For the past three and a half years I’ve been living with chronic headaches. You might think they’re migraines, but in reality they’re not. As best as doctors have been able to figure out, it’s actually a condition called pseudotumor cerebri. It’s a big fancy name that means my brain acts as if there was a tumor, even though there’s none – thank God! The condition really means that the brain fluid in my head has an elevated pressure and causes pain. At least that’s the gist of what I understand of the medical explanation for this strange illness. All I know is it hurts…a lot…and that life with a chronic illness is full of ups and downs.
Unless I tell them, no one knows that I have an illness. I mean quite literally it’s all in my head, so there are no obvious symptoms that are recognizable by other people. This makes it super hard to tell people, “I can’t today. I’m not feeling good.” Especially my children. They see me looking fine from the outside when inside, I’m in pain by a thousand. Some days. Other days I actually do feel fine. It’s one of those things – some days are bad, others are great! The phrase “one day at a time” has never meant more to me.
In the big picture, my headaches are under control thanks to medicine, vitamins, and being more mindful of everyday activities. In the small, everyday picture, though? I have phases of intense pain and moments where I’m rendered useless. Every couple of weeks I have a streak that lasts a couple of days where I just have to wait out the pain and accompanying feelings of lightheadedness, weakness, and overall yuckiness. It’s not fun. It interferes with daily life – being a mom, wife, business owner, and every other role I play. And it’s incredibly frustrating.
That mom part is probably the toughest, though. It breaks my heart every time my children see tears roll down my face because I’m in pain. Or each time I have to say, “I can’t now, baby…mama doesn’t feel good.” Or when they in turn pick up some of my responsibilities since I’m lying on the couch.
To avoid having this become one big pity-party, I will say that life with a chronic illness is not impossible. Though many times I have feelings of worthlessness and do immerse myself in those feelings, I work to get myself out of it. I have support from family and friends and actively work on my own mind-set. I rest when I need to, I delegate home responsibilities when necessary, I take advantage of the good days, and I accept the bad ones. It’s all I can do really.
Do you know someone with a chronic illness? Or do you suffer from one yourself?
All photos © Melanie Edwards/modernmami™
Melanie,
I know this story all too well. This is my story. I live with an Chronic Illness called Rheumatoid arthritis (Also known as an “Invisible Illness”). I know the pain, guilt and depression all too well. Thank you for this post. It’s nice to know someone understands what it feels like to have people not believe that you are as ill as you feel because you “look” well. It’s maddening. I am learning to take each day as it comes and to not be too hard on myself for not being the same mom, wife, employee etc. that I used to be. This is my reality. Thank you for this.
It’s so hard. I understand. I forgot to mention the depression that can come along with it. Hang in there, Shameka.
I am sorry to hear that Melanie, but I am glad to see that you have a lot of love and support 😉
I suffer.from chronic migraines, severe rheumatoid arthritis, and fibro; so I completely understand how it is some days.
Wishinging you more good days than bad 😉
Oh my. That’s a lot to bear. Thanks and wishing you the same.
I am sorry to read this. Many of us suffer from a chronic illness and/or pain, and it can be very difficult. I don’t have little ones as you do… I can’t imagine.
I very much believe in alternative therapies. I love my acupuncturist, and have found her to be a lifesaver.
Wishing you all the best.
Thanks so much, Jacqueline.
It’s very hard some days but we work around it, it’s all we can do. Learning your limits it’s very important at least for rheumatoid arthritis and fibromyalgia. Even if you’re having a very good day, we need to take it easy because if we do too much then the next day is miserable. Good luck Melanie! I hope you get to a good balancing act with your illness and able to control it somewhat.
You’re right, it’s all we can do. And yes – even if we have a good day, the next can be miserable. It’s a learning curve to find a good balance.
I’m not happy that you have a chronic illness but am very glad that you have a diagnosis. I was worried about you for a bit, Mel. I’m so happy it’s not a tumor.
Do you have any idea what brought this on? I saw a commercial from one of those ambulance chasing law firms trying to link this very condition to birth control. Watch out for those vultures?
Thanks. In some ways, it’s nice to have an answer. I don’t have any idea what brought it on, honestly.