A fragile sanctuary

What happened to my six to twelve weeks relief from MG?

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I was happy to be home. Really, I was. Only, it didn’t feel quite like my home. I felt like a visitor. Hospital had become too comfortable. 

There were several reasons I didn’t feel settled once I returned home. Firstly, as homesick as I had been during my time in hospital, I’d felt safe. I knew if my breathing got too bad, that I’d have been taken to ICU and ventilated. They wouldn’t have let me die. I knew if I couldn’t swallow my meds that the staff would have somehow managed to get a feeding tube into me. But at home there was nobody but me to judge how ill I was. And I’d definitely left it very late to raise the alarm about the worsening symptoms of my first crisis. 

I was also keenly feeling the loss of my independence. I’d clung on to both my financial autonomy through continuing to work (far too long, as we’ve already established), and my physical independence, primarily by simply refusing to admit I couldn’t do things. Not asking for help meant not relying on other people meant not being dependant.

My beloved had shopped and bought me stylish pyjamas, spent hours driving back and forth to hospitals, held my hand through medical procedures that I knew freaked him out, whiled away countless hours beside me in smelly hospital wards, religiously collected, laundered and delivered back to me all the pyjamas I wore, kept our cats from going insane wondering where I’d gone, even endured MuckDonalds and BleurgherKing meals. He had anticipated all of my needs. I wanted for nothing. But still, I hesitated to ask for more. I knew he would help me if I asked, but I resented my failing body so much I couldn’t bring myself to acknowledge it by accommodating the weaknesses.

During my interminably long stay in hospital, I had some honest conversations with a couple of close friends and my mum-in-law. Almost everyone who knew me had been taken aback at how fast I had become so ill. I had to admit that I’d done a decent job of hiding how weak I’d been getting. I finally disclosed exactly how incapable I had become the last few months. How I hadn’t really been doing any housework or cooking. That it had even been a struggle to meet my own personal needs. Now I wanted to put it all back in it’s box. Pretend I was ‘normal’ again, or approaching it at least.

I tried to do as little as possible over that first weekend home. I did get my husband to drive me to town to have my out of control eyebrows waxed. We also drove the short trip to the seaside where I managed to stroll really slowly for a few hundred yards. We bought chips and sat on the seafront to eat them. I started to have trouble swallowing them after only half a dozen. We went home then, and I slept a lot in the hope that rest would fend off the creeping feebleness. 

I had a really cool scar on my neck from the central line, that made it look like I’d been attacked by vampires. This amused me but didn’t dent my impending sense of doom.

By Monday the miraculous effects of the plasma exchange had evidently started to wear off. Already.

6 days.

What happened to my six to twelve weeks relief from MG?

I went to bed that night breathless. I propped up my pillows knowing that if my breathing was compromised it wasn’t safe to lie flat. I thought maybe anxiety was making it worse, so earnestly tried to mediate. I fell asleep eventually, after setting an alarm to wake me for an additional mestinon dose during the night.

Tuesday my daughter visited to fix my hair. She whizzed round tidying and cleaning too. After she left I spent the afternoon in bed. I still believed my continued weakness was temporary, that I simply needed to do less. Short of literally living in bed, I didn’t think there was much less I could do. Maybe I had pushed myself too much. The seemingly short, sedate walk along the seafront must have been too adventurous. However harmless it seemed at the time. I knew I had become deconditioned from spending three weeks in bed, but was a little incredulous that I couldn’t even seem to manage the slightest exertion. 

How was I going to stay strong enough for surgery? It was only days and I was already weakening. 

That evening I struggled significantly with eating dinner. Taking tiny forkfuls of pasta and trying to wash each one down with water only got me about halfway through. By bedtime I was severely short of breath again. I lay in bed concentrating on breathing calmly and wondering at what point I should call an ambulance.

The next day, number six at home, my dad and best friend had arranged to visit. I got up and went downstairs, thinking I might have enough energy to wash and dress after breakfast and meds. But even getting downstairs was a challenge. I struggled to get my meds down and couldn’t manage to eat. Considering mornings were when I was supposed to be at my strongest, this wasn’t good. Dad arrived and within minutes of chatting my voice was garbled. BFF arrived. She was concerned and asked me at what point would I consider going back to hospital, how bad did it have to get? As I attempted to take my next dose of mestinon and drink some soup unsuccessfully, I had to concede that the time had arrived.

Dad said he’d take me, and I phoned my husband to tell him that disappointingly, I was in a bad enough state to have to at least go to hospital to get checked out.

I repacked my hospital bag. No point in getting dressed now, pyjamas were the dress code where I was going. 

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