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Writer's pictureSuzanne Warren

If only you understood what it took to get out of the house today



You are looking well…

You look strong and mobile today…

You sound sharp and alert…

But you look fine…


Frustrating?

Annoying?

Humiliating?

Demoralising?


Might seem like we are winning — perhaps we are in some small way but…


Do you realise what an effort this took?

Do you realise what I had to do to get here today?

Do you realise how much effort I’m putting in?


Planning and preparation — pacing — organising…

  • Breakfast things laid out ready

  • Hydration in the appropriate bottles

  • Fuel ready to go

  • Timings worked out

  • Clothes selected and folded ready

  • Shoes sitting by the door

  • Handbag prepared and on the stairs

  • Makeup bag out and ready to apply — covering those dark circles

  • Hair washed and styled with the required help

  • Route planner utilised — timing crucial to be there on time — following set pacing

  • medical documents and information prepared…

All are organised the night, day, week or month before.

Old logs and day plans utilised

Analysis of past outings put in place


Might seem like we’re winning — but what is it that we want you to see?


The ability to see behind the eyes

The things we try to hide

The way in which we conduct ourselves

What we have to do to make a trip a success


Somedays we have to move even if we don’t want to…

This can lead to confusion…

This can lead to misunderstanding…


If you had been waiting months for a crucial appointment what would you do if you woke on that day and felt unwell?

Stay home and wait another 6 months?

No, you would go. For us, it’s the same.

Sometimes we have to leave the house.

It just takes a lot of effort — time — preparation.

Other factors need considering…


Heat — cold — fluctuating energy levels — mental health — the combination of medical conditions suffered with — how many people may be around — the time of day — the day of the week.


Might seem like we’re winning — that’s perhaps what you want to see…


Just remember that’s not always the reality.


Might seem like we’re winning — that’s how we want it to be…


For us it isn’t yet the answer — we still have battles to face…


This is one day — in one week — in one month — in one year — the revolving cycle continues.


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