Dear Fellow victims of the Wolf,
It has been several years now since my health problems were diagnosed as being SLE, and in that time much has happened. Although I am still on very conservative medication in part, I am sure, because I had to take early retirement an so can rest when needed, I seem to have learned many things about Lupus. Little of this is original but some insights may be useful to others.
First, from the doctor and pain-specialist nurse.
1. “You are not going to get better.” This was a tough one and not 100% true as I know from having partial remissions. It is important for me to accept this so that I can enjoy each moment. I have Lupus; some five minutes are better than other five minutes; it is idiotic to expect to ever be free of an incurable disease and, contrary to what some believe, Lupus is a fatal disease. I hope it does not kill me until I am 124 years old.
2. “It is palliative care.” When I reminded a doctor recently that palliative care really means “keep the patient comfortable till he’s dead” he was a little taken aback by my bluntness but had to agree.
3. “It is a matter of quality of life.” My quality of life may seem wonderful to some and so terribly restricted to others that euthanasia might spring to mind. The truth is that as long as I believe I have a good life things are fine.
4. “It takes more medication to push pain down than it does to keep it down.” Pain is best avoided completely. Take enough medication to keep the wolf confined; if the wolf escapes it can find other wolves and then it is much more work to get them back in the kennel.
5. “Take the *&^% pills!” My attempts to cut back on the pills are simply neurotic and self-destructive.
Now, from my wife.
6. “Time for your nap.” Rest and medication are both necessary; sometimes I have a sick need to pretend I am normal or even Superman. I am not.
7. “You are much easier to live with when you take the pills.” “Did you take the pills?” “Is it time for a pill?” When I am too dense to remember to take the pills that are part of giving me an acceptable quality of life it is good to have reminders.
And a few of my thoughts and reminders to myself.
8. Some days it just seems that my pain threshold is down. On those days if a fly lands on my skin it can feel like a knife.
9. If some relative stranger says, “How are you?” I may answer “Vertical”. If a friend asks I may answer, “Fine, this five minutes.” These oddball answers keep me from lying or, equally bad, from becoming a bore.
10. There are other ways of dealing with Lupus, the wolf that never sleeps, but acceptance of reality works best for me.
Douglas+
It has been several years now since my health problems were diagnosed as being SLE, and in that time much has happened. Although I am still on very conservative medication in part, I am sure, because I had to take early retirement an so can rest when needed, I seem to have learned many things about Lupus. Little of this is original but some insights may be useful to others.
First, from the doctor and pain-specialist nurse.
1. “You are not going to get better.” This was a tough one and not 100% true as I know from having partial remissions. It is important for me to accept this so that I can enjoy each moment. I have Lupus; some five minutes are better than other five minutes; it is idiotic to expect to ever be free of an incurable disease and, contrary to what some believe, Lupus is a fatal disease. I hope it does not kill me until I am 124 years old.
2. “It is palliative care.” When I reminded a doctor recently that palliative care really means “keep the patient comfortable till he’s dead” he was a little taken aback by my bluntness but had to agree.
3. “It is a matter of quality of life.” My quality of life may seem wonderful to some and so terribly restricted to others that euthanasia might spring to mind. The truth is that as long as I believe I have a good life things are fine.
4. “It takes more medication to push pain down than it does to keep it down.” Pain is best avoided completely. Take enough medication to keep the wolf confined; if the wolf escapes it can find other wolves and then it is much more work to get them back in the kennel.
5. “Take the *&^% pills!” My attempts to cut back on the pills are simply neurotic and self-destructive.
Now, from my wife.
6. “Time for your nap.” Rest and medication are both necessary; sometimes I have a sick need to pretend I am normal or even Superman. I am not.
7. “You are much easier to live with when you take the pills.” “Did you take the pills?” “Is it time for a pill?” When I am too dense to remember to take the pills that are part of giving me an acceptable quality of life it is good to have reminders.
And a few of my thoughts and reminders to myself.
8. Some days it just seems that my pain threshold is down. On those days if a fly lands on my skin it can feel like a knife.
9. If some relative stranger says, “How are you?” I may answer “Vertical”. If a friend asks I may answer, “Fine, this five minutes.” These oddball answers keep me from lying or, equally bad, from becoming a bore.
10. There are other ways of dealing with Lupus, the wolf that never sleeps, but acceptance of reality works best for me.
Douglas+