One thing about having chronic illness, is I get bored, over the years, of trying to explain to people the extent of it all. How much my life is different to “normal” because of the pain.
It gets tiring, trying to get people to understand, when I know they probably never will… so I don’t bother much, any more. Even my family; my worst years have all been after I moved out of my parent’s house, and my siblings were already gone when the problems started at lower levels.
Here are some things I (hardly) ever say, when people ask me how I am:
I don’t know if I will ever stop feeling guilty for having children, when I already had three pain diagnoses under my belt.
I am scared that I will seriously hurt myself during a cluster one day, if James isn’t around to stop me. I’ve made my head bleed before, bashing into a brick wall.
My migraines aren’t just a really bad headache. In addition to the pain, the noise sensitivity, the light sensitivity, I also get nauseous fairly often, dizzy almost all the time, and I shake like a leaf. Walking anywhere is hard. The walk to school to pick up Georgie is horrible and only possible with drugs.
I don’t know if I can keep all the balls in the air much longer… My blogging, which I love. My work, which I enjoy. The house is already a mess! I’m considering cutting back on work to almost nothing, until September.
No, it wouldn’t help if I just tried stopping taking any medication I am on. It’s not the drugs making me ill, they are the only thing that help me be able to leave the house. I wish I didn’t have to take them, the side effects can be a bitch. Drinking water isn’t a cure all. Neither is a specific diet. I’m just ill.
The reason I don’t drive isn’t because I never learned… I stopped right before I could pass. Because I’m terrified I will hurt someone if I get behind the wheel again. I gave it up because I was either in too much pain to be alert and too dizzy from my head or the meds that were supposed to help. I messed up tests because of it, and realised I had to stop. I feel really guilty that James has to do all the driving but I’m too damn scared.
Sometimes I worry the kids will get hurt because I’m too ill to be in total control all the time.
Every time Georgie gets her own snack after school, and sorts one out for Lydia at the same time, I feel both incredibly proud and horribly guilty. Or when she fills a glass of water for me when I’m lying in bed. Or when she does anything that is effectively looking after Lydia while I’m ill. My five year old shouldn’t have to be a carer for her sister, or a carer for me. I’m so proud of the compassion and love she shows in her actions but feel so awful that I’m failing them both as a Mother.
I feel like my brain doesn’t work properly. I’m broken.
I might nod and smile when people tell me they get the occasional migraine, how awful for me to have them chronically, but it is so much worse than the odd one is. A typical week for me lately is one or two migraine days, a recovery day where I am exhausted and feel basically hungover, then maybe a “good day” where I just have a medium-ish or bad tension headache, and then another migraine hits. I barely recover from them before another starts. It’s exhausting and depressing. Some days I have really good days where I only have a mild tension headache! My chronic pain never ever stops completely.
I can’t remember the last time I was pain free.
I have lost so many friends because I’m flaky. I didn’t have many to begin with.
No matter how often I answer the question “how are you?” With “I’m fine” or “all good” I will always be lying. I am always in some level of pain. I am always exhausted. I am constantly scared of how long I have in a coherent state before my next “bad spell”.
I spend my days doing everything I can to ignore the pain, to not acknowledge it, in an effort to get some work done or make it easier to bear. When I stop pushing it away, when I’m too tired to try any more, when the kids are in bed and I can just stop, it overwhelms me like a tidal wave.
I feel like a bad wife. I feel like a bad Mum. I feel like I am failing so many people all at once.
I don’t think I will ever stop feeling guilty. Even if when I see the Neurologist in March they manage to help control it better, I don’t think I will be able to stop feeling guilty over the things I’ve missed out on, over the times I’ve let people down, over the amount James has to do to compensate for me being so ill, so much.