Back-to-School with Chronic Illness Part 2
Yesterday, I posted Part 1- about preparing for back-to-school by getting oriented with illness and school goals in order to plan accordingly. It really is an important first step. Moving on from there is creating the actual "Plan."
After understanding what’s happening, my next steps are to find support and schedule.
Enlisting Support:
In planning for anything these days, I have to think of the needs of everyone in my family throughout the day (and my own). I also try to consider who can help me when there is simply too much for me to manage or I am unable to manage much because of illness. My husband is an important ally in this household management. As are close family- my Dad and In-Laws. However, I also think about friends, extended family, school, and professional supports available (including things like paid helpers, ie: babysitters.) I am not always successful in finding the help I need and I try to be gracious and accepting when others can’t provide support. And I also try to be realistic in saying “yes/no” when folks ask for my help. Responding from love sometimes means saying no. I get that part. That said, asking for help is an important part of making a successful plan.
With planning for school, there are often professional supports in the school or with community agencies that parents are unaware exist. Some schools are more accommodating, and other’s less so. A meeting with the school can give you an idea of what’s available. If your child (or yourself) has a medical care team, it could include a social worker. The social worker may be able to connect you with other resources in your community too.
Sometimes, especially during times of "Loud" illness, I have found that it really doesn’t feel like there are enough supports to do everything I had hoped. These are hard days. Once I realize it, I refocus and revision the short term with Loud Illness in mind. Once I get back to a period of Quiet Illness, I can expand my involvements again.
When my my illness is Loud, it does feel like it takes over. For me, there are more appointments. I’m more tired, have more pain, and less energy. Common daily activities are draining. Everything feels extra. Even things that I know will be helpful, like a yoga class. For kids with illness, times when Illness gets Loud may mean that a day at school is exhausting, or they will need a modified schedule because even a typical day of classes is simply too much. Extracurriculars are hard to fit in. For example, they may not want to go to swimming (even though they love swimming.) Emotions may be all over the place. Behaviour & Emotion Coaching skills for parents can be a really helpful compliment to other strategies to manage illness and family life. Being flexible and responding appropriately in the moment are key.
Scheduling:
For me, the schedule is taking into account both the priorities and the routine- who needs to be where and when do they need to be there? What is most important for the day? Making a plan *and a back up plan* (and a back-up to the back-up plan) are essential for my life with chronic illness. To make the base schedule I use a spreadsheet & a calendar. Pen & paper work just fine, though I prefer electronic. I think about my own and my family’s goals and try to reflect them in how we put together our days and weeks. I try to plan 3 months out and adjust each week (and as needed,) as life occurs. You may or may not find this helpful. You may just want to start with a daily routine. Or monthly schedule. Everyone has different ways of doing this kind of organizing.
I have a daily routine that includes everything involved from waking up to bed time. I also have a weekly schedule- to account for my yoga, kids extracurriculars, meetings, appointments, etc. Being able to see the month all at once, is helpful to me, so I have white board calendar on my fridge. Syncing everything- from electronic to white board- is an important task that occasionally gets forgotten. I try to carve out schedule time on Sundays- to make sure everything is up-to-date for the week ahead. Yes, this does take extra time. And I feel like it gives me back time each and every day, so I keep it up.
With a chronic illness there can be a lot of different components. To keep these at the top of the mind is unrealistic for me, not to mention unpleasant. I rather focus on the parts of life that I find interesting and bring me joy, so I have to delegate the logistical stuff to habit, calendar, and apps. What does this mean?
- I set alarms & reminders for vital medical things- like medications, blood work, and appointments as needed.
- I build habits around things I have to do everyday, so that they become a natural part of what I do. At this point in my life, taking my meds twice a day is no harder to remember or complete than brushing my teeth. When I have to take more meds, it is harder, so I accept that and use another tool.
- I go easy on extra commitments during the first few weeks of school while everyone is finding their groove. Same with other transition points through the year or in the midst of an unexpected flare.
- I post the monthly schedule on the fridge and have a shared google sheet, and keep them updated so that both my husband and I know what the heck is going on for our family.
- I use apps like Round (medication scheduler) and just started using Asana (productivity) to keep track and check things off.
Finally, even though I have a lot of plans, and plans C, D, & E, there are times when nothing goes to any kind of plan. It sucks! And it feels really unfair. I get incredibly indignant when it happens... but I know that after having a well-thought out "Plan", the next best thing is simply allowing that moment to be. It will pass. Things may not ever be the same. And having faith that even still, I will figure out a Plan W or Z phase 3, or whatever number or letter we're at, will be manageable. I'm also learning to let myself be justifiably annoyed or angry or sad or brokenhearted or disappointed or whatever, when it happens. Because despite the BEST planning, it will happen. For folks with illness, and those without. And yes, I still have resistance to that "let it be" attitude a lot of the time... hence having a Plan E. I'm working on letting go a little- it sounds really good in theory!
I hope that by sharing what I find helpful, some who are just starting this journey can have a bit of a shortcut to finding their way through life with chronic illness. And others who have felt overwhelmed may have a bit of inspiration. I don’t propose I have all the answers, or that my way is the only way- or even the best way. It's just what works for me and when I've shared with some others, some strategies have seemed helpful to them. I also hope that folks reading this and living with chronic illness in the family can share how they manage and thrive through the day-to-day trials and triumphs, and times of transition. Also, if there are any apps that folks love, I’d love to hear about them, so feel free to share in the comments!
-Stacey