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Anyone who lives near the pain knows the feeling of helplessness, injustice, which can make the strongest ones -or those who appear to be- stagger.

Carpe Diem ... That's easy to say ...but...
Not so easy to do when you live with someone whose disease is constantly changing, challenges the established parameters .

Adapting ... That's easy to say ...but...
Not so easy to do ... a daily struggle to find the least worst solution ... there is never a good solution when you see someone you love struggle every day to try to spend a few moments of happiness and suffering without respite ...
And adapt to what?
To adapt , you must know the rules, the different stages that we must be reached ..
When you think you have found a balance, even a precarious one , which brings a little comfort in your life , the disease takes a new path whose rules are not the ones from yesterday and may not be the ones of tomorrow.
Nothing rational, nothing "predictable", because medicine does not prevent knows what tomorrow will bring ... no visibility ...

Every day the disease is gaining ground and removes pieces of life ...

Pain , as we already know, never stops .
It is now up to the dose of the medication.
Crises are becoming more frequent.
Injection every 10 days, "tourniquet-headband " around the head ...
Every day, we "patch-up" our life just to be able to live ... or simply survive ...

Waking up in pain at 4am , waiting for the 7 o'clock medication intake to relieve the pain ( not stop it because nothing can stop it any more ) , enjoying a few hours before the next crisis, and returning home at around noon ... the afternoon is the most difficult time in the day ...

For the past ten days the physical fatigue has arrived. The head does not want to admit defeat .. but the body can no longer abide the exhausting pain ... ...

I'm not saying we are more eager to fight ... ;) no, we are seeking...

Our visits to museums, monuments, photos, our blog ... we share this passion for art .
It's a good thing we continue ... not every morning, it is no longer possible ... but it brings us a bit of fresh air that feeds the mind and allows the damn head to think about something other than illness .

Until December we could go from time to time to see the children in Toulouse ; Loïc could not drive ... we adjusted to the situation.
I was driving, he traveled coated with a neck brace , double injection dose ... and a rest before spending time with the children ...
Today, he can not physically endure car journeys .

Not seeing the children leads him to frustration and stress ... a stress that increases with the frequency of seizures and decreases the comfort of his life already so precarious.

We are bound to finding a solution!
We have no choice ... we need to carry on to living these fragile moments of happiness.
Our strength is that we are together and we both want the same ...
To live and
to love.

Good Sunday to all

Chris.

Spectator pain ...
Tag(s) : #Us