It's perfectly acceptable to be an individual
01/10/2010
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.
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
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