I’ve just finished dinner and I am struck with an awful pain in my bowel. Why is anyone’s guess, could be what I ate, could be I am over-tired or could be my bowel just plain hates me today. My bowel doctor once described my bowel as being like that of a 2-year-old throwing a tantrum – you never know what will set it off. The bowel pain, literally diagnosed as irritable bowel syndrome in the absence of any better diagnosis, likes to tag team with my endometriosis pain along with pain from adhesions that cover my insides from my 30 or so surgeries I’ve had fighting this disease.
The pain doubles me over and brings tears to my eyes and for someone who lives in chronic pain daily it takes a lot to push me to the point of tears. I have a hot bath to ease the symptoms, sneaking into the bath while my son goes to sleep and hope it doesn’t wake him. I feel better while I am immersed in the heat, as soon as I am out and dry the pain comes back almost instantly.
I curl up in bed with a hot water bottle and take some painkillers and watch TV to try and distract my mind. My eyelids feel heavy and I think to myself, “Yes, I will fall asleep soon.” How very optimistic, yet very naive of me! As I lay watching Netflix on my laptop the pain in my legs starts thanks to a poorly-timed relapse of fibromyalgia. I change positions, elevate my legs, shift the hot water bottle around and still no relief.
By this time my husband has fallen asleep so I sneak out of bed like a stealthy cat burglar and head out to the lounge. I get myself a fresh piping hot heat pack and start all over again. Shifting endlessly to find a position that is comfortable and that I hope I may just be able to doze off in. Then the pain in my legs begins to throb like a migrainein my lower extremities, I feel like I am climbing the walls, I don’t know what to do with myself. I can’t handle the pain and feeling like my legs have tiny aliens in them trying to claw their way out to the surface.
The house is quiet and by this stage it is 1 a.m. The more desperate I am to sleep the more the frustration builds until finally I decide I must have a hot shower to ease the pain. I feel guilty at the prospect of waking my husband by showering in the ensuite but figure it’s better than waking my 5-year-old. Meanwhile all I can think about is having to be up in five and a half hours to go to work and how am I going to face that and be productive?
My husband half wakes and asks if I am alright, I whisper to go back to sleep and that I am sorry for the noise, then I stand under the glorious heat and finally get some relief. My head and my eyelids tell me I am ready for sleep. I can barely stay awake in the shower but stay for a few more minutes until I am convinced I can lay in bed and finally drift off to the land of sweet dreams. And I do, for a few hours, until I wake because when I toss and turn in my sleep the pain wakes me up. Every night there is a constant fight to not open my eyes and acknowledge the pain. I will my eyelids shut, adjust and drift off again until the next time, and the time after that and so on until the alarm sounds at 6:30 a.m.
I lay in bed after shutting the alarm off and talk myself up like the coach in a boxer’s corner, “You can do this,” “Just move, the first step is the hardest,” “You can’t have another day off” and so on. By the time I’m on the train I am awake and resemble somewhat of a human being, by my second coffee I am capable of human interaction. But I feel like I have already fought a championship match and it’s only 8 a.m. with my whole work day ahead of me.
It feels as though time stands still in the moments of pain, the seconds pass like minutes and the minutes feel like hours. Sat at my desk I have a hot water bottle on my legs to ease the aching, but I overheat and feel sick. I turn my fan on only to switch it off again because the mere feeling of the wind on my arms hurts thanks to the fibromyalgia. I try and focus and think I am doing a stellar job until I read back what I have just typed and the words don’t make sense. I feel as though I am losing my mind. I know what I meant but why did my fingers type something completely different? The brain fog strikes again.
Things I am so sure of become questionable and all of a sudden my confidence is rattled and I feel so confused. By the time my work day finishes it’s straight to school pick-up, then homework, housework, dishes, bedtime routines and some more work.
By 8 p.m. I am shattered and feel like I could sleep for a week, but that’s just my body’s cruel trick because despite how tired I am I know that evening’s events will be like “Groundhog Day,” bound to repeat itself until something bends or breaks.
I try and squeeze in quality time with my son, but the ongoing lack of sleep means I’m more impatient than normal, quick to temper and struggling to find the energy to be the fun mum I want to be. I think to myself, is this life now? Is this how every day is going to be? And if it is, what kind of life is this?
But the answer is simple, it doesn’t matter, this is the life I have, the cards I’ve been dealt and no matter if I get better or worse the only thing that is in my control is how I react, cope and manage my emotions.
The physical pain may never lessen but I can choose to remain positive, to look forward, not back, to not let pain or illness beat me but instead let it drive me to be the best version I can be of myself despite the challenges. What I can do is show my son it’s OK to be vulnerable, to have emotions and to have bad days but no matter what, you don’t give up or give in, you keep fighting and you keep pushing on.
The best thing we can do as people with chronic illness is turn our adversity and pain into something positive, turn it into determination and inner strength, support one another and never lose hope. So if you are having one of those bad pain days then just take a deep breath, know you are not alone, take the day or night minute by minute, hour by hour and before you know it you have made it through to the other side.