what next?

Medically as I become more a casualty of the add-on-symptoms which my conditions cause me – too numerous to isolate- but ALL there- the mountain i carry on my back now…weighing me down in so many ways…i still muse…on and on…

will i ever fly again?

New York- always called me….less now as reality is the question of “HOW could i get my wheelchair onto a plane?…aware of how that would pan out for a family.

will i ever be allowed to drive again?

that to me was a harsh and unnecessary cruelty the withdrawal of my driving licence. I have central hypoventilation  so i use a ventilator at night (as my brain fails to breathe enough). i may be TIRED during the day, so i will “choose” to nap….sleep never sneaks up on me. And since my legs are so little use, i would love to be able to drive short local trips. but really? Resit my driving test? And apply to magistrate? Really? Unfair.

Will i ever feel like an individual?

i am not really a ME – a person now. i am currently cared for in every sense by my husband who is being denied recognition for what that entails. I am a patient. He has become both mother/father/carer/cook/taxi/cleaner….and only able to juggle so much at a time…  and i cause that RUSH in his time!         I sit in my space and sleep in my space- cared for. Dependent COMPLETELY on him for food, travel, medication…never what i envisaged as our relationship when i pictured us growing old together. not to be. 

Will i ever be able to do something impromptu?

a choice? a choice to go somewhere? a quick decision? Just cos i want to? a spur of the moment idea which only appeals to ME? A shop? A visit? A trip? A play? Lunch? Mass?

i don’t think so.




  1. Helen, as we age I’ve learned that we have accept that there are things we can no longer as well as we once did and some we’ll never be able to do again. And for those of us who suffer with chronic pain issue, that situation is even more pronounced. And so we have to learn to focus on what we can do instead of what we can no longer do or may not be able to do. And as for our spouses, they took a vow as did we that said, “for better or worse,” “in sickness and in health,” “for richer or for poorer” and so on. So the key is to find new things that we can do and try to remember all the meals we prepared for our families, all the laundry we did, all the myriad of ways that we cared for them and realize that maybeit’s just their turn now to care for us. Neither of us wanted or could envision what our lives are like now, but as they say it ain’t over til it’s over. What we once were will and can never be again, but I’d hate to think that’s all we could be or do. Hugs and blessings, Natalie 🙂 ❤

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