This last 16 months, since I was diagnosed with Lupus, have been some of the most frustrating of my life. Although, there is now a known cause for my episodes of exhaustion, my headaches, joint pain, muscle pain, even blurred vision and miscarriages, the calm has not arrived. Usually, for someone who has suffered a long illness, a diagnosis brings relief. I can not say this is the case. I have been given a diagnosis, but I don't fell I have been given much else. I am supposed to stay healthy, get exercise, and try to avoid getting any cold, flu, virus or other infection which could aggravate my immune system. I also should get plenty of rest, and avoid stress. All of this is easy for a stay-at-home mom with toddler twins.... oh wait, that would be if I lived in an alternate universe. In this one, it seems almost impossible. Most days, I feel blessed to have made it until my wonderful husband walks through the door.
The past few weeks, months even, have brought a deepening exhaustion. I've taken up coffee. I never really drank coffee before. I tried it in college and became so wired I could not study. All nighters were useless. I do drink soda, often two or three a day, but in comparison to a good cup of coffee, the caffeine doesn't add up. These days I am at two to three cups of coffee to make it through the day. I sleep 8 hours a night, and still find it difficult to wake up, let alone get out of bed. I eat well, get a bit of exercise and plenty of sleep. It doesn't seem to help. The doctors solution is medication. I'm not ready for medications and their list of side effects, not to mention the increased risks they bring.
The most difficult thing about Lupus is convincing people I have it, and that it can be devastating. Having only been diagnosed in the last two years, friends and family are still learning about Lupus, and what a Lupus diagnosis means. For the most part, my Lupus flares have been mild to moderate. I am always worried that they will get worse, and not taking the medications will no longer be an option. I am always worried that I will become so ill that I will not be able to care for my children. Some days, I feel like I don't do everything I could for the Snuffins. They would definitely like more trips to the park, more time playing in the vineyard, or more rounds of 'Break the Mama'. My exhaustion has already had a negative effect on the state of my home.
I get the impression sometimes, that people see me as lazy or selfish, because they don't understand the extent of the illness. This is the most frustrating part. I want to be one of those people who claims that other peoples opinions do not matter, but I am not. I don't validate myself solely on the opinions of others, but as most people, I want those opinions to be positive, to reflect the reality of my condition and personality.
My flesh has been very weary of late, but my spirit is optimistic and guided by the Father's will.