What it’s like

What it’s Like

Blog post by Iris Carden

This is what life with lupus is like:

• I bought a book on how to keep a house clean in 15 minutes per day.  What takes the person in the book 15 minutes takes me five hours and major pain relief.
• One morning per week is assigned to sort my week’s pills.
• Everyone at the pharmacy knows my name.
• Many people who aren’t my doctor tell me my medications are dangerous (they are, but lupus and now diabetes are both even more dangerous), that they know better, natural, ways to cure things that medical science can only manage.  These people fail to acknowledge that before medical science came up with these tools to at least manage my illnesses, people like me weren’t “cured”; they died.
• I go for a walk with my daughter and the dog.  They’re walking as slow as they possibly can, and I am struggling to keep up, pain increasing constantly. I won’t yell at them to stop and wait for me, because a) I’m too proud, not wanting to admit I can’t do it and b) they, also need some exercise.
• The same torn up dog toy has been on the floor for a week.  At least three times a day I tell myself I will pick it up when my body lets me reach the floor.  After a week, I get my reacher tool and pick it up.  I don’t ask my daughter to do it because, once again, I’m too proud to admit I can’t do it.
• I sweep the floor, because again, I want to prove I can do it without asking for help.  I trip on something (ironically, on the frame from around the toilet, that’s supposed to help me get up), and find myself stuck on the floor, tangled in the frame, unable to get up and in extreme pain.  On this occasion, I do call my daughter for help.  It seems she would have rather swept the floor than pick me up off it.
• My daughter is officially my carer.  Since I want to try to do everything for myself, she has very little work until I either fall over and can’t get up, or am actually physically incapable of doing anything for myself.  I still push myself until I have flares and can’t do anything, rather than say I need her to do xyz, because I persist in thinking I can do those things with no ill-consequences. Sometimes, I do get away with doing those things without consequences, and insist that proves me right in my delusion.
• My house always looks like a disaster area, because I am really bad at housework (weak sore joints will do that), but I don’t get my daughter to do it for me, because I want to do it myself.

• I am told I now have diabetes, I have to learn to do finger prick tests, manage new medication, will probably have to change my diet and exercise regime again, etc. I just think: “I adapted to lupus, how hard can it be?” (But my daughter does come to all my appointments to make sure we both know what I’m supposed to do now.)
• I still really resent that a number of years ago, my rheumatologist told me to: “Stop trying to prove you can have a normal life.”