I missed out on an outing last week. My family went to eat at a restaurant; one I’ve been wanting to visit for years. Last time we went there I was pregnant. My daughter is four and a half. I wasn’t invited to this lunch last week. I’m not upset about that; it was in the middle of the day so I was in bed. They’ve heard ‘no’ from me so many times. I’m always resting at that time- my pelvis and abdomen racked with pain and cramps.
I’ve missed out on making so many memories, so many special moments with my children.
I try to focus on the fact that I’m here though; that I’m alive. So many people are suffering with terminal illnesses and dying young, not getting chances to do anything. I am so, so lucky.
Yesterday I had my second epidural steroid injection in my left lower lumbar. It doesn’t help my pelvic pain but it does relieve the numbness, tingling and discomfort in my left leg and hip caused by my bulging disc (L4 & 5) and spinal deterioration.
When I started writing this I was still incredibly groggy. Now, the next day, the drugs have worn off and I am aching like crazy; it’s always a rough couple of weeks and then comes some sweet relief. However small, it’s something. My pain management doctor says that I can have an injection every three months however the steroid can lower the immune system and as I am very susceptible to infections it is a risk.
I’ve been thinking a lot lately about my expectations of people. I had to leave at 6.15am yesterday; my husband Mark drove me so my two stepsons got out of bed by 6am and sat in the living room. The iPad set up with my daughters bedroom camera on so they’d be there for her when she woke up. A twenty year old and a fifteen year old - two ages that don’t do well with early mornings. My daughter, Isabella, hasn’t been waking up till approximately 8am recently so I wasn’t worried. I was sure my husband would be back before she stirred, Turns out she had a nightmare at 6.25am. Her brother got her, brought her downstairs where she received lots of kisses and cuddles and was happily coloring and watching Daniel Tiger when my husband returned. After that, our housekeeper came to babysit for a few hours while Mark returned to Santa Monica to collect me. In the afternoon, Grandma arrived to take over and then Mark's best friend dropped by to take Isabella swimming.
I thank everyone profusely, sometimes three or four times each. I am always so grateful but also feel like I don’t deserve this love and help. I apologize for needing them, feeling guilty that, once again, a medical issue is the reason I can’t do it myself and that I’m taking them away from their own lives.
My daughter was very standoffish when I came home from the surgery centre. I cautiously shuffled into the house; holding my husband with one hand and the wall with the other. I was very groggy and dizzy. Usually she runs to me but today she didn’t want to hug me. I know when she gets like this then the best thing to do is respect her feelings and just tell her that I’m home and I love her.
Last night while I was putting her to sleep she asked when the ambulance was picking me and how long would I be in the hospital this time. “No ambulance. I’ll only be there for a few hours then I’ll be home” I told her. I could tell she didn’t believe me. Even at four years old.
Too many times she’s experienced me going in for one night and it turning into eight.
The stress this puts on her is heartbreaking for me. As her mother I’m supposed to protect her.
But I can’t protect her from the fact she has a mother that suffers from chronic pain and illness.
It is part of my everyday life, so it’s part of hers, It’s part of my entire families. Most of our life right now is moulded by it.
How much of my life is defined by my illnesses? Am I Mark's sick wife? Isabella’s unwell mother? The boy's poorly stepmother? How many of my parent's friends open their conversations with them by asking how I am?
Going back to my school assignment days, I looked up the definition of identity. It is described as ‘the set of characteristics by which a person or thing is definitely recognizable or known.’
So, us in the chronic illness world ask ourselves, how much of ‘us’ is defined by our illness/s?
I know in my heart that I am more than my pain. I am a daughter, a sister, a wife, a mother, a stepmother, a cousin, a niece, a granddaughter, a friend. I have the most incredible family, both immediate and extended.
When I visit my family in England and I rush towards my cousins and we hug and kiss and jump around at the fact we’re together (one of my favorite things in the world) I know that’s because they love me for who I truly am. Hopefully my personality, my sense of humor and my love of family. I pride myself on being a Christian; a kind person who wants to do good and who doesn’t judge anybody on their color, their religion, sexuality, gender or race. I want people to be compassionate and understanding to people they don’t know or understand. It's ok to not understand everyone or their way of life- it's not ok to hate it.
I am trying to use my illnesses and pain in a positive way. If my rambling thoughts help one person to feel less alone in their fight, then I have done something good.
Finding Invisible Wave has been fantastic for me. It is definitely giving me something to focus on and to put my pain into use. I am very fortunate in the fact that I don’t have to work for a living and I love my role as a mother and wife. Sounds old fashioned, but creating a beautiful home and cooking and looking after my family is something I truly love doing. However I know as Isabella gets older and goes to school full time next year I will have more time on my hands and I will want to carve out something for myself.
I have always loved writing and it is helping me in so many ways to put my thoughts on paper. As Invisible Wave grows we are hoping to be able to change health policies and the way that the medical system deals with the 18-35 year old bracket of people suffering from chronic illness. I am passionate about doing all I can to be a part of this movement.
Anyone who’s having a bad day; who’s feeling depressed that they can’t get out of bed today or make it to the store because they’re hurting too much- remind yourself of everything you are and what you are. If not to yourself, then to others. Remind yourself of the fact that you’re here on this earth for a reason. You are more than your pain. You are someone. You are loved.