Managing Life

[Guest guest]

Hi

Initially do not panic! If you want, walk out into the back yard and scream,

I find this helps.

Life at the best of times, without PA, is a choice. Sometimes we get the

balance right, other times life seeps in from under the gaps of the doors

and we are inundated! Prior to PA I had what one would term a " high powered "

job. It paid me lots of cash, a fantastic Company Car, plus two cars at home

in the driveway, a fantastic home and a pet rabbit who I adored. For all

this luxury I was 'on call' twenty four hours a day! The realisation

literally happened overnight! Stuck in a traffic jam in London, with three

mobile telephones ringing, on a summer day. I was wanted in Glasgow, Bristol

and Dover, simultaneously! I parked the car and caught the train home. I

entered MY home, MY kitchen and pondered over this machine that sat on the

counter! I could not recall buying it, I could not recall what it was and I

started to wonder if I was in the right home!

I had a home I never saw, only slept in occasionally. I had a wardrobe full

of designer gear, that I had not chosen, but Designer shops had dressed me

in and I had a pet rabbit who accepted me and this strange lifestyle! I

really thought I had life sorted out, this was it! In reality I had nothing!

When PA erupted, I lost everything. My home, my job, my lifestyle, the

luxuries, PLUS my health!

Bad enough loosing all the material things in life, but loosing your health

as well? I was lucky because I had a man in my life who was logical. He

said, " Gill you have a choice, either health or wealth? " I chose health!

So while you say that your children and husband are your main priorities in

life, in reality YOU are your only priority. Think about it. If you have a

serious flare, are admitted to hospital, what good are you going to be to

your children or your husband then?

Since joining Onelist, it seems to me that patients in America are caught in

a medical 'rat race'. You have PA, therefore you see a Doctor, who

prescribes drugs. In order to receive those drugs you need cash. Therefore

you go to work, to earn the cash to pay for the drugs, which in turn you

hope will keep you at work. So you are now working for the drugs, in

anticipation that the drugs will allow you to work. Sorry its that Irish

Logic again.

Yes I reckon I would also face a large cross-roads if I lived in America.

I would take 'Time Out'. Pack the children off to the relations and let the

husband fend for himself, while you concentrate on YOU! Only you know when

you good hours are. Only you know if and when you need a rest, what time of

the day. Figure out when your good hours are and when you bad hours are.

Then you will have to make serious adjustments. So you might have to go to

bed at 6pm every night, but wake up at 3am. It may take you one hour to get

going, so you can sort the children out. Then you might need a rest, in hope

to energise yourself for your job. Do that for a few hours, take another

rest, before getting up to see the children home from school, husband home

for work and going to bed. It is your condition, your life, you set the

priorities, but you need the TIME to sort out the planning, arrangements and

timetable.

Good luck

Love and God Bless

Gillian