Taking Care of Yourself During the holidays (or big events): post #4 (co-written)

Welcome to the holiday season, from Co-writers @health_and_unwellness and @chronically.undiagnosed92. It’s a time that should fill people with joy, but when you already have to cope with the day to day effort of living with chronic illness, even when things are going well, and the holidays roll around it can feel overwhelming. You may feel that you’re already pushing yourself to your limits, and now many of us will find ourselves responsible for arranging elaborate gatherings and celebrations. I, for one feel a little intimidated.

For me the holidays mean a massive build up of many things, and unfortunately, stress is a major one of those things. 

In Australia, our main holiday celebrated is Christmas Day. And for me that’s one day where I’ve become responsible for arranging the gathering of my family. For me that means, that there is a large Christmas tree to be assembled and decorated, masses of different foods to be prepared and served at the table that needs to be set up and decorated appropriately, and also presents to be wrapped. Coordinating with everyone else’s commitments is the icing on the proverbial cake.

Please don’t get me wrong, I love the holidays. But when you can’t stand for long enough to put up a Christmas tree, let alone decorate it (a neck deformity plays a large role in this as I can’t hold my head up, which makes things like standing on a step ladder dangerous, not fun), and all the food being prepared is completely inappropriate to eat due to gastroparesis (a partially paralysed stomach) and a surgical transgastric jejunal feeding tube(a feeding tube placed through the abdomen with one port into my stomach and another port that continues past the stomach to the jejunum in the small intestine) for your nutrition, it is really hard to find that holiday spirit.

Sitting here, I honestly cannot fathom how people living with chronic illness pull off these celebrations year after year.

It should be a happy time. I wish it was. It used to be.

Many people find that the holidays trigger depressive episodes or anxiety for any number of reasons, and I suppose that my hope in writing this piece is to share that you are not alone. Life with chronic illness is hard by nature, and I personally have found that as each year has passed it has become harder still to find the physical and emotional strength to cope with the holidays. I would give anything to go back to how things used to be, but life doesn’t work like that. So, how do you turn what has become a stressful time back into something to be enjoyed?

I am trying to turn my focus to non food related elements to begin with, taking time to choose presents for my loved ones, and wrapping those. Adding a personal touch with handmade details if you enjoy crafts (or use crafts to fill your days) can help. I know that I can call on family members (albeit with difficulty) to get help assembling the tree, and maybe if I take it in short sessions I can decorate the tree if I get someone to help me where my body fails me.

I truly feel for people who don’t have the support of their families. I couldn’t cope with this alone. So, if you are alone during the holidays, know that my thoughts for one are with you.

Coping with special events (holidays and travel):

1. Take extra rest before, during, and after: The best rest is lying down with your eyes closed in a quiet place. Give yourself plenty of time to recovery between parts of the events.
   
2. Plan in detail: Plan each activity in your event/trip with rest breaks and alternative low-spoon activities. Making Compromises will help you keep a nice balance of rest and fun activities.

1. Communicate your plans and needs with others
2. Have all the aids ready and access needs met

Make a list: write down what you want to do. Try to be as detailed as possible

Prioritize activities:

Define your limits: determine how active you can be without intensifying your symptoms

Adapt your list to your limits: delegate, simplify, substitute and eliminate to have a reasonable amount of activities you know you can do

Another plan template:

Event: name, location, time

Actions before: What you need to do to prepare before the event

Actions during: what you must do during the event

Actions after: what you must do after the event to take care of yourself

Access needs: do you need a scent-free place? Wheelchair accessible location? Dim lights and sounds?

Aids needed: do you need built up utensils to eat? What do you need to help you get around? Do you need a specific chair (ex. Most comfortable chair) or a specific seat (the one closest to the bathroom, the one with  the most space)

Flare triggers: list allergies and flare triggers that impact your health- plan to avoid them

Who can help you: are there any friends or family members who can help you execute this plan, make the plan, or prepare for it

A blank one for your use:

Event:

Actions before:

Actions during:

Actions after: 

Access needs: 

Aids needed: 

Flare triggers: