invalid… invalidated.


Trust.

health trust?

can’t trust.

care?

WHO cares?

WHO cares about you….really?

i am an invalid…a burden on my family…causing  the most incredible change in family life…causing all the family extra work…but a lot of care tended by my husband….and the family all need to adjust. but care in this context translates as loving care

I have adjusted in lat 2 years of “care”….taught about limited energy, so prepare in advance. All action has a reaction after a brain injury, so its prepare, action, recover.

PREPARE, ACTION, RECOVER.

prioritise…if you have more than 2 things on in short spell, be sensible, prioritise.

Prioritise.

What are your priorities?

ALWAYS- my children. “My children will ALWAYS be my priority”.

Always to watch my children.

To watch TV with my children.

To watch my children playing football

To go to the cinema with my children.

The isolation that goes with illness is stiffling.

So “care” prepares me for re-socialization.

6 months preparing for socialising.

6 months of what ifs …

what if i meet…?

what if i see…?

what if they say…?

what if they ignore me?

what if they COME OVER?

Then wait til you have the chair that will be right for you.

FUNDRAISE. Trust don’t help there.

Fundraised for 6 months.

Got wheels…or LEGS.

Beginning to re-scocialise….while prioritising...and preparing.

Napping due to brain injury’s well accepted FATIGUE…the all encompassing fatigue- measured and studied as part of prioritising.

The fatigue which in me is compounded by a new problem of central hypoventilation syndrome…a dangerous sleep problem to be medically “cared” for.

the fatigue was carefully planned on the weekend away… but 3 days away felt so good in my LEGS..with my family… i loved it

.freebird

but then ONE DAY  when LIFE circumstances become complicated with your family, and you need some help from those you “trust” – you GENUINELY ask for “HELP”……………do the trust then “care“?

no. then “trust” becomes purse holder be “care-ful” with ££s and all learned, rehab, agreed, ALL previous relationships distort beyond recognition. yet i NEED these people in my ongoing CARE! and i try, and i try to retain these relationships and not to allow them to be disfigured and irredeemable. i try that so hard. i SPEAK of the need for medical, and emotional CARE being on-going…..as these are the specialists… and my problems are for life.

yet i am now told in one EVALUATION of CARE …forget all you have prioritised to do…all those years working to accept the new you…the years telling me to SET priorities…to get out…to see how that felt all become “can cut carrots.”

can cut carrots” yet we buy them cut.  we SPOKE about that. And the tastelessness of bought mashed potatoes….we spoke about that… TODAY!

COULD cut carrots….. WHAT?????? WHEN????? WHY???? in a brain injured existence where i have a certain amount of energy reserve.

COULD cut carrots must replace prioritise and resocialise.

COULD cut carrots must be the mantra on which my LIFE is assessed.

COULD cut carrots……..a LIFE? for REAL? a limited LIFE that i have learned is enough????

COULD cut carrots instead of re-socialising?

COULD cut carrots instead of a cinema trip with my sons?

COULD cut carrots instead of the first girls night out since December 2012.

COULD cut carrots instead of having rested to see the son play football.

and since “i COULD cut carrots” my family do not need to “care for me”.

So this “trust“, don’t “care” that they have just made an “invalid” and her 2 years of rehabilitation fell entirely “invalidated“.

i don’t exist.

i weep silent floods

they simply can not “care“.

So NOW who looks after me?

at home?

at a physical needs level?

at a mental adjustment level?

while i recover from the most painful, unjust, misuse of power…where real needs translate to pence saved.

CARE!

i asked for help…..when help became needed….this is how you answer….COULD cut carrots.

how can you care?

 

 

 

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