Facing Fatigue and Grief During the Holidays

As we move into the holiday season, I am reflecting upon the year. Thanksgiving is a time to appreciate all that we are thankful for. On an individual level, I haven’t really dwelled on that idea in the past probably because I, like others I suspect, take my blessings for granted.

A year of turmoil, change and loss

This year has been one of turmoil and change for me and my family and I’ve learned a lot along the way. Without going into all of the details, I want to share one lesson I’ve learned that I hope will help me be gentle with myself during this season and beyond. It might help you, too.

After years of struggle with her health, my mother died in early May. We had become best friends in recent years and we supported each other unconditionally. I was not only her daughter, but also her confidante and caregiver. Then in September our special cat Oscar also died. In only a few short months, our household of 3 adults and 3 precious kitties lost 1/3 of its members.

We took care of each other

Many years ago when my mother’s health was better and I was newly diagnosed with MS and RA, we shared household duties. I joked at the time that together we accomplished almost as much as one healthy person might on a bad day. She took care of me when I lost physical strength and needed someone to talk to. And I took care of her in many ways when she needed it most during the past 10 years. It feels very strange this year not to have to restrict our Thanksgiving meal choices to items that she would have been able to easily digest.

Gratitude and grief tangled together

For the first time, my husband and I only need to consider each other’s wishes and desires this holiday season, and I’m not sure yet whether I feel gratitude or grief about that. One thing I do know is that I’m feeling physically and emotionally spent. I feel tired and fatigued.

I spent my 40s primarily trying to manage the effects of MS and RA on my body, take care of my mother’s increasingly challenging needs, and watch my professional music career evaporate faster than spilled ice tea on hot concrete during an Oklahoma summer.

No one talks about how hard it is to be a caregiver for your parent

Being a caregiver to a parent is harder than anyone ever lets on. It seems like nobody ever talks about it until after the parent dies. As an adult child, there is a constant balancing act to negotiate between respecting their independence and needing to emphasize health and safety at home. For example, nobody ever taught me that I would need to lecture my mother about closing the dishwasher door before trying to cross the kitchen to throw away garbage.

One day when she was feeling stronger than usual, my mother decided to clean dishes in the kitchen. But she proceeded to trip over the open dishwasher door to break her arm. Although she permanently damaged the top shelf of the dishwasher, the more significant consequence was that she permanently damaged her ability to shower independently ever again. Recently I've begun to miss the knock, knock, knock on the shower wall to summon me to come scrub her back.

Reminders to breathe

My mother was on oxygen at home around the clock. She had terrible difficulty breathing. On most mornings during the past few years, I would stop in her bedroom doorway to watch for her chest to slowly rise and fall. After her death was declared official in the emergency room, it was the ER doctor who reminded me to breathe.

After death – particularly if you were a family caregiver to the person who died – people tell you to take care of yourself. Do something nice for yourself. Be kind to yourself. Take time to grieve.

Grief feels a lot like crushing fatigue

Nobody ever told me that grief feels a heck of a lot like crushing fatigue. Or maybe, it’s that chronic disease fatigue feels a little bit like grief. Either way, combine the two and it becomes almost impossible to function during a time that so much needs to be taken care of.

I have spent many hours just sleeping or staring into space to give my body time to recharge. Sometimes it has helped, many times not. That’s exactly how MS fatigue has often felt to me. There’s almost nothing you can do to make it loosen its grip. But I’m thankful that I’ve had years of experience to understand that this is not a permanent state. If you are patient with yourself, it does get better.

Be patient with yourself

Be patient with yourself. There’s another one of those recommendations that I often give newly diagnosed persons with MS. Give yourself time to grieve the life you thought you might have. But be open to the fantastic life you may create.

So this holiday season, I am going to remind myself that it’s ok to feel sad and angry. It’s ok to cry no matter who’s around. It’s ok to sleep or stare into space when necessary. And it’s ok to feel joy and happiness that my husband and I can focus on each other.

Thankful for both my past and my future

I am thankful for my past experiences and the future that has yet to be created. Just acknowledging that helps me to feel a little less burdened and a little less fatigued. Acceptance, hope, and gratitude are such useful tools in facing life’s challenges in general and in particular life with multiple sclerosis.

Be kind to yourself and have a restful holiday season.

Best wishes,

Lisa

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