Top Post of All Time (So Far): The Feeling of Frustration When New Symptoms Appear

This post was back from February of 2018. I was recently looking at some stats for this blog over time and I was actually a bit surprised this was the top post as I knew there were several others that I’ve noticed get a lot of hits. That being said, maybe it’s not surprising because many of us with chronic illness – diagnosed or undiagnosed, and regardless of our current health status – often deal with new symptoms. So here’s a repost of that post. No, extra commentary added (as it’s also interesting to just see where I was at physically and mentally at that time).

Me in February of 2018, the month and year this original post was written.

I’ll admit that I’ve been pretty lucky in the sense that my symptoms have remained the same over the past few years. Chronic, widespread pain (joints, muscles, nerves) and fatigue (yes I like to be in bed by 9:30 at the latest, though I do try to get up early). The catch-22 is that it’s hard for any official diagnosis to be made when new symptoms aren’t popping up… that leaves the question, is it better when they do?

I’m a sun bunny. Which is not good if I really do have lupus. AVOID THE SUN! Is what is preached as it exacerbates symptoms and can lead to rashes. I spent all of last summer, and the summer before out in the sun, just here in Toronto, but still. Too much sun and yes my joints maybe hurt a bit, but literally only if I was lying on the beach. If it was combined with some sort of exercise, then not so much. Fast forward to last week, which I spent in Arizona. Above average temperatures all week lead me to hiking, swimming, the hot tub, and patio lounging. All of my favourite things. Oh yeah, and it lead me to these little tiny white bumps on both my hands – a sun rash.

And while the optimistic part of me took a picture so I could show my rheumatologist (my next appointment isn’t until May). Maybe they can officially say it’s this or that! The realistic part of me says “oh fuck, now I can’t go out in the sun.” Segue grumpy face. I don’t want to wear long sleeves, as was suggested to me on Instagram when I posted a picture of my hands (also not sure how I’m supposed to cover my hands in the summer anyway). So, I’ve decided to take my psychotherapist’s advice for now and be grumpy about it. It’s impossible to be happy and positive all the time (even though that’s my preferred mood). I’m going to be grumpy and frustrated and sit in that emotion for awhile, until it’s time to not do that anymore.

If anyone has any advice for sun-lovers, stories, or anything else they’d like to share, feel free to comment or email me.

So that was that. And now it’s 2023, almost five years later, where I can give so much more of what I’ve learned and try to share that with all of you.

Keep making the most of it everyone!

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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Spoonie Stress

It’s not really a surprise that Spoonies have more stress than healthy folks. Chronic illness and chronic pain warriors just have a lot more to deal with. Coming up with ways to relieve stress is important, and something I try to pay attention to. As stress accumulates it can lead to mental health problems, and quite often, especially with autoimmune diseases, flares. Today I thought we’d focus on some causes of stress and I’ll give some ideas (that work for me) for you to try out to see if they help at all.

Stress is an evolutionary response.

First, I thought we’d start off with a few definitions. The reason I want to give these is that often as a therapist-in-training, I see that people don’t really understand the meanings of the words they use, nor are they aware of the difference appropriate emotional responses and ones that don’t fit the situation.

• stress – normal, physiological reaction caused by the fight-flight-freeze response in our brains, alerting us that something needs our attention. It’s neither good nor bad, but is a signal telling us that we need to act on something. podcast
• anxiety – “an emotion characterized by feelings of tension, worried thoughts and physical changes like increased blood pressure” (American Psychological Association). Anxiety is also not inherently good or bad. It’s another natural response of the fight-flight-freeze part of our brain. It’s also normal and part of what makes us human. There is no way to be totally free of anxiety. Fear, on the other hand can be extremely protective and it can be easily confused with anxiety. podcast
  • Anxiety disorder: anxiety that is out of proportion with the situation, and is long-lasting and severe can indicate an anxiety disorder. Someone with an anxiety disorder has “recurring, intrusive thoughts or concerns” (APA)
• depression: an emotional disorder that can include feelings of sadness, loss of interest in pleasurable activities, and low energy and motivation. Sadness is a common emotion that is important to our functioning. Depression occurs when sadness doesn’t just “go away” on its own. Both anxiety disorders and depression are helped with psychological treatments. blog, podcast
• trauma – “an emotional response to a terrible event like an accident, rape or natural disaster. Immediately after the event, shock and denial are typical. Longer term reactions include unpredictable emotions, flashbacks, strained relationships and even physical symptoms like headaches or nausea” (APA). I’ve heard this one be misused often, so just be aware of whether you’re actually experiencing trauma. This can also be helped with psychological treatments.

Understanding mental health concepts can be helpful for managing it.

Okay, now that we’ve got that out of the way. What are some common causes of stress in Spoonies?

• physical symptoms – flares, pain, and basically any other annoying and/or debilitating symptom that comes with your chronic illness. blog
• medical gaslighting – when a doctor or healthcare professional dismisses your pain and/or symptoms. podcast
• interpersonal relationships – difficulties with your partner, family, or friends often stemming from a lack of understanding of your illness. blog
• finances/insurance – even with insurance there is a cost of medications and other treatments that may not be covered or give you as much coverage as you need. blog

Side effect from my hip arthroscopy that definitely caused me some stress.

These are of course, just a few, and you may experience a lot of other stressors depending on your illness and overall life situation. The point out reducing stressors like this is to improve your overall quality of life. So, here are some suggestions that I’ve found to be helpful for each of these (I’m going to link some of my other posts and podcast episodes in case you want more in-depth information).

• Mindfulness, exercise, sleep, and diet. This means daily practice of whatever way you stay present. Getting whatever type of exercise is accessible during the day (even if it’s a short walk). Practicing good sleep hygiene. And eating as healthy a diet as you can. podcast, podcast, podcast, podcast (yes, one for each of these).
• Being a self-advocate when it comes to your health and knowing your rights. The medical gaslighting podcast episode I mentioned earlier goes into being a self-advocate. For disability rights check out this podcast.
• Effective communication and emotional regulation. We can’t control other people but we can definitely control ourselves, even if our emotions are high. podcast
• Budgeting, budgeting, budgeting. I am without health insurance for the first time in many years. And yes, I live in Canada where healthcare is “Free” (with the exceptions of medications, dentistry, and adjunct care such as physio/chiro/naturopath/massage/etc). Yet I’ve seen the chiropractor twice in the past 3 months (with another appointment today) and gone for a massage. I’ve very meticulously budgeted these in because they are so helpful. The blog post mentioned for finances incorporates budgeting.

There are lots of ways to decrease stress. I enjoy some light exercise in nature.

On top of all this, practicing self-care (podcast) is very helpful. If you don’t like the term “self-care” because it’s been waaaay overused in the media than maybe think of it is as “ways to improve my overall health.” It includes domains of : physical, emotional, intellectual, social, spiritual, and work. It is also incredibly helpful in reducing stress levels. I’m going to be hosting a self-care challenge starting on April 24 on the premium blog. To sign up for the challenge it is only $5 and you get 4 weekly premium posts, motivation for the challenge, ideas and help with the challenge, and an opportunity to be featured on the blog and/or podcast! Stay tuned for more!

Until next week Spoonies, keep making the most of it!

How Do You React to New Symptoms and Side Effects?

What do you do when you have an expected new symptom? Or weird side effect from a drug or surgery? Or a better question, how do you feel, not just physically but also emotionally? It’s tough having a chronic illness. It’s tough starting a new medication or having a surgery. And so many chronic illnesses are invisible, so it’s difficult for others to understand exactly what is going on with us.

This is what invisible illness looks like.

The inspiration for this post came from my experience on Saturday morning. I had a hip arthroscopy two weeks ago, and on Saturday when I woke up and started to hop around on my crutches, my foot turned purple, as if all the circulation was cut off. I had a friend staying with me, and honestly, her reaction heightened my anxiety about it. I managed to keep a somewhat level head, emailed some of my practitioners and texted my brother’s partner who happens to be a doctor. Apparently this is a normal reaction after lower body surgeries. Basically I have to keep my foot elevated (at least at heart level) as much as possible. I did also go to the walk-in clinic that my family doctor works at. The doctor I saw looked at my foot and double checked that there were no blood clots, then suggested elevation and compression socks and sent me home.

Purple foot – Saturday morning surprise!

There are a couple of reactions we can have in situations like these, which, let’s be honest, happen often when you have a chronic illness. One, is fear, which, like I mentioned, is easy to be drawn to. It’s the fight-flight-freeze response, with flight or freeze usually taking over. It can be scary, overwhelming, anxiety-producing, even upsetting. It can also cause depression and sadness, because of course, something else stupid and terrible has happened to you. These are normal reactions, and short term responses like this are totally fine. The problem develops when these feelings take over, especially when you have a chronic illness because these situations, these stressors, are going to keep happening. If you are feeling like this more often than not, it’s time for some professional help. Seek out a therapist, because you don’t have to feel this way forever.

Image from: https://www.chconline.org/resourcelibrary/fight-flight-freeze-anxiety-explained-for-teens-video/

The second reaction kind of goes more with the “fight” part of the fear/anxiety response. This reaction is one I often go with which is “how am I going to solve this problem?” I do research (I will literally read scholarly journals online as well as just reddit threads – I need all points of view). I will ask the professionals I know, and the other Warriors I know. I will buy anything I need, whether I have the money or not. I will ask for help (I mean like I needed a ride to the doctor after all). This is a proactive response. The problem with this response is that it can ignore emotion. So, if you’re like me, it’s good to take some time alone to reflect, maybe use some mindfulness, get inside your body and your emotions and let them be what they are. Holding it in can make things worse in the long-term. Mindfulness will be your friend.

This is what I got with my proactive approach – a elevation pillow.

A third reaction is acceptance. It doesn’t mean you don’t experience the short-term emotions of fear and anxiety mentioned above. It doesn’t mean you don’t do some proactive things so you can take care of your body and your symptoms in the long-term. It just means that in the present moment you can understand that this is a thing that happened. It is not a reflection of you. It is (usually) not unsolvable. We all have to deal with acceptance when we have a chronic illness. I did a whole podcast episode on illness acceptance (which I will link below). This is something I strive for always. Can I be accepting when something I don’t anticipate or like happens? I would say for myself, the answer is yes. I do tend to be proactive first, then I try to use mindfulness to experience my emotions, then I try to accept reality. Is this always a perfect process? No. I do have people in my life to help me – mainly a psychotherapist and a naturopath – who are specialists in this kind of work.

Image from: https://www.smartliving365.com/the-problem-with-accepting-what-is/

I hope everyone has a great week. Reminder, I have a premium blog post coming out on Saturday, so if you’re not signed up and you want some more work on self-care strategies, it’s only $5/month and it’s well worth it. Remember everyone, keep making the most of it.

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