It's perfectly
acceptable to be an individual.
The common factor that unites us within PINNT is our
need for artificial nutrition. Our members are either
receiving it, caring/supporting someone either professionally
or personally, working within the field that supplies
or manufactures the products, supplies or services we
receive.
Frequently I receive calls from people who are just
starting out on their new treatment. Calls vary and
it is rewarding to be able to offer advice that has
been gathered from a wealth of useful sources, about
how to cope with the initial impact of home feeding
along with the adjustments necessary to incorporate
it into what is commonly referred to as a ‘normal
lifestyle’.
When I am asked to talk about
life on artificial nutrition I find it necessary to
stress that despite our common bond we are all individuals
with a unique blend of personal goals. Many people forget
that the treatment we receive rectifies the existing
or approaching malnutrition but does not eliminate the
daily difficulties of living with an illness.
Everyone on artificial nutrition does an amazing job
of coping; we juggle a serious and complex treatment
with varied and diverse activities associated with our
normal lives. We must never feel inferior if our individual
achievements do not fall into line with those of other
people – each one of us should be proud of our
individual successes, no matter how great or small.
Sadly, I’ve spoken to people who feel they’re
not making the grade if they’re not as active
as other people, or feel they are not making the most
of themselves if they do not feel the need, nor have
the energy or desire, to go out and prove something
to the world.
For many artificial nutrition will improve well-being
but it will not do the same for everyone. Even those
of you with the same condition will have different expectations,
outcomes and emotions.
So if you are reading this and have at some stage thought
‘why can’t I do that’ or ‘well
if they can do it perhaps I should’ – don’t
unless it’s realistic for you.
Holidays abroad seems to be an ‘expectation’
that cause some of you great concern. Sensible people
may wish to test the process by holidaying in the UK
before venturing abroad - that’s okay too!
I feel slightly aggrieved when I hear
some of the comparisons people are
given when they may be considering
a holiday abroad - ‘they told me it
was easy to arrange’, ‘I’ve been
told
others manage it perfectly well’ –
fine, good for them but do not feel
under pressure to conform to other
people’s expectations or aspirations.
You will know when the time is right
to consider it. Careful planning
is the key factor and don’t do it
because you feel you ought to, do
it because want to. For those of
you managing a painful and
fluctuating disease there is more
to consider than the feeding.
As we progress with our
feeding, and time allows us to accept, cope
and modify our lives trying new
things may be the right thing to do.
It’s tempting to push the boundaries,
defy sound medical advice or insist
on getting things our own way. My
advice to those facing dilemma’s
is to discuss, negotiate and question
any response you find unacceptable
or do not understand – there may
be a logical reason for a ‘no’ or
perhaps the question is not clear
in the first instance.
Personally I’ve known many
people achieve 99.9% of their goals – most
things are possible with realistic
expectations.
JUSTINE - ON
BEHALF OF THE EXECUTIVE COMMITTEE |