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).
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.
The holiday season is a stressful time for most people. It’s often financially draining. Physically draining when trying to attend all of the events. And for many people it can be a lonely time or a triggering time or a time when there is more sadness or anxiety than the rest of the year. When I lived in Toronto from 2015-2020, I spent 1 Christmas with just my partner at the time (and my dog), followed by 2 Christmases with just my dog, followed by 2 Christmases with a friend and his family, and then finally a Christmas with my parents. Last year I was with my brother and his wife and stepkids (and my SIL’s brother and his family). This year I get to spend it with my parents, other brother and his wife (and 2 dogs). I know what it’s like to have a lonely Christmas. I also know what it’s like to have a busy Christmas. I spent many years (including with chronic pain) working in retail and working 45+ hour weeks throughout December, doing a lot of standing and running around. This year I’ve gone to so many holiday events already that even though I feel a lot better physically (and emotionally) than I have in the past, I still notice a bit more pain than I had. How do we navigate all of this?
Emotions: Loneliness, Sadness, Anxiety & Stress First, I think that recognizing what you’re feeling is important. I’m a big believer in not trying to repress emotions (while also not getting swept away by them). Making some room for this experience is actually okay. You’re not alone in any of these feelings and remembering that is so important. Giving yourself a lot of compassion can help a lot. Also trying to connect with others as much as possible – even if its short durations, or online instead of in-person can help ease a lot of these feelings. If you can muster up a gratitude practice, I find it can be helpful. Of course, reach out to local helplines for support if you’re in crisis. Maybe try this self-compassion/Christmas gratitude practice I released last year.
Pain and Other Symptoms Noticing your triggers for pain – as I’m sure many of you are aware – is important. There’s no point pushing yourself to the point of exhaustion. Taking breaks and pacing is extremely important, even if you’re “in charge” of buying presents or cooking meals (actually this is when it’s most important). Think about who you can share some of these responsibilities with and ask for help (making room for uncomfortable feelings that may come with it). Try not to schedule too much for yourself in one day and keep all the days with as equal amount of activity as possible. I know that the amount of events I’m attending is actually winding down over Christmas and all of the cooking is shared between myself, my parents, and my brother and SIL. My New Years’ plans are pretty chill – my partner and I are just going to a brewery (just us). Maybe try some relaxation practices throughout the holidays when you’re taking breaks. Something like yoga nidra.
All in all, just doing what is within your control to make this a good holiday and allowing what is not in your control to just be there, without it overtaking you. I know from experience that this is easier said than done. Just keep on making the most of it everyone!
My AI disease has more or less been in remission for about 6 months (the doctor officially gave me that status in July). As such, I was very optimistic about my travel plans to Turkey and Egypt for November. I mean, I would have gone on the trip regardless, there was just less planning around how to manage than there would have been before (I almost wrote worry instead of planning, but truth be told I am able to limit my anxieties around travel because it is a values-based activity for me). Travel for me, means going on adventures – doing as much as I can, eating whatever I want, and just having as amazing an experience as I possibly can…
And I did. I ate my way through Istanbul. Did 2 walking tours, climbed a tower, went on a boat ride down the Bosphorus, had drinks on a rooftop patio looking out at the Galata Tower. In Egypt I went on a Nile dinner cruise, saw the Great Pyramids of Giza, had an authentic night out with friends (1 of which is a local) in downtown Cairo, went to the Citadel, the Egyptian Museum, Temple of Karnak and Luxor Temple, Valley of the Kings and Queen Hateshpsut’s Temple, and did a hot air balloon ride over Luxor. Literally packed so much in. And then came home to some body aches and pain, an upset stomach, and a cold.
To be fair, the cold could’ve been (a) because there is one going around that I’ve been told about many times, or (b) because I was up for almost 36 hours (minimal plane sleep due to crying infant) and had to run through an airport in order to catch my last flight home. However, what is important for me to remember is that remission could go away if I’m not careful. So, here are three lessons I’ve learned when travelling while in remission from AI.
Getting enough rest. Sure, if your vacation is all about laying on a beach, it’s easy to pace, get enough rest and enough sleep. If you’re like me and prefer an adventure vacation, then it’s important to not overdo it. To be honest I think I overall paced well. Only 1 (maybe 2) activities per day – until the last day, in which I crammed more in. I struggled with the sleep part, again, particularly at the end of the trip. Being awake for 23 hours before boarding my first flight was perhaps not the greatest idea. And while I don’t regret the activity I did that sacrificed sleep, I think that squeezing in some rest/nap time, as impossible as it seemed, would have helped me a lot. So don’t forget to (a) Pace your activities, (b) rest between activities, and (c) get 8ish hours of quality sleep every night (and don’t stay up too long!)
Watch what you eat. I had cut out dairy and gluten and meat last fall, which has really helped me a lot. On the trip I ate a lot of dairy, gluten and meat. It is possible to have limited some of this (the gluten would have been hard). And I did have days where I limited the meat and dairy in particular because I could tell it was rocking my body in all the not good ways. While I think it’s important to always be flexible (including with diet), flexible doesn’t mean swinging to the opposite extreme. Lesson learned.
Keep stress low. Theoretically my vacation was relatively stress free. At least the vacation part of the vacation was. The travel part was not. Pretty much every plane was delayed, and/or we were running through airports to catch flights. Much of this was out of my control, of course, and yet taking more time to meditate, ground or recharge (on the flights for example) would likely have helped me get my stress levels back down much faster. I did keep up my meditation practice (for the most part) throughout the trip, which was likely helpful as well.
Staying in remission is a delicate balance. I got here through a change of diet, consistent exercise, and stress reduction, so it makes sense that changes away from those things that have helped me could lead back to AI flares. As Alanis Morrissette once said, you live you learn and that’s all any of us can really do. I’m going to continue to pay attention to and honour my body in anyway I can (at home and while travelling) – and I hope you do too – so that we can keep making the most of it!
I LOVE Halloween. I literally call October Halloween month (despite the fact that in Canada we also celebrate Thanksgiving in October). And while I’m in remission right now, I have had several Halloweens (including last year) when I wasn’t. Yet I’ve always managed to have a blast on my favourite holiday! For this post, I thought I’d chronicle my last several Halloweens, and then follow that with some tips for enjoying this particular holiday when you have chronic illness/pain.
2015 – Pre-diagnosis but pain was existent – I was in a new relationship at the time (technically we weren’t even official at that point). Since I did not know better I celebrate “as normal” – big street party, dressed up (Alice from Resident Evil). Paid for it the next day. 2016 – After initial diagnosis (lupus, fibro), still in lots of pain – I did a cool haunted house attraction with a friend a few days before Halloween. It was a fairly slow walk through, so totally manageable. She also knew about my illness and was accommodating. Halloween itself was quite chill, I dressed as a Jedi (including at work) and then my dog and I watched horror movies in the evening. 2017 – After actual diagnosis (UCTD, fibro), still in lots of pain – leading up to Halloween I actually did a lot of stuff. Rocky Horror Picture Show screening with a friend (we both dressed up). Haunted house attraction with coworkers. Dressed up for work (Casey Becker from Scream) and did the street party. However, everything was paced out and I made sure I had “recovery time” the next day. 2018 – slightly less pain – I did a solo trip to LA mid-October for the purpose of going to Universal Studio’s Halloween horror nights (and of course I did a bunch of other stuff while in LA). Also in October my friend and I did the Rocky Horror Picture Show screening again (dressed up again). Halloween itself was the street party (dressed up as Elle from Kill Bill). Again, paced and did things with people who were more than willing to help accommodate my needs (or by myself and I knew how to accommodate for myself). 2019 – slightly less pain again, last Halloween before the pandemic – October included pumpkin patch day and pumpkin carving with a friend, annual Rocky Horror screening with another friend, Halloween Jack & Jill (wedding fundraiser) with friends (I dressed up as Ellie Sattler from Jurassic Park – and my friend was Alan Grant). On Halloween itself I did a haunted walking tour with a friend. Paced. Helpful friends. 2020 – less pain again, pandemic Halloween – Again, I did a pumpkin patch, followed by pumpkin carving with a friend. Dressed up as Buffy the Vampire Slayer and had a horror movie night in on Halloween. 2021 – less pain again, literally finished moving – I was actually exhausted last Halloween. I had moved across the province (after moving across the country 10 months earlier). Moving + unpacking my new place. I wore my Hocus Pocus sweatshirt and had a horror movie night in while Skyping with a friend from Toronto. Definitely not paced and not enough Halloween in my opinion, but there was no way around that one.
From all of those experiences, here’s what I learned:
Pace yourself – spread out activities, allow for “recovery time,” and only go at speeds you’re comfortable with. If you need to take breaks in the middle of activities, take them. It will be more fun if you’re feeling okay.
Go with your support system – I have only done things with friends who are supportive and understanding. They are willing to pace, accommodate, and be helpful when needed.
Wear a comfortable costume – admittedly not all of my costumes were, but I learned as I went. Definitely avoided high heels (other than for Rocky Horror, but my friend was helpful and I eventually learned to bring a change of shoes). Cool costumes are great, and I’m known for being able to inexpensively assemble a wicked costume, however, if they aren’t comfortable or accessible, you’ll have less fun.
Mostly, if you enjoy Halloween, then do as many of the Halloween things as you can! All in the effort to keep making the most of it!
One of my diagnoses is undifferentiated connective tissue disease (UCTD) and while according to my new rheumatologist my disease seems to be more-or-less in remissions (still some mild symptoms) I wanted to talk about some misconceptions about UCTD that many people – patients, doctors, family members, allied healthcare professionals, etc. have about it.
It’s a diagnosis given when they don’t know what’s wrong with you. Not exactly, technically UCTD is its own diagnosis. It is given when someone has some symptoms of a specified connective tissue disease (like lupus/SLE or rheumatoid arthritis/RA) but doesn’t not have enough symptoms to warrant those diagnoses. Some of the confusion here might be the word “undifferentiated” which is vague at best, but isn’t meant to be that vague. There is also no diagnostic criteria for UCTD, meaning that differential diagnosis is used (the doctor doesn’t have a better explanation and uses a judgment call)
It’s the same as MCTD. Mixed Connective Tissue Disease is different in that in MCTD there are symptoms of several different connective tissue diseases present. This doesn’t occur in UCTD, where there are some symptoms of a specific connective tissue disease present.
The symptoms aren’t that bad. It depends on the course of the disease of course. The most common symptoms are joint pain and a positive ANA. Other common symptoms include arthritis, Raynaud’s phenomenon, rashes, alopecia, oral ulcers, etc. Again, not enough would be present to give an SLE or RA diagnosis for example. Most of these symptoms are not that fun. The good thing is that there is usually no organ involvement – the kidney, liver, lungs and brain are usually fine.
It will turn into a connective tissue disease like SLE or RA. Actually, probably not. Only about a third of people with UCTD end up with a specified connective tissue disease.
It will drastically affect quality of life. Controversial, but part of this is up to you. Here’s what I mean. So as in #4, only about one third of people end up with SLE/RA/etc. What about the other two thirds? Well, about one third remain with relatively mild UCTD. The last third end up in remission. The medications used are much milder than immunosuppressants (which is good!) and lifestyle changes can really affect the course of the illness moving forward. UCTD does not mean we should give up!
I hope this helps clear a few things up! I would love to hear what my fellow UCTD warriors think and if anyone has run into any other misconceptions about it!
The other day I was walking into work and there was an older gentleman, probably in his late 70s, looking for the hearing clinic. Honestly, I don’t pay attention to the dozens of businesses in the building, so when he asked I said I wasn’t sure where it was. He ended up not following me into the building. When I went in, I quickly looked at the directory, and then ran back outside and down the street to get him. I went with him to the hearing clinic, before going down to my office. He was very grateful, and I felt good. I also had been in a lot of pain that day (my hip) and I noticed (awhile later) that the pain had drastically reduced. Why did this happen? Because my body released endorphins when I performed an act of kindness.
Endorphins are literally our bodies natural pain killers. We produced around 20 or so different types of endorphins, and they are all released by two parts of our brain – the hypothalamus and the pituitary gland – when we are stressed or in pain. Endorphins bind to our body’s opioid receptors which then gives us some pain relief. Opioid medications basically imitate endorphins when they enter our bodies, also clinging to the opioid receptors. And actually, when we take opioid medications, our body produces few endorphins because it doesn’t think it has to produce as many anymore (part of the reason it is easy to become addicted to opioid medications). Now, you might be saying, if these endorphins are so good, why am I in so much pain? Why would I need pain medications, including opioids, if these endorphins actually worked?
Here’s the thing, endorphins do work pretty well. There is a reason our bodies evolved to have them. Chronic pain is weird though and can affect many areas of our lives, which can increase pain (biopsychosocial approach) that make it more difficult for endorphins to work. Also, when we have chronic pain, we end up doing a lot of things that are the opposite of what would be helpful. We lie in bed all day, we withdraw from others, we become depressed making it hard to laugh for example, we stay inside, etc. Doing a lot of the opposite actually helps to produce more endorphins. Here are some examples of activities and practices that cause our bodies to produce more endorphins naturally:
exercise – particularly moderate exercise. I find I always feel good when I work out. There is an uphill walk called the Coquitlam Crunch when I live and I swear it is an endorphin boosting activity (probably why a lot of locals do it). However, if you struggle to exercise, any activity to start will likely get some endorphins going.
acupuncture – I get acupuncture at least once a month because it reduces my stress, so it makes sense that it produces endorphins (a lot of people find it helps to reduce pain as well)
meditation – I’m a big meditator, if you follow this blog you know that. This is another activity that I always feel good after.
Sex – I mean it’s physical activity and an enjoyable activity so it totally makes sense this would produce endorphins.
Music – singing, dancing or playing an instrument gets the endorphins going. So, if you’re in the kitchen, blast some tunes and take a few moments to dance! (I love kitchen dancing). Every time I play the piano I feel really good.
Laughter – as I mentioned, if you have a low mood this can be difficult, but perhaps turning on a funny movie or calling a friend who always makes you laugh might be helpful. As a therapist, I try to utilize laughter in client sessions as much as possible (and appropriate).
Sunshine – yep, getting outside, even if it’s just to sit on your deck or balcony, or sit in a park for awhile. In the winter, investing in a UV light. All of this can boost our natural pain killers.
Aromatherapy – particularly scents of lavender and vanilla. I often use lavender in my diffuser, which I always have on when I do telehealth counselling sessions at home. It’s a scent that is meant to help you feel more relaxed, and understanding how this work (endorphins!) is helpful for me at least.
Altruism – so my opening story is one about doing a kind act for a stranger. Likewise volunteering (I used to volunteer at a children’s hospital, and then at a crisis lines for kids and teens) also produces endorphins. Honestly, while I love volunteering, I find that even holding the door open for someone feels good. And this is why!
Chocolate -it actually contains a type of endorphin within it, which is why it helps to produce more. While I’m not saying you should eat a chocolate bar every day, the occasional chocolatey treat might be a good idea!
Okay, so I’m not saying that doing all of these things will mean you don’t have to take any pain medications anymore. What I am saying is that it can (a) reduce your need for some meds (I went off one from honestly exercising and meditating), or (b) can make you feel even better, while you still take medication. And look, none of this is a guarantee, everyone is different, and there are a lot of factors that affect our pain levels, but I’m always looking for what can help. That way we can all keep making the most of it!
Long title, I know. But nonetheless I thought I’d share some of my tips with you, plus a few other evidence-based ones I found online as I’m trying to get through this. I’m writing this exactly one week before it will be published so fingers crossed that it’s over by the time you’re reading it, but if not, then I’ll just have to accept it as it is. My flare is likely caused by a few things. First, I recently moved and moving is stressful (even a relatively easy move like I had) and stress can cause a flare. Second, I moved from a dry climate in the interior of British Columbia to the wet, lower mainland of BC. I always notice my symptoms, especially pain gets worse when it rains… but then I knowingly moved to a rainy climate (*face palm*). All jokes aside, my symptoms are increased pain, increased fatigue, really bad jaw pain, my left foot is super veiny and sore (my calf is fine though so unlikely anything super serious). How the heck can I manage all of this?
Acceptance. Yes, I know some of you are rolling your eyes or saying that this is ridiculous or unlikely to work. But I find it does. I accept that my pain is here, while knowing that the intensity changes hour by hour, sometimes even minute by minute, and I know that when my flare is over I’ll go back to baseline. Acceptance is helpful. I’ve been doing body scans and other mindfulness activities to help with the acceptance, but honestly just acknowledging my experience without getting wrapped up in it is helpful. Check out this acceptance practice.
Exercise, Movement and Stretching. If you read this blog regularly you know that I like to exercise. And I still pace myself by trying to stay consistent with what I do. I definitely increase my stretching during flares. Particularly I focus on the areas that seem to hurt or need it the most. For example, my jaw is the worst today as I write this, and I’ve made sure to do jaw stretches throughout the day. For more on jaw pain specifically, check out this podcast episode with Dr. Shirazi.
Warm Baths. I LOVE my baths. I literally take a bath 4-5x a week in the winter months. And with the rain, I’m definitely needing them. They help relax my muscles, keep me warm, and are very relaxing. Trust me when I say I could never (and would never) live in an apartment without a bathtub. Knowing what is vital to your self-care is essential to dealing with a flare. Check out this podcast episode on it.
Dressing Warmly and in Layers. Vancouver, if you’ve never been, is a city where everyone dresses in layers. It will likely rain at some point during the day, though you never know exactly when. It could also start off cool and warm up, or vice versa. So I’ve been making sure to put on 3 layers when I go out, and have a pair of mittens on me. I need to remember a hat and/or an umbrella, but I’m working on it!
Hydration. I tend to drink a lot of water. Admittedly more when I’m working. Staying on top of my water intake is so important to managing my flares and really my health! I’m trying to drink 5 full glasses of water a day minimum. I basically keep a glass of water next to me all day and every time it’s empty, I refill it. Listen to my podcast conversation with Beau Berman about gut health and how important drinking water is to him.
Omega-3’s and Vitamin D. I typically try to get these from the foods I eat. Lots of fish mostly (rich in both), as well as mushrooms, spinach, avocado and tofu and really a variety of others foods are rich in vitamin D. These are really important for reducing inflammation naturally and honestly are just really good for you! Also, Vitamin D is a way to combat with the “winter blues” (which I often get) and the more severe, Seasonal Affective Disorder.
So those are the 6 things that I am doing, but what are the 5 things that I’m not but probably should be?
Acupuncture. This is actually an evidence-based and recommended treatment for chronic pain. I’ve had it in the past and I’m hoping to start back up with bi-monthly sessions next month. Listen to the podcast episode on recommended treatments for chronic pain for more info.
Massage. I miss getting massages. It’s been nearly a year since I had one, and this is also a service I used to get bi-monthly. I’ll likely also start these back up soon as well. Clearly I need to. The benefits of massage can be heard in the podcast episode with Danielle Potvin.
NSAIDs. I’m not a fan of these drugs to be honest. They can cause stomach problems when on them long term. I’ve drastically cut back on them and only take them to supplement the more natural medications I take (i.e., CBD). If you’re aware of the risks and find them helpful then this can be a helpful solution.
Natural supplements. The only natural supplement I currently take is magnesium bis-glycinate which is a muscle relaxant (and I mainly use it when I’m menstruating). Other recommended supplements are fish oil, ginger (which I sometimes have in food and/or tea), turmeric (which I sometimes have in tea), and gingko. These are definitely worth checking out to use in addition to some of the other suggestions.
Limit Stress. Oh I can’t wait until I’m passed the stress of the move and starting up new counselling practices. The truth is there is always some kind of stress in our lives and it really comes down to how we manage stress. I typically do a good job with mindfulness, meditation, yoga, and relaxation practices. So this might just be a reminder to do a bit more of that. And also, if you are able to avoid stress then that’s a good plan (I do not plan on moving again for quite some time!).
So that’s it! 11 ways in total to manage a flare. Keep making the most of it everyone!
This is a bit more personal of a post than I’ve written for awhile, but I thought it would be important to share my thoughts and feelings about the subject. As some of you may know (if you’ve been a reader of this blog and/or have followed me on social media for awhile), I had a hip arthroscopy to repair a labral tear on my left hip last November.
The surgery lasts for about 4 hours, is totally laparoscopic. I was extremely nauseous coming out of the anaesthesia which is no fun. And then there is the recovery period. The first 6 weeks you can’t put any pressure on that side (so again, for me it was the left) so I had to use crutches to get around (which was exhausting, especially because I live alone – though I did have some friends come to help throughout). You also can’t bend at more than 90 degrees during those first six weeks, and obviously, no exercising that hip. (I found some chair workouts to at least get some upper body exercise).
Then after the 6 weeks, you can start walking again and bending, but no “exercise” for 6 months. And by that I mean there are some physio-approved exercises including light walking and recumbant bicycling as well as specific strength exercise for it, but overall it is pretty limited. And for me, well I help my other UCTD and fibro symptoms with exercise, so being limited is not overly helpful.
Recently someone posted in an online group that I belong to, that she was diagnosed with a labral tear and was still undergoing testing for autoimmune diseases. She was asking questions about the tear and treatment options including surgery. Someone else responded to her post saying that she was told by her rheumatologist that labral tears (which can occur in almost any joint) are common in people with lupus and other connective tissue diseases. (Mind you my rheumatologist and orthopaedic surgeon said nothing about this). In my own research I had found that people with fibromyalgia tend to have much longer recovery times from the surgery. In my own experience, I realized over the summer that the pain in my left hip had returned. Not nearly as badly as it used to be, I mean I can sit (including cross-legged) for much longer than I used to be able to, but it was back nonetheless. This leads me to believe that (a) I re-tore the labrum, or (b) it just never healed properly. So that’s what I responded to this other woman’s post.
So, was the surgery worth it? Would I do it again? I don’t know to be honest. Perhaps not. At this moment if someone said to me, well we can go in and fix it again, I would definitely decline. So what I learned, and I suppose what this post is about, is to do A LOT of research before committing to a surgery that some doctors think will help. Unless they are making specific connections to your illness overall, something like this which is elective (because the other treatment option is physical therapy), I would say do not jump into it. I thought I had done my research but I probably didn’t do enough. That being said, I am self-compassionate and acknowledge that I made a decision based on the information I had, and that’s okay. And I choose not to forget that it perhaps did improve the quality of my life in the long-term (remember, I can sit longer now, and as a therapist that is super important). Just many things to consider.
Thanks for reading everyone, and keep making the most of it!
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When you have a chronic illness, there is always something that is the matter with yourself. I have chronic pain every day, throughout the day, that ranges in intensity from a 1 to an 8 (though it rarely gets to an 8 nowadays). I can get tired easily, have the occasional brain fog. All that kind of stuff that comes with having UCTD and fibro. I also have to wear glasses or contacts, and not use cold medications when I have a cold because of my glaucoma. But I feel like I have choices. Give in to all of this stuff that is “the matter with me” or do what matters to me. I’m not saying that this is always an easy choice to make, and sometimes we do have to “give in” in the sense that we have to have balance where we take care of our needs, though I posit that doesn’t necessarily mean fully giving up on what matters to you.
What this is called is values-based living. You’ve probably read this on this blog before, and heard about it on the podcast if you listen to that too. It really has two parts. First, values. Second, committed action, which yes, even as Spoonies we can do (it’s about allocating the spoons wisely if you like that metaphor). I read a post in a Facebook group recently about someone asking how others with autoimmune diseases manage to go on vacations. They had recently gone on a weekend trip with family and really struggled. I replied that I have gone on trips with my family (Europe), friends (NYC, Europe, Costa Rica), and 2 solo trips (LA, Vancouver), since being diagnosed. Travelling, and adventure/exploration are part of my values, so I’m not letting my illness dictate this part of my life. However, I do plan appropriately, alternate high activity days with low activity days (think going ATV-ing one day, and then lying on the beach the next), and I only go with people who are considerate about my illnesses. But let’s back up for a minute.
We need to start by clarifying our values. “Values are words that describe how we want to behave in this moment and on an ongoing basis. In other words, values are your heart’s deepest desires for how you want to behave – how you want to treat yourself, others, and the world around you.” (Russ Harris, ACT Made Simple). I have many values including compassion/self-compassion, trust, loyalty, health (I know that may sound weird to say considering my health conditions, but taking control of them as much as I can falls into this for me), and so on. There are lots of ways to figure out your values. I often give my clients values checklists with a list of ideas. You can also think about your character strengths:
what strengths and qualities do you already have?
which ones would you like to have?
what does all of this tell you about what is important to you?
I also like the magic wand question:
Let’s say I have a magic wand and when I wave it all of your painful thoughts, feelings, memories, and sensations stop being a problem for you. What would you do with your life?
What would you start, stop, do more of or do less of?
How would you behave differently?
How would others know (i.e., what would we see and hear) that things were different for you?
Once you figure out what’s important to you, you can move on to the committed action piece of the puzzle – doing what is important. “Committed action means taking effective action, guided and motivated by values. This includes physical action and psychological action. Committed action implies flexible action: readily adapting to the challenges of the situation and either persisting with or changing behaviour as required. In other words, doing what it takes to effectively live by your values.” (Russ Harris, ACT Made Simple). I think the last part of this – the flexible action part – is really important for Chronic Illness Warriors. There are often ways we can adapt in order to live by our values, sometimes we just have to be creative. Some of this action might actually be uncomfortable for you, at least at first. It might challenge your thoughts and feelings about your illness, perhaps even your sensations. When I was in LA on my solo trip, I decided to take a surfing lesson because I had always dreamed of doing so. Surfing is super hard! And I wasn’t very good (granted it was just one lesson) and I hit the ground under the water so many times. It was such a challenge to keep going and I was super sore after. But… it was worth it. It falls into my values (adventure, challenge) and while I may not be super keen to jump on it again (I declined taking a lesson in Costa Rica) I’m so glad I did it, and yes, it was worth being sore and tired afterwards.
How will this improve your wellbeing? Feelings of accomplishment, of doing what we love to do, and keep busy with activities that engage in our values have been shown to be helpful for our mental health. And a lot of research in this area has been done with chronic illness and chronic pain. I’m not saying it’s easy, but it is worth it.
Keep making the most of it everyone!
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Plus who is this blogger and why should you care what I have to say?
I think that I sometimes give off the impression that I’m 100% fine 100% of the time, which as anyone with a chronic illness or dealing with chronic pain knows, is simply not true. What is true, is that I’ve learned several strategies over the past 5 years to improve my well-being, even on my days of struggle. Let’s take this morning (Saturday) as a write this. I had some pain in my hips (both of them). I live alone and needed groceries and don’t have a car, so I walked to the grocery store. My arms killed on the way home because I accidentally bought more than I could carry. Then the apartment building door whacked my right hip (the less sore of the two) which obviously caused more pain. And then I became angry. Like swearing, yelling, grumbling, angry. I got text messages and was annoyed at the people texting me even though they weren’t saying anything bad. Then I noticed what was happening. Was this anger helpful? No, if anything it was making my pain worse. So I took a moment, watched my breath flow in and out of my body, and calmed down mentally… and then it helped my body to calm down physically.
So… who am I? I’m Kelsey. I’m a person with lived experience. I have diagnoses of undifferentiated connective tissue disease, fibromyalgia, and glaucoma. I’m also someone who meditates daily (over 100 days in a row – my longest streak). I’m someone who has bad days, and good days. I make it my priority to have way more good days than bad ones. I’m a person who went to psychotherapy among other treatments (physio, chiropractor, naturopath, massage, etc.) and found it helpful for my anxiety and ultimately my pain. And then I became someone who went back to school to get my Masters in Counselling psychology, which I have now completed, despite the fact that I was working full time and in pain. I am someone who is committed to helping others who are struggling. And I am someone who wants to share what I’ve learned – and what I’m still learning – with all of you. I am me.
Why should you listen to what I have to say? Well, there is no particular reason and it’s completely up to you! What I can say, is that I try to bring my personal, lived experience, with research (yes I actually do a ton of reading of scholarly journal articles for my posts) and clinical experience so provide you all with different ways to improve your well-being. Take me this morning for example. Would it have been helpful to stay angry all day? Likely I would’ve had to spend it in bed and probably wouldn’t have written this post. I’ve found this to be helpful for me, so it just might be helpful for you. Along with this blog, I have other resources too. Like my podcast and YouTube channel, which you should definitely check out if you haven’t yet.
Okay, so I thought we’d end on a fun note. Two truths and a lie. I’d love to hear in the comments which one you think is a lie. 1. I have spent the evening hanging out with a celebrity. 2. I recently got a new puppy. 3. Pineapple is my favourite fruit.
My podcast topic this week was utilizing your authentic self, and next week is about evidence based treatments for chronic pain. My YouTube channel has a new video for building self-awareness (which is how I knew to calm myself this morning!). Until next week, keep making the most of it!
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