ME/POTS has definitely altered my priorities in life and imposed limitations on my capabilities. However, I am still the same person I always was in terms of personality and lust for life.
Still, something (well, someone) has changed:
When we first got together, we made a list of all the things we wanted to do and places we wanted to see. Pete bought a scrapbook to document it all. We were going to conquer the world, one hike, bike ride and hot air balloon at a time.
Then, along came Severe ME/POTS. Being housebound and unable to care for myself for 3 years ensured the only places we visited were doctors, and the only thing we conquered was a menu of soft foods because I didn’t have the strength to chew. And our beloved scrapbook? It went on the scrap heap.
It’s been a slow crawl spanning 6 years, but – thanks to meds – I am more enthusiastic than ever to finally have some of ‘me’ back. And I’m equally as excited to revive our scrapbook. There’s just one thing niggling at me: I barely recognise Pete. He’s … different.
Where did my partner go? Pete’s enthusiasm for life disappeared. He was constantly moody and tired. He had no desire to do anything or go anywhere. His sense of adventure had vanished. Presumably, it got bored of waiting, and went off on an adventure of its own.
It transpires, while I was in the bottomless pit of Severe ME/POTS and Pete was caring for me, my illness had gradually tightened its grip, and was now choking Pete’s spirit like a vice.
After my emergence from the abyss, I was certain I wanted to truly live again and rejoin the world (within my limitations). Yet, Pete was certain those years of being my carer had taken its toll; he wanted nothing more than to crawl into his shell and quietly retreat from the world. ‘Gutted’, barely touches the surface of how I felt.
Carers need rest too. Otherwise, they’re at risk of becoming chronically unwell themselves. I think it’s fair to say, Pete hadn’t had much rest.
We later discovered a chronic illness of his own had taken hold. Our roles reversed and I became Pete’s carer for a year. With lots of rest, pacing and medication, his condition thankfully, continues to improve.
And now, the choking has stopped; his spirit can breathe again.
Coming out the other side, I want a new list.
We have a beautiful son now, and endless possibilities.
It’s finally time to fill our scrapbook ❤
How are the carers in your life doing? Getting enough rest?