by Samantha Key of Femma and Belinda Boardman
The pain is constant Just because it is not visible or audible does not mean I am not in pain. On the days I am not keeled over or verbalising my pain, I am still in pain. It is like white noise, sometimes I can distract myself from it and take my mind off it, but it never goes away.
I am mentally and physically exhausted The exhaustion that comes from dealing with the condition is almost like a job in itself! You have the schedule, time to prep the food that you know won’t aggravate your symptoms, time to be physically active, time to research the exercise that is best for my condition, time to take my medications, time to sit still with a heat bag and time for regular breaks throughout the day. Sometimes the pain is so disruptive to my sleep that even though I have spent 10 hours laying in bed I feel like I haven’t slept at all.
There are a lot of expenses involved Money I would much rather spend on a new outfit, goes to doctor’s appointments, specialists, psychologist, scans and medication. I lose out on income for days missed from work or the shifts that are too many hours for my body to handle. Sometimes I have to choose between medical treatment and food. The added stress then has a negative impact on my mental health.
It’s not fair to compare me or my situation to anyone else I feel the constant pressure to “keep up” with everyone else. It happens in the workplace, especially where someone is employed in the same role. I am always honest and open with my skills, needs and abilities when applying for a job, so please do not punish me for it down the track. It also happens in my social life, feeling like a bad friend when I have to cancel plans or miss out on the big events I have been looking forward to like birthdays and weddings. I am grateful that my friends have other friends who are always able to attend but if I can’t it is not a testament to how much I care for you.
Some things that help Moving does wonders for my pain, even though it is hard to get started, my body always thanks me after yoga, pilates or a gentle walk. Reducing inflammatory foods, as much I want to gorge on crisps and cheese toasties on the bad days, making them a sometime treat does my pain wonders. More than anything I want to feel seen and heard. The validation I get from my friends, family and co-workers that my pain is real. I appreciate the empathy and being asked how they can help. Most of the time I don’t need any physical help, the acknowledgement does wonders for my well-being.