I think it is finally settling in with my co-workers and close friends that I will never be completely well. I have good days, I even have nearly “normal” days that feel like I did before I got sick, but those are not my “normal”. Those are my “I feel so amazing I could jump and scream and cry!” days. My “normal” is stiffly shuffling to the shower every morning, if I have energy for a shower, downing a handful of pills at breakfast, taking prescription doses of ibuprofen to manage the day’s aches and pain, or Tramadol or Tylenol #3 in ibuprofen won’t cut it. Making it through my work day to come collapse at home in utter exhaustion, no cooking or cleaning after work…
I know I’m not nearly as sick as a lot of people with other chronic illnesses, and I am thankful for that, but I don’t have the life on a completely healthy person. I never leave home without my pill boxes, pain meds of a few different strengths… I have to think about how far I park from the door, how many steps am I going to go up, what sort of seating is available.
There are nights when I’m in a bad flare that I can’t sleep in my bed, I can only alleviate the pain in my knees and hips by carefully arranging myself in a recliner with pillows propping up my bad joints and heating pads placed strategically.
I know I’m fortunate to be able to live with the level of normalcy that I do, but I am not in denial about the changes this disease has brought about in my life. I think those in moderate proximity to my illness are beginning to see it as well, and to understand that my ‘normal’ and theirs are very different. I’m grateful for their understanding.