, most with some form of dementia. I realised that I knew all their names. Awake on and off all night to take medications and have obs done, I began to look after them a little. Calling nurses on my alarm a few times to stop a couple of them who were determined to break out. Talking to one who was confused and trying to calm her. 

I didn’t fully realise how far my worry had ebbed until the next day. Still severely ill, I was woken up at 6am on my final day of IVIg by a nurse to do a spirometry test.

I blew 1.32

Way below acceptable. The nurse knew it was low when she heard me groan,

Oh no!

The nurse told me she was going to bleep the medical registrar. Don’t worry, she said, it might just be that it’s near the end of your last dose of mestinon. 

The doctor arrived and checked me over. He asked me to blow into the spirometer.

1.53

I told him I was running low on mestinon. As I was on a 5 x daily dose and had taken the last dose at 11pm the previous night, he suggested I take one immediately. He went off to speak to the nurses to get them to start my privigen infusion and let my meds do their work. When he got me to retake the test around half an hour later, I blew 1.62. 

He said he was satisfied that I didn’t need to be ventilated right away, but that spirometry tests must be done every two hours. If I tested below 1.5 again, I would be intubated.

During my new routine morning message conversation with my husband, I told him that as it was my last day of treatment and I was back in breathing crisis, I thought it might be a good idea to limit visitors and rest as much as possible.

I was still incredibly weak, finding it almost impossible to lift my head from the pillow. Every morning after struggling to get myself washed, my hands would become useless. My arms and legs felt like concrete, making it difficult to get in and out of bed. And my voice. My speech was permanently distorted. I couldn’t utter more than a few sentences before the horrible nasal tone showed up. 

I spent the day resting like it was my full time job. 

By the end of my final privigen treatment my breathing was stabilised. 

The next day I decided to continue my new approach to rest and wholeheartedly focus on wellness. Remaining in the present without distraction, while simultaneously relaxing wasn’t something I was practiced at. I had honed the art of diverting my attention over the years. Usually by getting busy, doing practical and useful things. Not now though. I needed to do precisely the opposite. 

My husband got permission to take me off the ward by wheelchair. We went to the onsite coffee shop so I could try my first latte in over a week, then took me to an internal courtyard garden he had come across.

It was exactly what I needed in that moment. My little corner of peace. My zen zone. I sat and immersed myself in feelings of positivity. I felt restored, sitting there in the warmth of the sun with the fresh air moving gently around me. I held my husband’s hand and considered all the things I was grateful for. My many friends who were surrounding me with loving energy. My husband, his strength and deeply loving support. My kids.
I truly, genuinely felt blessed. In spite of everything that was happening to me, everything that had happened to me over the last five months. Or perhaps in part because of it. 

My determination to overcome, find a way to reinvent my life to accommodate myasthenia, do whatever I needed to do to live my best possible life, was newly reinforced.

Tomorrow, I’m ready for you!

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