It is my responsibility to manage my porphyria. This is not to take away from all of the support that I get from my beautiful wife; I don’t know how I would manage without her. But, the bottom line is that it is up to me. If I don’t eat enough of the right foods, avoid triggers, exercise, keep the air filters clean, etc. then all her help is in vain.
There is no excuse for giving up because it is too “hard” or “not fair”. I would love to have a drink of Sweetwater IPA, some dark rum, or a great pinot noir; but, the then I would be really bogged down for a few days. I would really like to quit work and concentrate on feeling better; but, then I would have to rely on handouts.
Anyone with porphyria has to make these choices. Can they fight it or just give in and suffer the consequences…that is the question. But, the consequences are not just on the person with porphyria; the resultant mess affects family members and friends, too. It is heart rending watching a family member with porphyria not eat properly, get tattoos, use hair dye, etc…the resulting pain and suffering is mind numbing.
One foot in front of another. One day at a time. Life is much better when staying on top of this disease.