My MND diagnosis has affected so many lives in many ways, not just my own. The challenges it has brought in my business and at home are mind boggling. Having said that, I realise how blessed I truly am. Without Steve and my team of carers, I know there’s no way I’d be continuing to smash the stereotypical MND prognosis.
But, as the saying goes “the only thing that never changes is change itself”.
Earlier this month I hit a milestone that I’d hoped never to reach. Four and a half years after my diagnosis, it has come time to put 24/7 care in place.
This new phase has been months in the making. The work that has gone into securing, training and scheduling new carers has been a huge undertaking for Steve and I, not to mention the procedures and care plan that has to be written. . There’s also the overwhelming feelings of being smothered that comes with bringing on new team members. Like any eager new employee, they are all wanting to do their best and ensure my wellbeing. Whilst I am forever grateful, I am totally at the mercy of my carers, and it can be draining and quite relentless at times !
When life revolves around caring for loved ones it is an emotional rollercoaster. Burnout is a huge risk. The toll my MND journey has placed on Steve is enormous. But now we are able to move forward with an expanded, awesome team behind us. The added care and support has benefited both of us and my rehab continues to progress in leaps and bounds.
Plus, the silver lining of this new chapter is that Steve can finally take a break away from home without too much worry! With his super-cute Road Trotter camper hitched up, Steve can dabble in life as a grey nomad and finally get some breathing space and time to gather his thoughts.
I even got into the caravan to take a look. Even if it took two carers and Steve to make it happen, I was determined!
Every day that goes by I keep myself and my carers busy, living every moment and so grateful for the care that I receive!