Home isn’t a place, it’s a feeling

Sometimes, this damned disease gave me moments to pause and gather my positivity around me carefully and deliberately. 


I saw the fantastic SALT (Speech and Language Therapist) the morning after my final plasma exchange. She gave me a thorough assessment, placing her hand on my throat to feel how effectively I could swallow a variety of food and water. She deemed me fit to move from my pureed diet to soft food, and gave me detailed advice on the types of food I might find difficult to eat if I continued to have issues with weak mouth and throat (bulbar) muscles.

I was relieved to get back to eating more normal food. Food, cooking it, eating it, socialising around it; all formed an important part of my life before MG. My family were brought up largely around the dinner table. All my kids were taught to cook and enjoyed doing so. I still looked up and read recipes and food blogs online out of habit. I would have probably still cooked up feasts for family and friends if my hands worked reliably, even though I couldn’t eat them. When I had to resort to only eating soft food, then soups and smoothies, I had dreamt of cooking and eating food, going out for dinner, even just consuming simple things like delicious, plain, crusty bread.

Listening intently to my SALT though, I had to consider for the first time the possibility that I might, just might, never be able to eat entirely normally again. 

Sometimes, this damned disease gave me moments to pause and gather my positivity around me carefully and deliberately. 

I told myself that being able to eat at all might have to be enough. The patient in the bed next to me, younger than me, had been told after her SALT assessment that she would never be able to eat or drink again. A devastating burst brain aneurysm had rendered her almost completely paralysed, unable to communicate much at all, yet completely, cognitively aware of everything around her. She was going to need a permanent feeding port after repeated chest infections from aspirating food and water into her lungs.

I counted my gratitudes wholeheartedly, and adjusted my sails once more.

My dinner of macaroni cheese and mushy vegetables that evening was divine. I almost made noises similar to the famous scene from ‘When Harry Met Sally’!
One of the neurologists came to assess me, and pronounced that if I didn’t slip back, I could go home the next day. 

A little later he returned with a troop of student doctors. After asking my permission, and telling me just to simply answer their questions without giving a hint of what was wrong with me, he let them loose. They haltingly ran through a series if diagnostics, quickly picked up why a neuro patient might use a spirometer and reached a conclusion. I was impressed!

The next morning came around slowly, day 22 in hospital. I felt better than I had since MG had hijacked my life at the beginning of November. Another neuro assessment concluded the plasma exchanges had been a success, and that apart from residual weakness and generally being deconditioned from being in bed for three weeks, I was medically fit and could be discharged.

He returned again with another group of student doctors. This time their assessment of me was part of exam and took a lot longer. Helping doctors in training recognise this rare disease outweighed the feeling of being a curiosity. The more of them out there who could spot the symptoms, the more people might get as swift diagnosis as I had.

Dr D stopped by to check on me. He said the beneficial effects of PLEX should last between six and twelve weeks. He was meeting with the surgeon, Mr C, the next day, and wanted to book my thymectomy for about a month’s time before the plasma magic wore off.

All that remained was having the central line removed from my neck. 

Easy, right?

Except, nothing about my experience had been straightforward so far. 

The nurse explained how it was supposed to happen. After lying me down flat, she removed the dressing, cut away and teased out the stitches. After swabbing the area, she pressed down on the wound, told me to take a deep breath and hold it (to prevent pulmonary embolism), and swiftly pulled the line out. She pressed down forcibly on the gauze for a good five minutes, then secured a fresh dressing. She reminded me I was to remain flat for an hour, then I could go home.

She also asked if I wanted to see my catheter. I was taken aback at the length of tube that had been embedded in my artery. It was longer than I had imagined!

My husband arrived, and we waited. My neck began to itch and burn. This was the 2nd time I’d had an allergic reaction to a dressing. I called for the nurse and she quickly removed it and applied a different one. But the damage was done and the skin around the wound continued to prickle. I asked for an antihistamine to counteract the irritation, because I could barely keep from scratching and touching it. Eventually the hour passed. My husband looked at my neck and told me I was still bleeding. 

That wasn’t supposed to happen. We called the nurse to check. She decided I had to lie down for another hour. 

My obs showed my pulse was racing. I focused on meditation music and tried to settle my heart.

At the end of the 2nd hour my neck wound still hadn’t ceased bleeding. This time the nurse took a pen and drew around the bloody patch on my dressing so it would be obvious if it carried on. 

Another hour. Stay lying down for one more hour

I willed my body to cooperate.

Finally, the 3rd hour passed and my blood had finally clotted. 

I could go home. 

I was bursting with emotions. Happiness. Fear. Excitement. Apprehension. 

Why wasn’t I entirely overjoyed?

2 thoughts on “Home isn’t a place, it’s a feeling

  1. I am delighted that you headed home. And I can feel your apprehension. Adapting to change, even change that we want, usually means that we are thrown into fear, despair, denial before we get to acceptance, resolution and integration. Hold on dearest Helen, the winds of change are now at your back. Let them propel you forward with no expectation of how Home “should be”. Thanks for sharing your courage. Love to you, T

    Liked by 1 person

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