A letter to my Family
I wanted to write a letter to all of you explaining how life is for me living with multiple chronic conditions. I know that sometimes I disappoint you when I am unable to make a trip over the hill or a dinner at night…I am never making excuses. I have developed a coping mechanism to deal with the variety of challenges I have. Right now, my priority is work, and I need figure out the best scenario to allow me the energy to continue to work a regular week. This means I give up a lot from an extracurricular standpoint, and this may seems like I am constantly avoiding certain types of activities.
Think about having the flu, and the aches and pains that go along with that. And then think about all those times you stayed up for days studying for all those final exams… That is how I feel most days. I cope by having a very stringent schedule and I stick to it. Any deviation, like a later dinner, or a full day of activities, break this schedule, and it takes me a week or more to have my body settle back into my norm. So, every decision I make to change my schedule and do activities that compromise this, are well thought out, and I only do what I think I can manage, or am willing to suffer the consequences for.
The hardest part about having the chronic diseases I have is that these diseases are hidden ones, and never affect the way I look from an appearance standpoint. I look healthy and happy and not at all like a sick person. It’s all inside. Believe me, I am very blessed that I don’t have a physically compromising condition, and I am thankful every day that my only burden is RA, Fibromyalgia, Hypothyroid, and Osteoarthritis…These are syndromes, meaning that many parts of my body are affected by them. Chronic sleep problems, headaches, joint pain, muscular pain, so many that one loses track of how it is to feel normal. I don’t know what it means to sleep for 8 hours, and then just wake up. For me, I remember every hour of every night, and just hope that I will get a couple of uninterrupted nights.
So, as my family, I want you to know how much I love you, and how grateful I am to have you all in my life. Please know that when I back out of some activity or leave early from another, it is a hard decision for me to make, but one I do not take lightly. I am so thankful that my work is the center of my life, and gives me such pleasure. This gives me a reason to get out of bed everyday, and enjoyment, all those hours I get to work. Anyway, I wanted you all to know my feelings and hopefully this will explain decisions I make when I decline certain activities.
When was your last flare?