- How can I do this so that it lessens my burden?
- Can someone help?
- Does it need to be done at all?
- Can it be done at a different level of effort?
- Can I purchase it without compromising my finances?
- When someone asks me to do something, I’ll ask them the
questions above. I’ll ask myself: Would I enjoy it, and can I do it without
overloading myself? If I’ll resent it, I better adjust my attitude or not do
Sunday, November 26, 2017
There are reasons to stress all year long, but the added social events and holiday tasks in November and December consistently encourage us to overdo it. People expect things from us, and we place expectations on ourselves.
Sometimes – or a lot of times – “just” getting to work, paying bills, keeping house, caring for others, and maintaining some modicum of basic health is an overwhelming goal. Add the holiday season expectations, and those of us with MS can be vulnerable to increased symptoms.
I firmly believe that these suggestions are good for anyone, those in perfect health and those with chronic illnesses. It’s just that what may be optional for them is critical for us.
Establish the minimum: Decide what the absolute minimum is that you need to do to maintain your health and be happy this season. Not being able to do everything we want to do is a daily harsh reality with MS, but being strategic about how we spend our time and energy can help alleviate the discouragement.
For holiday tasks, be very clear on what is needed and what is preferred. Anything beyond what is necessary is a choice, not an obligation. Sometimes just a shift in thinking can change how I feel from resentment to joy. If I’m doing something expected and I’m coming from a place of resentment, I will suffer. When I’m gifting, I’ve decided this is something I’ve chosen to do and I’ll feel good doing it. When it’s appreciated, it’s only an added bonus.
Reduce the demands: Ask yourself the following:
Organize and plan ahead: Don’t expect to remember everything without any extra effort. I keep a list of holiday season tasks that I want to make sure I do each year. It includes things I’ve done in the past, mailing due dates for cards and packages, gifts given, gifts received, thank you notes sent, and events attended.
If possible, I’ll proactively schedule time off from work to do holiday tasks. Trying to accomplish them all during evenings and weekends often doesn’t allow enough rest for maintaining health.
Make room for joy: Connect with loved ones in person or by phone, text or letter. For many years I’ve alternated between Christmas cards sent in December and New Year’s cards sent in January depending on how much I had to do that season. Some years I didn’t send cards at all.
Include time to recharge in ways you love that feed your soul. I love getting outside and moving my body. It’s important to not just set sights on getting through the holiday season. Experiencing joy along the way is crucial for my sanity, and I will not do without just because I have a chronic illness.
Adjust to changing plans: I’d forecasted the things I would do this holiday season to match a level that I thought could accommodate my MS fatigue. Then my career placed demands on me I hadn’t anticipated. Sure, I whined about the surprise demands before verbalizing that it’s my choice to participate. The truth is I want to do these events; it’s only the scheduling that frustrated me given it challenges me with fatigue. To adjust, I found time on the work schedule where I could come in late or take some time off to offset the longer days. I also talked to a couple people who scheduled the events and asked them to consider spacing them out if done again in the future.
Receive judgement with compassion: People will judge the choices you make. Understanding that we can no longer do everything we’ve always done is hard to take for those that know and love us. Sometimes it’s not about the task, it’s about them wishing our health will be okay. It’s hard for us, but it’s also hard for them to accept that we have a serious illness that affects every aspect of our lives. Other times due to the invisible symptoms we experience and successfully accommodate, they forget we have limitations. It’s up to us to share our limitations when they affect others. No one who cares about us really wants our health compromised because of them. Usually they don’t understand that the little things could be a tipping point for us that requires a long time to recover.
It takes a lot of effort to live well with a chronic illness among people that have much more natural energy. They haven’t been forced to face these issues, and they may not understand how little things for them can be big things for us. It’s our job to take care of ourselves while nurturing relationships and living a life we love.
Sunday, November 5, 2017
I used to think being positive meant focusing only on the good things in life. I was really good at it too. A friend would say she’d had something bad happen, and I wouldn’t miss a beat to respond with how great it is that a worse outcome didn’t result.
I did it with myself too. It seemed like if I let myself think about the difficult things, that it was being negative. That it could lead falling into a dark place of feeling bad and never climbing out. I once had a counselor tell me after 9/11 that thinking about what happened doesn’t make you sad. What happened makes you sad.
In that way, thinking about having Multiple Sclerosis doesn’t make me sad. My chronic illness and progressing MS symptoms make me sad. Ignoring them doesn’t change the fact that I have both. We’re not limited to feeling one emotion at a time, and feeling sadness or frustration with one aspect of life doesn’t preclude feeling optimistic. I’d argue that we need to feel one to appreciate the other.
To feel genuine gratitude, I need to know it’s not mandatory to stuff my feelings and be happy every moment. I can’t ignore the tough parts of my life and only acknowledge the things that make me grateful. I can’t just write a list of unrelated things to be thankful for and stay sane. If I’m feeling sad or resentful, I need validation that it’s understandable to have those feelings. If I skip this step, I’m minimizing my frustration or implying I don’t have a reason to feel bad. Once I sit with it, grieve for it, and assure myself I’m not weak or overreacting, I can then choose to focus on things that make me grateful. Sometimes it’s a quick shift, other times it’s a rough climb out of funk. Either way, it helps me come to a place of genuine appreciation in my life.
I think about it as winning a bronze medal. There’s an article in Scientific American, Why Bronze Medalists Are Happier Than Silver Winners, that I think we can use in our own lives to be happier. People who compete and miss winning first place exhibit less happiness than people who don’t perform as well but still make it to the podium. Silver winners focus on the one person who did better. Bronze winners compare their performance to all the people that tried and didn’t win anything.
When I’m grateful, I’m recognizing my efforts and satisfaction. I’m not seeking perfection. I’m looking at how amazing things already are. I may acknowledge what could be better, but I’m recognizing all the ways it could be worse. Some people seem to have a point of pride of noticing the error or the flaw in things. They can make you feel like you’re never good enough. Try not to judge yourself harshly and add to feeling miserable.
How we perceive our situation makes all the difference. When living with a progressively disabling chronic illness, things will stink and be sad and frustrating and feel too big to deal with at times. Sometimes the best I can do is know that how I feel right now won’t last forever.
The measure of success changes depending on my health. If I can participate in a race and come in last, I’m grateful that given my circumstances I can do it at all. If I feel bad, I know that’s a part of the condition and grateful for the abilities I still have. If I’m experiencing a permanent loss, I acknowledge that it’s sad to experience the loss and grateful for the time before the loss.
Strive to have a mindset of someone who’s coming in third. Or someone who’s in last place and may or may not finish. You’re still doing it.