Fuck this disease. Fuck You MND.
Some days it takes more than it already has. Some days, anger is easier than anything else.
Mum and Shane went home after staying with us for just over a week, and within hours it was one of those days that reminds you how relentless MND can be.
A lot of physical care. A lot of quiet resilience.
This is the part people do not always see.
- The exhaustion that builds.
- The constant being “on”.
- The fact that carers do not clock off.
Mum is worn out. And still she shows up. Every hour. Every day.
She often says she does not know how Shane does it either. The strength it takes to endure what his body is doing is hard to comprehend.
But there is another layer that is even harder.
She is grieving someone who is still here. We all are.
Caring for the man you love while watching pieces of him slowly disappear is a very particular kind of heartbreak.
There is no big message in this post. Just reflection, a bit of anger and some honesty about what we all deal with every day.
Behind every person with MND is someone carrying them through the night.
And behind that person is someone else watching the exhaustion, trying to lighten the load, trying to be strong for the strong one.
This disease does not just take from one. It takes from the whole circle.