There was a time when a sudden change in plans was rather exciting for The Chronic Pain Couple. Before we experienced life with chronic illness of course.
One winter, we were on a train from Berlin destined for Prague that broke down. The trip should’ve only taken 5 hours but when the train came to a halt we were forced to make an 18 hour detour so arrived in Prague in the middle of the night. It was a stressful experience but also exciting as we shared food and stories with other stranded travellers.
Planning life with chronic illness is difficult and changes to those plans aren’t at all exciting.
Do we plan for the worst and get excited if we achieve anything at all!? Well, that would just be limiting and almost feel like giving up, right? We shouldn’t plan big projects we can’t follow through with either due to our health and deal with constant disappointment.
Don’t worry, this post isn’t just about realistic goal setting. In fact we’re all about practical tips here so below we share with you the most important questions to ask yourself and your partner to ensure good life planning with chronic illness.
What we share below keeps us feeling optimistic, not overstretched and content with the plans we make and the goals we set and achieve. Planning is crucial to strong relationships in difficult circumstances.
Do your dreaming on good days and planning on bad days!
Your outlook, strength and capabilities on days when you’re coping and days when you’re experiencing strong pain is very different. It’s good for your soul to dream, plan and be hopeful when you’re feeling good.
Those good days aren’t the time to work on your budget or speak to your boss about your hours though. Always plan your working capabilities and long-term goals when you’re experiencing pain.
Often when I have a good day, I feel like ringing our receptionist and telling her to double my client caseload or telling Johann I’m ready to renovate a home or have another baby. 24 hours later I’m bed bound hoping I’ll have the strength to cook dinner.
Are you comparing?
Are you in the rat race of never-ending comparisons? We’ve all compared ourselves to others but the problem is there’s no end to comparison and there’ll always be people who have more than you, are more beautiful than you, more capable than you, healthier or richer than you. When you’re chronically ill, it’s easy to envy those who are busier than you too.
You’ve got to shake the comparisons if you want to plan a life that’s true to yourself, rewarding and manageable with chronic pain. Forget the people who are well. Heck, they could drop down tomorrow, noBODY is unbreakable. Do those around you have more than you? It’s time to think of those who aren’t in your immediate circle who are on the streets or fleeing their country with no possessions and family.
As Johann and I plan our year ahead, we deconstruct our goals. You and your partner should also talk about your motivation for your goals and what you’ll gain from them. Often when we reflect on those less fortunate than us, the goal posts change and we become less worried about things that only serve our status or bank account.
What is most important to you?
This is a vital question Johann and I ask each other before leaving the house together on most occasions. Chronic pain restricts how long we can go out for and what we can do. This can be a real source of angst for couples with chronic pain. You know what I’m talking about, the fight you have when someone’s disappointed the outing isn’t going to plan. But hang on, did you actually talk about the plan?
You don’t have energy or time to work out what you both need on the fly. Before going out together, ask each other, what is your priority for today/this outing? You’ll continually be surprised by each other’s different needs and expectations!
Recently Johann and I forgot to ask this question on our way to a local park. We began bickering about the plan and soon realised I had agreed to go to the park with a plan to have breakfast on a rug while Josh our son played. Johann had planned to walk by the river near the park as a family. My pain meant we weren’t able to do both of those activities so we spent time adjusting our expectations and making plans when we should’ve been enjoying our time out together.
You can easily avoid those situations by discussing your needs and expectations with each other before leaving the house.
What will you regret?
Because of illness, it’s likely you can’t achieve every hope and dream you once had before your health struggles.
You can ensure that you dedicate your energy and resources to the right goal though if you ask yourself, in 20 years time, what will I regret not doing?
Whatever that answer is, start to make that happen today.
What will change?
Finally, if you’re working toward a goal right now, ask yourself what will change when you achieve the goal? You could be working towards something that’s difficult to achieve with chronic illness and may in fact have a limited effect on your life.
Do you find yourself setting goals to purchase a newer car? Won’t the car still just get you from A to B?
With limited energy, focus your attention on your most life changing goals that will impact your relationships and heart and make new memories.
Are your goals achievable?
Oh, I can’t help but touch on being realistic, sorry!
Speak with your doctor or specialist about expectations regarding your family, work and social life. It’s important to gauge what’s normal from someone who sees a lot of people with your condition.
Finally, when living with chronic illness and pain you’re going to be distracted, hurting and weak. Be patient with yourself and set achievable goals so you enjoy feelings of achievement.
How do you find goal setting with chronic illness? Will any of these tips change the way you plan your future with your partner?
With love & pain,
The Chronic Pain Couple.