How to Manage Your Chronic Illness Through the Holidays

Let’s face it, we all stress through the holidays. It’s rarely an “easy” time of year for anyone. Over the years I have spent many holidays working in retail; I have had to share time between families (back when I was married); I’ve had to spend some Christmases all alone. And then there’s all the things we normally have to do like cook, and clean, and buy gifts (sometimes with limited money) and almost always with limited spoons (for those of you who use Spoon Theory). How can we be expected to manage all of this? And many of you may not handle it well. So, here’s what I’ve learned.

Do you like my Star Wars Ugly Christmas Sweater?

The most important thing to do is PACING. For those of you unfamiliar with my blog post on Pacing earlier this month, it basically comes down to doing the same amount of activity every day (so no over-exerting) regardless of how you feel. What usually happens, especially at this time of year, is we have a good day so we go ham and do as much as possible on that day (cooking, cleaning, etc) and then we end up not being able to do anything for day(s) after. If we do just 1 activity on that “good” day and then also do just 1 activity the next day, regardless if we feel better, the same, or a little worse, we will more easily avoid a string of “bad” days.

My only physical activity on this particular day in 2018 was ice skating.

The other most important thing is setting boundaries. Who says YOU have to host dinner? If you do host dinner, then maybe you don’t need to be the one to cook (can everyone bring a dish?) or clean by yourself (if you have a partner, can they help with the cleaning and prep). When shopping for presents, have you done it online? If you do have to go to the store, just use that as your 1 activity for the day (and wrapping the presents being an activity for another day). Tell your support system what you can do, and what you need help with. Stand up for yourself and don’t let them bully you.

It’s okay to say no, even if you have to say it to Santa himself.

If you don’t have a strong support system, which I know sometimes happens, then again, revert back to pacing, and say NO if you can’t do something (again, this could be hosting dinner, cleaning, etc), and see what other help you can get. Maybe there’s a neighbour or friend you can pay to help you cook or clean (that way it’s less expensive then hiring a professional). We need to use some flexible thinking and get outside the box.

I also recommend cuddling with your pet (if you have one) as they can help to reduce stress (RIP my little Spike).

The holidays are stressful, so we need to do what we can to manage our stress levels and take care of ourselves, while still living by our values (and hey, self-care may be one of your values). Have a Happy Holidays and keep making the most of it!

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How Do I Become a Castle with My Boundary Setting?

A lot of people struggle with boundary setting in their relationships. I often see people complain that their family members don’t treat them well, that their spouses don’t, and it seems all the worse for people with chronic illnesses. And actually, that is part of what Gabor Mate says in When the Body Says No. Boundary issues are common within families, and perhaps are part of the “social” part of the biopsychosocial aspect of disease.

Image from: https://positivepsychology.com/great-self-care-setting-healthy-boundaries/

And look, I’ve been there. Though I have good boundaries with my family members, it’s often because I set them. For example, I tend to not talk politics with some of my family because our differences in views were causing me stress (and stress is bad for chronic illness!). I do sometimes still struggle in romantic relationships and friendships. Setting a boundary means being assertive, and sometimes that pisses other people off, especially if they’ve gotten a way with violating that boundary for a long time. As chronic illness warriors we need to get good at setting boundaries as part of our self-care. Here is one way of thinking of boundary setting.

De-stressing does not just mean bubble baths…

Imagine that you are a castle, and the boundary is the personal space that you are placing between yourself and other people. The walls of the castle show that personal space. The moat lets other people know how close they can get to you, and in this case it can change size depending on the person and/or situation. The draw bridge itself is what allows people to get in, and keeps people out. This draw bridge helps us to feel secure. The castle guards are the actual skills we have to protect our boundaries. They can also help us when someone crosses our boundaries. And it’s important to remember that boundaries can be verbal, physical, emotional or spiritual.

This is the image my practicum site gave clients when we gave psychoeducation on boundary setting.

So how do we exactly do this? Well, short answer is to say no, resolve conflicts, follow our values, be assertive, and express our needs. But that is easier said than done. Saying no and being assertive both require practice, and if we’re nice (which most of us with chronic illness apparently are), it’s super difficult to do these two things. If you have a therapist, then that might be where you practice these skills. Otherwise, it’s easiest to start with boundaries that aren’t going to upset the other party as much. The other pieces of this: resolving conflicts, following our values and expressing our needs can be handled with some self-exploration, by answering the following questions for ourselves:

• Who are the most important people in my life?
• Who is there for me when I’m struggling?
• What are these above relationships like for me?
• What are the positive things I get from this other person?
• What are the negative things this other person says or does? And how does that affect me?
• What do I want to get? And what am I willing to give?
• What have I tried already in regards to boundary setting and how has this worked for me?

Once we’ve done this, we have three options:

• Leave or end the relationship.
• Stay and live by our values: change what we can (remembering that we can’t change other people’s behaviour) and make some room for things that we may not like (that aren’t in dire need to change)
• Stay and give up acting effectively – which is all to common an occurrence

How I look when I set some boundaries…

The more you practice setting boundaries, the easier it will be. It will also start to reduce your stress, which means you may start to see an improvement in your symptoms (be it physical or mental health), and are more likely to improve your well-being. Let’s keep making the most of it everyone!

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Setting Boundaries

Boundaries are super important for all of us. With work, relationships, even ourselves. While boundaries are important for everyone’s mental health, I think that for Chronic Illness Warriors, the key is to be able to set boundaries that still allow you to ask for help when needed. I would say that I am pretty good at setting boundaries, but that was definitely a skill that I developed over time. I was reminded of boundary setting as I was preparing for group counselling that I’m co-facilitating as part of my practicum. So I’ll admit I’m borrowing some of this information from Marsha Linehan’s Dialectical Behaviour Therapy (DBT). The group has a few pscychoeducation components as well as counselling, including mindfulness (you know that’s my favourite), emotional regulation, distress tolerance, and interpersonal relationships. Though I’m not a “DBT-er” (I’m clearly happy to be co-facilitating the group though and learning all of this) I think that many bits of information from DBT and this course have great applications for many of us! (For those of you wondering I am drawn to existential therapy as well as Acceptance and Commitment Therapy).

My best llama impression.

Okay, so why should we set boundaries? Boundaries allow us and others to know what we are okay with and what we are not. For example, some people are huggers while others don’t like to touch (granted Covid, so many of us are in the non-hugging category right now). The person who doesn’t like to be touch needs to tell the other person (politely, if possible) that they are not okay with that. The tough part with boundaries is that if they are crossed, it can be awkward or feel rude to point that out. However, your mental health is important and if you’re really not okay with something it’s good to be vocal about it. Another example is a work one. Is it okay for your work to contact you when you’re not there? I was in a position about 6 years ago where I told my work it was totally okay for them to contact me when I wasn’t there. About two years ago (same company, different store) I told them I wasn’t okay with it. I set the boundaries and stuck with them based on the level of stress I was able to handle at the time.

Costa Rican jungle.

When it comes to chronic illness, setting boundaries can revolve around many different areas, but I’ve found two are the most important: others, and ourselves. With others, you can decide how much or how little information those in your lives get about your illness/health, mental health, etc. I totally believe in sharing but everyone has different comfort levels with sharing, and I totally respect that, as I expect others to respect mine. Boundaries can also include what other people get to help you with. I loosened my boundaries after my hip surgery because I acknowledged I needed more help. Now granted I found myself feeling more grumpy at the time, but it wasn’t because I changed my boundaries, it was because I couldn’t as much myself! And that ties into our boundaries with ourselves. What are we okay doing? Saying? When we push our boundaries are we doing it to help ourselves or because we “think we should”? Sometimes it’s okay to push personal boundaries. With phobias for example, it’s possible to get over them by stepping out of your comfort zone and confronting the feared animal/situation/whatever it is (best to do it with a professional but I’ve known people to do this on their own). Getting over a phobia can be helpful for overall mental health. Saying yes to a night out with friends when you’re not feeling up to it is an instance of crossing your personal boundaries when it is not okay.

Castle in Ghent, Belgium.

I’ve been sharing example from a “personal bill of rights” (Linehan, 2015) throughout and if you’re struggling with boundaries, I would say create your own (or use which ones of these resonate with you). Even stick it somewhere that you’ll see it often. Remember, that boundaries while important should be flexible because they lead to healthier relationships (including the one with yourself). I would love to see what you come up with so feel free to share on Instagram and tag me (@janeversuspain)!

Have a great week and keep making the most of it!

Setting Work Boundaries

When it comes to work, a lot of people have difficulties setting boundaries. For those of us with a chronic illness, it becomes a difficult but necessary part of literally being able to work. Why am I bringing this up today? I have been off of work for the past week because of my hip tear, which seemingly go worse when I (a) accidentally leaned against it at work, and (b) my hip popped out of and back into place when I was doing an elevated pushup. Now I’m set to go back tomorrow but I will probably need some accommodations, because, despite the fact that I felt worse on Monday and now better today, I do a lot to mitigate the pain. The other part of this equation is that work has been so stressful since we fully reopened (limited customers) at the end of May, and I haven’t been able to set boundaries around that, I’ve become more anxious and had a general increase in body pain anyway. Now’s the time to make a change.

Even on the beach I had to change positions a million times.

So how do you set work boundaries? I mean, no boss or company wants to have to accommodate for an employee, right? Yet as much as I hate asking, I have seen some managers do it for others, and have had some managers do it for me. Plus, legally in Canada and some other countries, employers can’t discriminate because of (dis)ability. In the past I’ve always approached it with a very direct attitude. This is what I need, this is why I need it, and without it I can’t do my job properly. Direct works best. And when in doubt I have a doctor’s note as well (I currently have a few doctor’s notes in my file with no “expiry” date to them). Plus, I always tell my bosses that I will be flexible when needed (and I have been) because I understand the importance of the business (I work in electronics retail so it’s importance really depends on your own value to it).

Image from: https://www.flickr.com/photos/moodlegal/32946222992/

What’s the difference now? Covid-19. As I’ve mentioned, we aren’t through it yet. At my work, we still have 18 staff members not back yet, we let limited customers in the store which is still too many at a time at times, and things are definitely not running as “normal.” What I currently need because of my hip: to be able to change physical positions as needed – sitting, sitting with my legs up, standing, walking, lying down. What I need because of stress: to not be the only person scheduled at customer service where I get long lines and yelled at by customers all day. Here’s the thing, I am scheduled alone at customer service for the next 3 days. The only other person scheduled for my entire department is collecting web orders, so literally nothing to do with directly dealing with customers. Therefore, I can’t just leave my post to change what position I’m in. I will stand for 9 hours with just my 30 minute break. Bad for hip and bad for stress. Do I need to say something? Yes. How will it go? I guess we’ll find out.

Being in nature is helpful for stress. Take a time out every know and then in order to heal.

I’m curious if any of my fellow Spoonies have been back to a work environment yet and what they are doing for boundary setting. This is a time where I wish I could work from home, but wishing isn’t going to make that happen at the moment. Please comment or DM me on Instagram and share your work boundary stories. Stay Safe.