Belinda: getting needs met

[Guest guest]

Belinda;

Once you're told you have something terminal it would be ABNORMAL to not

think of what dying would be like. Of course, most of our relatives and

family will make it something that they'd rather not speak of (Ostrich

syndrome), but we need to, and while we still can. I have put it in

writing and instructed my kids on how I want to die. Stipulating at which

point in time I no longer want the intrusion and pain of heroic life saving

measures. I'm a flower child of the sixties and to this day see nothing

wrong with the responsible use of drugs to ease the pain of living. It is

related to living, I do not believe death is painful, just the parts

leading up to it. Pain killing drugs are humane, pain is damaging, I don't

want a buzz, I'd just like not to have the intrusion and life sucking pain,

because it makes me cranky, and tired and clouds the nice thoughts I'd

rather be having. Talking about my fears and the decisions I need to make

now are rarely possible with family and friends, that's where a therapist

is a wonderful soothing prescence, someone who allows all your thoughts to

expressed, that process makes it smaller manageable and aknowledged.

Too often this North Amercian culture conditions women to be treated with

less respect when it comes to suffering. For one thing girls here are

supposed the make 'nice' be pleasant no matter what (encouraging you to

suspend your feelings to please those of others), and perplexingly also be

more demonstrative (hysterical) when it comes to emotions. This is a very

counter-productive mindset. It conditions people to think nothing is very

wrong with us when it is and requires us to emote only on queque (well, not

me, I'm Eurotrash). If you are sleepwalking and having blackouts (can't

remember how I got there), you are most likely sleep deprived. Doctors are

very reluctant about sleep medication (could become

dependant//addicted). Insist on getting some help getting sleep. Two

years ago I walked into my therapist's office (he's an MD) and told him

simply he could give me something so I could sleep or I would likely slit

my wrists. Unlike the more subtler discussions with my GP etc. this got

results. I've been taking sleeping pills since which work. I take no

higher dose than two years ago, and yes, I am dependant, because I cannot

function when sleep deprived (especially cognitively). I'm terminal for

Pete's sake I don't think possible addiction is a worst case

scenario. Since they expect drama, you may have to be dramatic, and

insistent. Don't buy the anti-depressant bull either, those never did me

any good, and have worse side-effect than the sleeping pills. If getting

adequate, quality sleep does not improve your well-being, then perhaps you

can ask a neuro to consider anti-convulsants (sleepwalking and seizures can

be one and the same). Don't make nice, tell them exactly what you want and

insist someone monitor your progress (it may take numerous

adjustments). It is your body, your life and your death go for the 110% of

what is possible, that is dignity, quiet desperation is for wussies.

When I was actively looking for my new physician, I prepared a handout of

what I wanted from a GP, I knew he would work out because he accepted the

whole list, here it is, maybe someone else can use it:

1. someone who truly believes I am ill and not feigning

2. someone who ccan take into account my history of dance, and training as

dance therapist, counselling and practicing yogal since birth

3. someone who takes into account I took no prescription medications from

age 22 until mid-thirties and only in dyer need

4. someone who takes into account that I tried and remain loyal to natural

healing practices, when it is effective and low risk (early years with

fatigue used Chinese herbal teas including the dreaded ko-buch-hah mushroom

which fermented in dark tea on top of my fridge for the two years years I

was loyal to it)

5. someone willing to liaise with a rehab worker on my behalf (services out

of reach without a GP and a least a tentative diagnosis which supports

needed resources, equipment and medical therapies not otherwise covered)

6. someone who will be sincere and direct

7. someone who will involve me and treat me as a person not a patient

8. someone willing to do follow-up and monitoring, not just crisis management

9. someone willing to discuss with my therapist when there are doubt about

my mental status or about the past four years since he was the one

monitoring my symptoms and meds consistently

Of course you'd have to change to suit your history etc. but you get the

idea. Be clear what you need, and insistent. So far this is working very

well for me.

aletta mes

vancouver, bc Canada

web: http://aletta.0catch.com