The reality of my condition is that Palliative Care is never too far away.
MND can progress pretty rapidly. 12 months ago I was at an all-time-low. I started to have a few fainting incidents and I would black out temporarily but always came out of it. I think it was due to not enough fluids and food. I had to call the ambulance a few times, the highlight being they were very hot and muscly so I came back to reality fast. Unfortunately I decided to get Palliative Care involved… sorry no hot ones here.
The Palliative Care team is fantastic and plays a very important role in end of life care, both for patients and families. I had a couple of face-to-face visits where they laid out all my options. I then moved to monthly catch up phone calls to track my progress, knowing they could step in at a moment’s notice. Little did they know, I decided to double down and work even harder on my rehabilitation, using exercise and nutrition, as well as mindset strategies to focus on my healing. I was a woman on a mission, no matter how long it took.
Two months ago, the day finally came. They called to deliver the news. I was being sacked! Apparently my ability to claw my way back had exceeded all their expectations. They were effectively dumping me from their program!!
Whoop, whoop! The best news EVER!! I was feeling triumphant.
In all honesty, I think they were just getting sick of hearing about my answer to pain management: stretching, movement and exercise, with meditation. It flawed them every time. I’m sure they do a marvellous job, I certainly don’t envy them. For now I do the occasional check in, but happy to report I’m continuing in a different direction.
I give credit to my carers, allied health team and most of all Steve who continues to be there for me no matter what.
Keep being awesome!