How to make decisions with a rare, chronic illness the mighty severe heartburn while pregnant

When I had reasonable health, I would spend my days making business and personal decisions without much effort. Some might have kept me awake at night, but not many. I never had to think about the physical toll any of my decisions would take. I could walk fast, I could exercise and I could pretty much rely on my body to carry me through thick and thin.

I remember so clearly how jumping out of bed at the sound of the alarm was an automatic, natural response, as was dashing to the kitchen to have breakfast. I didn’t have to think about quickly showering, styling my hair, and putting on makeup. Dressing in a blouse, pants, high-heeled shoes and jumping in the car to head to work was all done on automatic pilot.

Today every small decision needs thinking through. How long can I stand to brush my teeth and deal with my stoma?

What time should I start getting dressed if I want to sit downstairs and have lunch with my husband? If I want to write a blog post, what other activities will I need to exclude from my day?

In my case, the best example would be trying to get out for a coffee to a local cafe. I have to plan to have a super quiet day the day before if I have any hope of going out the next day. Super quiet means no physical activity aside from essential hygiene. On the day of the planned outing, I need to wake up no later than 7 a.m. so I can time my pain medication to be at its maximum benefit by 1 p.m.

The afternoons are always better for me in terms of energy and pain levels. So outings have to be between 1 p.m. and 4 p.m. and can’t be longer than an hour. If I get my timing wrong with planning the outing, I may as well not go. I’ve tried pushing through and the pain and discomfort is just not worth it.

I also have to factor in all the small decisions necessary to actually get dressed so I can get out. The whole process is honestly exhausting. The worst part is, even if I’m successful in executing the plan, the recovery period can be days…all for an hour’s outing.

In my experience, it does require military-style planning which, in all honesty, may take 12 months or longer to execute. My husband and I are in the process of seriously considering my future health needs in terms of housing and long-term finances. Massive decisions are involved when looking at both of these areas. We are giving ourselves a two-year time frame to inch our way towards our desired future.

That involves commencing with researching every single possible option available to us, before starting on any steps involving implementation. The research period includes organizing quotes, making phone calls, internet searches, creating different budgets for various possible scenarios, and so on. Since I’m managing chronic illness simultaneously, the initial “gathering data” stage will take at least a good six months. We have to get this right. My health depends on it.

I may work through things a little quicker than anticipated and that’s a bonus. One thing is for sure, I cannot over-extend myself. Even though much of this work is mental rather than physical, pain causes extreme fatigue and fatigue worsens my pain. Administrative work is tiring and will exasperate my fatigue, which again escalates my pain. Slowly, slowly is the only way to make major decisions and definitely the only way to execute them.

I’m sure I’ll have a thesis written by the time I’ve documented every step by step detail for each plan option. I will at least know what’s achievable and each action item will accommodate my progressive bone disease. My health will be underpinning every decision we make.

With so much outside of our control with chronic illness, we do all need to make one big decision. I’ve written previously about acceptance. I really believe it is a key factor that helps develop a sense of well-being, especially when your body is doing it’s best to try and destroy you.

If we can learn to accept our circumstances we can begin to develop a new way of living. If I got upset every day about my pain levels and how hard it is to move from the bed to the ensuite, it’s just going to get harder. If I acknowledge my pain and adjust all my activities to manage my pain as much as possible, I can begin to move my focus from what I can’t do, to what I can do. I need to prioritize activities that give me pleasure and increase my sense of well-being.

Note: This process may leave you with a list of things that need doing that are outside of your reach. That’s when it’s time to make some serious decisions about out sourcing these activities to someone else. Family, friends or an external agency are starting points to explore options.

Three of those activities are impossible for me on the same day. I accept that. They are 1,3, and 4. I can’t change the food delivery as it’s booked in. It’s a physical task to put the shopping away, but one I love to do. So, changing the sheets and coloring my hair will have to wait until another day. It can’t be the next day, as I need a recovery day from the food shop delivery and my normal daily routine. I can however unpack the food and enjoy a spot of writing while resting.

• For medium decisions, like an outing, plan at least a week in advance. You need to ensure you don’t overdo it leading up to the outing. Work with your own limitations and plan your week’s schedule so you ensure you have done everything possible to make it out.