Mornings are bittersweet for Elizabeth Christy.
With each sunrise, it's a new day with her 4-year-old son, filled with the joys of good morning smiles, hugs, eating breakfast and dressing for the day.
But it's also the most arduous two hours of the day.
The Sterling mother suffers with debilitating pain stemming from autoimmune disease and fibromyalgia – and as any mother knows, there's no sick days.
You get up. Fight through the pain. Wait for those few moments you can rest. Put your child to bed and start over.
Christy explains it like this:
“After putting him to bed, I often have to leave his room and immediately lay down in the hallway and cry; exhausted and overwrought with guilt. 'I'm not doing enough. I can't do enough. I will never be good enough for him.”
For Christy, her disease is two-fold. The chronic pain led to depression and anxiety along with a host of other problems, including narcolepsy, which she was already struggling to overcome.
It was a struggle that for years she believed she faced alone.
“Nobody believed me. That was the worst part,” she said.
A child's point of view
The guilt of not being able to do all she wanted with her son overwhelmed Christy.
As a child, Christy watched her mother suffer from the same illnesses. She remembers being angry and confused.
To help her son understand, Christy, a blogger who chronicles about parents with chronic pain, began writing a book from a child's point of view – a way to explain to her child what his mother was experiencing.
That book, “Why Does Mommy Hurt?,”was released this month.
As soon as her son began to talk, Christy worked to explain her condition.
“I was using words that he could understand like 'mommy's sick or mommy hurts some times.' He would be really sweet and bring me teddy bears, but other times he gets angry or frustrated saying 'mommy I want to go to the playground' and I would have to say 'I'm sorry Jimmy, I can't take you to the playground. I'm sick.'
“And it breaks my heart, but it's something I just can't do, especially when I'm having a bad day.”
In the book, Christy describes how mommy gets angry or sad, but it's not the child's fault. There's also parts in the book where the boy gets angry, too.
“I just didn't want him to go through the same thing that I went through,” she said.
It's difficult to explain to a child what chronic illness means, especially when kids relate being sick to something easily overcome, like a cold.
“Chronic is hard to explain to a child. I've been sick longer than he's been alive,” she said.
The invisible disease
Fibromyalgia is often called the invisible disease because there's no test available to confirm the diagnosis, according to Dr. Gulrukh Saleem, a Loudoun County rheumatologist.
Patients often suffer from an increased sensitivity to pressure because of their hyper active nerve endings. They usually experience major fatigue, have problems with memory, anxiety and depression.
“It can be hard because sometimes people don't believe it to be a diagnosis. A lot of patients will have depression and anxiety. It's really hard for them to do anything. A lot of my patients will complain that they really have to push themselves to go out and play with their children,” Saleem said.
Christy was diagnosed with autoimmune disease and fibromyalgia at age 25.
A former Georgetown neuroscience researcher and now IT professional, the stresses of her job along with motherhood and her illnesses inflamed her conditions.
The pain started with raynauds, a condition where your hands and feet go numb. Then came mind-numbing joint pain followed by depression and anxiety and thoughts of suicide.
“I think with chronic illness, being a mother, it's just so hard. I don't think I have traditional depression. It's a reality. Anyone in that situation would get depressed,” she said.
To make matters worse, none of the medications Christy tried to treat her anxiety and depression helped. It wasn't until she tried transcranial magnetic stimulation, which is also used to treat migraines and epilepsy, that her symptoms got better.
“After two weeks I felt like a new person and that's when I started writing the book again … the depression, it's gone,” she said.
The anxiety is still there. But it's manageable without the depression bearing down on top of her.
And there are flareups related to the fibromyalgia, especially when emotional factors, illness such as colds, sleep deprivation or too much physical stress is involved, according to Dr. Saleem.
“They're never free of symptoms, but they'll be better,” Saleem said.
Looking to the future
Christy frequently becomes overwhelmed with questions from friends and family that don't understand the pain she suffers.
“They ask questions like 'Why haven't you had another baby yet? I'm barely surviving now,” she said.
Christy wants another child. And she's hopeful a second pregnancy will go as well as her first.
“With my first pregnancy I went into remission. Sometimes the hormones are good and they can trick your body for a while. I thought I was cured. I thought I was better because I didn't really know what was wrong with me in the first place,” she said.
Christy stayed in remission for 11 months after giving birth.
She also found she isn't alone in her pain and frustration by joining the Spoonies, a group of people that live with chronic illness. The name is derived by theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion ... sometimes having an abundance, other times coming up short.
For Christy, each day is different.
“Being a mother is probably the most difficult job in the world … When I'm sick I still have to get out of bed, I still have to go to work, I still have to do everything. I feel like I'm treading water. The only way that I've found to survive is to just take it one day or one minute at a time. You have to find joy in the little moments with your kids because the pain never goes away. But when you're with your child … you forget about the pain for maybe a minute or longer,” she said.
To order a copy of Christy's book, visit http://www.whydoesmommyhurt.com