Hello Readers, Warriors, Spoonies! I appreciate your support on this blog which I’ve been running (and writing) for several years. I’m going to take a small pause on new content (other than a few Sunday videos which were prescheduled) as I worked on a few other projects (new podcast) and focus on work, which is starting to pick up again. I also find these breaks really important for my mental health.
If you have ideas for content you’d like to read about on here (or see videos for) comment on this post as I’d love to hear from you. The podcast I’m starting with my friend and colleague is on personal growth, and I’ll definitely give more details in the near future. You can always follow Chronically Living on YouTube and follow me on TikTok @kelseyleighharris for coping skills. I hope to be back soon.
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!
Curiosity and nonjudgmental awareness are important tools for healing when you have a chronic illness. I’m not saying, cure the illness, but rather to increase our pain tolerance, decrease our stress levels, and heal from any associated wounds from our illness. This becomes even more important if you have a trauma background, which as we know from all the research on the subject, is very common when you have a chronic illness. Myself included in that statement, “little t” trauma that lasted for 5 years in elementary and junior high, something I initially scoffed at as possibly being considered trauma until I learned more about what trauma is, and how it has contributed to my current health. I didn’t process any of it until I was an adult, seeking psychotherapy for pain and stress, and it eventually came out because I was having difficulties in adult friendships… all stemming back to the “little t” trauma from my childhood (let me know if you want more information on little t and big t trauma, I’ve written about them before but can again).
What should we be curious and nonjudgmental about?
I mean a part of me just wants to say EVERYTHING! Because there are definitely huge advantages to approaching life this way. However, it is completely unrealistic to think we could experience life this way all the time. We’re human and it’s totally normal to make judgments (evolutionarily, it helped our species stay alive!) When it comes to chronic illness there are 4 things I think are really important to be curious and nonjudgmental about (this is, as always, based on my own lived experience as well as what I’ve seen in clinical practice).
Our Thoughts – even the ones that are “judging” in the first place. Can you notice your thoughts without thinking about them or getting swept away by them? I find it interesting to see not only the content of my thoughts but also how they come and go, with some being more sticky than others.
Our Emotions – like our thoughts, they tend to come and go, but typically can stick around for longer periods of time. Not only should we explore what we are feeling, but where we are feeling it in our bodies. All emotions have related sensations. What can we notice about them by just sticking to the facts?
Our Behaviours – why do we do the things we do? It’s fascinating to notice how I act in certain ways or do certain things and how that changes with time or on a different day. It’s equally as fascinating to observe how my behaviours change when my thoughts and feelings are in different states.
Our Sensations – not only the ones associated with our emotions, but all the sensations in our bodies – hunger, fatigue, pain. Noticing the quality, where it is, what it feels like, even what we imagine it looks like.
How can we become more curious and nonjudgmental?
There are a lot of ways we can learn to become curious and nonjudgmental. I think of myself as being a curious child, discovering something new for the first time, and approaching whatever it is – thought, emotion, behaviour or sensation – just in that way. But I’ll be more specific:
Describe it – using only facts, not your interpretations or judgments. Here is anxiety. Here is a sharp sensation in my leg. Here is a worry thought.
Notice and Name it – I am noticing the thought that… or I’m noticing the feeling of…
Send your breath into it – rather than judge the sensation or emotion as good or bad, see if you can just pause and send your breath to the area of you feel it the most, giving it some room.
Practice meditation – in meditation all you’re really doing is noticing your experience as it comes and goes. This can be a good way to learn to interact with your thoughts, feelings and behaviours nonjudgmentally because the whole point is to be open and nonjudgmental. Check this one out.
Do a body scan – this is another way to really be open to any feelings and sensations present in your body. We often notice that the intensities change and that sensations do often come and go. Find a short version here.
Offer yourself some kindness – it’s so easy to be harsh and judgmental about your experience. Kind self-talk or kind self-touch can be useful to counteract what our minds are doing. Check out this kind hand exercise.
It can be hard to think that things can get better, but I’ve had the first-hand experience of my life improving from doing these kinds of practices and really just changing my experience of life. I hope this helps you to keep making the most of it!
Pain – both physical and emotional – are parts of life. They are also inevitable with chronic illness and chronic pain syndromes. The more we try to fight or resist our pain, the more it comes at us. So, let’s talk about why that is and what to do about it. Because, really, we can’t keep making the most of it if we struggle. Check out this podcast episode for more about this.
Despite my educational and practicum background in counselling, I hadn’t heard the term “chronic disease distress” before I attended the World Pain Summit this past October. When we think of mental health issues in relation to chronic illness and chronic pain, only anxiety and depression come up. This makes sense since the rates of anxiety and depression in those with chronic illness are slightly higher than in the general population (reports vary exactly how much, and it does depend on the condition). Learning about chronic disease distress, I realize that’s actually what I had – not anxiety – when I was first dealing with my illness and attended therapy myself. I don’t know what my therapist would have defined my condition as, but I fit the description better than anxiety or depression.
During the hight of my chronic disease distress I had the best support (RIP).
What is chronic disease distress? This is distress that comes with the stress of having a chronic health condition. It has some overlapping symptoms with both anxiety and depression, which can include anxious (catastrophizing) thoughts, rumination, sadness and crying, difficulty sleeping, etc. In CDD this is more related to the illness itself, rather than other areas of life. Now, that’s not to say that it doesn’t impact other areas of life. Having a chronic illness clearly does, but the distress all relates back to the illness at the end. If you’re able to go into remission or get a handle on your physical symptoms so they are less impactful, typically the distress goes down as well (the distress itself can also be treated but I’ll get to that in a moment).
Chronic Disease Distress doesn’t have to last forever.
What is depression? Clinical depression (major depressive disorder) is a set a symptoms that include, but aren’t limited to, feelings of sadness, worthlessness, guilt, loss of interest in activities, difficulty sleeping, difficulty with thinking, lack of energy, thoughts of suicide, and so on. Not everyone who is depressed has clinical depression (you can have some symptoms but not enough to get that diagnosis). Depression is a world wide epidemic and has a significant impact on people’s lives.
Some researchers have come up with a scale to measure chronic disease distress. This scale includes measures for emotional burden (of the illness), regimen distress (lifestyle impacts), patient-provider distress (medical gaslighting would fall in this category), social support distress, and then a total score. Only a qualified mental health professional can diagnose any mental health condition. Personally, I try not to worry too much about a diagnosis (unless a medication is warranted) and otherwise focus on the symptoms and distress facing you, me, or anyone else.
What do we do about chronic disease distress? Obviously seeking counselling/therapy from a qualified mental health professional (preferably one who specializes in chronic illness) is going to be the best route to go. Otherwise, certainly self-help sections in your library or bookstore, or listening to podcasts on the topic are good ideas. Support groups as well can be very helpful. In the meantime, personally I find mindfulness a good place to start. There is a lot of evidence of it being helpful (plus I’ve personally found it helpful!). Mindfulness doesn’t have to mean meditation, but if mindfulness is the muscle, meditation is the best exercise for the muscle. I have formal (meditation) and informal (non-meditation) mindfulness practices on my YouTube channel.
I hope this helps you understand the difference between CDD and depression. If you have questions, feel free to reach out. For now, keep making the most of it!
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If you read last week’s blog post then you know that I recently attended the World Pain Summit, put on by the Alberta Pain Society. I did this as both an allied healthcare practitioner (as a clinical counsellor) and as a person with lived experience. By the way, this event is apparently always free to people with lived experience, so keep an eye out for it next year. The summit was 3 days and had so much info, that this is going to be part 2 of a 3-part post, and focuses on the content of Day 2. Without further ado, here’s what I learned.
How Living with a Dog Can Improve Quality of Life and Well-Being in People with Persistent Pain. The first bit of interesting info was a bit of an aside – only 1% of the curricula for healthcare professionals is on pain, which means if your doctor doesn’t understand (and isn’t attending these kinds of conferences) that is likely why (definitely not an excuse – all healthcare professionals should be attending conferences/summits/etc throughout their careers). The most interesting parts of this session was the statistics on dog/pet owners (cats and other kinds of pets count):
they report lower pain
less depression and anxiety and loneliness – i.e., better mental health
improved well-being and meaning/purpose in life
Having a pet also gives you a non-judgmental listener whom you can talk to, and petting an animal releases oxytocin in our brains, which has a calming effect. Yay for pets!
This is my parents’ dog, Beau.
Is Supported Pain Self-Management Your First Choice or Last Resort?: 5 Key Coaching Support Skills.Thiswas present by Pete Moore, a person with lived experience, who wrote a book on the subject. The 5 key skills he talked about were: (1) goal setting and action planning; (2) practicing daily activities – I know ADLs can be hard for some people but they are important to well-being; (3) problem solving; (4) keeping active, moving, including stretching and exercise; and (5) knowing what to do if you have a set-back (i.e., planning for that in advance). Much of this involves having a support team, pacing, prioritizing, being patient with yourself, learning relaxation skills, tracking your progress, and resilience.
Pete Moore presented this cycle, which really resonated with me and probably many others.
How a Pain Doctor is Using Social Media to Spread Knowledge About Chronic Pain. This was a session more for healthcare professionals on how to start a YouTube channel (and why they should). But some interesting factors for Spoonies: the current quality of medical information on YouTube is very low, so please be careful and look for trusted sources (i.e., trained healthcare professionals in different areas).
My YouTube channel is for meditations (with an emphasis on pain and illness). Let me know if I should include other psychoeducational content and skills.
Trauma, Illness, and Healing – Dr. Gabor Mate’s keynote. I’ve written a ton about Dr. Mate’s work in the past, and there was obviously some repeat in content about trauma, childhood abuse, insecure attachments and stress and their relationship to chronic pain and illness. A couple of things I will share:
mind body practices (like yoga) should be included in chronic pain treatment
a lot of back pain is associated with psychoemotional stress (tension, stress, trauma)
Go to a physician for what they can do (prescribe medications, perform surgery, etc.) and find other practitioners to help you with the other parts of treatment
diagnoses are descriptions, not explanations
psychological and spiritual support is important
If you’re not familiar with Dr. Mate’s work, check out When the Body Says No (I also did a post about the book awhile back).
Challenging Chronicity Thoughts: Words Matter. So this was a mental health session, if the title isn’t clear! It emphasized that psychological factors are an important component of pain experience and are the most powerful psychological predictor of adverse health and mental health outcomes associated with pain – they even affect our treatment responses to medications, injections, physical therapy, and most other treatments. Recovery is not just about talking (to a therapist), needs and activity but also about ways of thinking. Two important notes for my fellow Spoonies: (1) pain is perceived by your brain (all in your head) but it is real; and (2) the word pain takes you right to thinking about/feeling pain (check out this podcast episode I did on externalizing language and pain/illness).
Chronicity thoughts are about way more than language. I highly recommend seeking therapy if you find you think about your illness/pain a lot.
Next week I’ll bring you a post on the information from the final day of the summit. I hope that you find some of this helpful when thinking about illness and well-being. Keep making the most of it everyone!
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One thing most of us don’t seem to do enough of is self-compassion. As children we are taught to be compassionate to each other, but rarely are we told to turn that compassion inwards. In this practice, we use our hands to help draw some kindness, compassion and love into ourselves. We truly can never be compassionate to others if we aren’t compassionate to ourselves first.
Be compassionate to yourself this week and keep making the most of it!
“While it may not be possible for us to cure ourselves or to find someone who can, it is possible for us to heal ourselves – to learn to live with and work with the conditions that present themselves in the present moment. Healing implies the possibility that we can relate differently to illness, disability, even death, as we learn to see with the eyes of wholeness.” – Jon Kabat-Zinn
If you’ve been following my blog (or podcast) for awhile, you might have read (or heard) the term well-being come up quite a bit. Because, like the above quote says, we can’t cure ourselves, but that doesn’t mean everything in our lives is out of our control. The illness(es) we have aren’t directly in our control, but our experience of having them is. This is a lot to break down, certainly more than just one blog post (and to be honest I get into this way more in the new season of the podcast – check out the first episode of season 2 here for Apple and here for Spotify). What I would like to do is just be a little more specific about what well-being is and why’s it is important for Chronic Illness Warriors.
I would say the first year to year and a half after I was diagnosed initially (so back in from Feburary 2016-sometime midway through 2017) my well-being was low. I felt like my illness took so much out of me. Initially I had a lot of anxiety, maybe some depression, and then a bad breakup, and then even when I went out with friends as I moved on I found I would have to leave early or cancel plans. I called in sick often to work. I thought a lot about the pain I was in. But things slowly started to shift as I realized my well-being (or all of this stuff) was more in my control than I thought it was.
Despite the smile, my wellbeing was much lower in June 2016.
Wellbeing (or well-being, which way is right? Depends on who you ask!) can be defined as the state of being comfortable, healthy, or happy. Note that it doesn’t necessarily say all three at once. There is a ton of research on wellbeing and chronic illness, which is not surprising since the incidence of chronic illness is constantly growing. Wellbeing often includes physical, psychological and social aspects, and often it is a little bit of each together that gives us this. It is also related to coping. How well we can cope, how we cope, our self-efficacy (last week’s blog post). Truthfully, wellbeing is an important part of being able to exist and wanting to exist on this planet. Too often I read chronic illness warriors post how they have no wellbeing and that they feel like giving up. It’s heart breaking, because it doesn’t necessarily have to be that way.
Remember, change is slow (April 2017).
Why is well-being important for people with chronic illness. Well, for one, the research has shown that chronic illness warriors who have better wellbeing show lower disability, lower pain, less mental health problems, and overall a better quality of life. Sounds pretty good, right? And please remember that doesn’t mean they don’t have any disability, pain or mental health problems, it means that it is lower than for people who’s well-being is poor. I do want to point out that achieving greater wellbeing takes a lot of work. I’m not exaggerating here either, and I think this is often where people get stuck. Because it’s easier if someone or something else (like a doctor or medication) can just make us feel better, rather than having to make changes to our lifestyle or go on a personal growth journey. This is ultimately why I have the blog and the podcast – to help provide some options here (and again the podcast this season is really diving deep into finding ways to improve wellbeing so check it out). We are looking for ways (myself included because I certainly don’t have all the answers) to improve our wellbeing, to make our lives better.
If I hadn’t worked on my wellbeing I wouldn’t be able to go on the epic adventures that I do.
My journey has been several years in the making and is really never-ending. Change is slow. But I’ve taken many steps to improve my wellbeing and continue to do so. I’m at the point where I can say I have pretty good wellbeing, and I can personally corroborate the research and say that in general my pain is lower (still can depend on the day) and in general I have less disability (have not called in to sick at my practicum in 6 months) and in general I don’t have mental health problems (though I am willing to acknowledge them when they come up because emotions are normal!). It is a journey that I hope you are all ready for.
Wellbeing is a forever journey for a chronic illness warrior.
If you feel moved by my posts, podcast and/or meditation channel, please check out my Patreon page. I love bringing content and by supporting it you are making sure that I can cover the costs of running it all so that I can keep bringing it to you. Until next week, keep making the most of it!
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I was doing a guided meditation through my meditation app (Calm) a few weeks ago and the concept of shinrin-yoku was introduced. This translates to forest bathing. I did a blog on nature therapy back in the summer I believe, and this kind of ties in with that, but I thought I’d like to explore this concept further because I find it really interesting. As someone who is not religious, and I usually say my spirituality revolves around the Force (for you fellow Star Wars fans), but in reality I find that immersing myself in nature can be a very spiritual experience. It can also be a very healing experience, more emotionally than physically (though depending on exactly how you are immersed it can be both).
Monteverde Cloud Forest, Costa Rica, May 2019
The idea of shinrin-yoku or forest bathing, is to just be in nature. To come into contact with it in a mindful way, using your five senses. Anywhere there is a forest, you can do this practice. In a lot of ways it is similar to being mindful in other experiences. For example, if you take a mindful walk, even if you live in the city. The advantage of forest bathing is that you are removed from the hustle and bustle of city life, and can truly experience nature and its natural healing powers. I know this might sound a little woo-woo to some of you, but there is a lot of evidence for benefits to both our mental and physical health. Click this link for a study on how it can improve cardiovascular health. Not only can you do this practice in almost every country, you can do it in any weather (assuming you’re not opposed to certain weather).
Monteverde Cloud Forest, Costa Rica, 2019. Isn’t it adorable?!
Like I mentioned there have been shown to be benefits for mental health, and there are many nature therapists out there. Here’s a link to find them. Interestingly, that link also has another link to training in it for therapists so now I’m thinking that might be interesting for me to take. Of course, you can also just go and be in nature alone or with a friend. Looking back at my trip to Costa Rica, I realize that my friend Nikki (check out her podcast episode here) and I did a lot of this forest bathing there. Though there were times where we’d pull out of cameras and take pictures, or we’d chat as we hiked, there were many times where we’d just walk and experience nature (yes, using all five senses) in these amazing rainforests. That whole trip was extremely healing and amazing for me, but I didn’t realize until recently that (a) I was forest bathing for parts of it, and (b) that just being away from the city was so powerful for me (and this is coming from someone who LOVES big city life).
To be honest, I’m not even sure where we were in Costa Rica, but it was somewhere near Manuel Antonio.
Here’s how to forest bathe:
go without technology, or at least, keep your phone/camera/etc out of reach (I have a small hiking backpack that is very useful for this)
you don’t have to have a purpose, the point is to just be. So walk, explore, enjoy.
take the time to really examine nature closely with your eyes
notice what the ground feels like beneath you as you walk, or even touch a tree and notice what that is like for you.
take some time to sit and listen to nature
also breathe it in, what does it smell like?
taste the air around you – likely it’s quite different than when you’re in the city
and try not to talk to anyone while you’re doing it
I definitely used all 5 senses in the Cloud Forest.
If you’ve done some forest bathing, I would love to hear your experience with it! Remember mindfulness leads to contacting the present moment, which has huge benefits on your overall health. Keep making the most of it everyone!
“Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.” – Viktor Frankl
Viktor Frankl
For those of you who are not familiar with Viktor Frankl, he is a psychiatrist, author, existential philosopher and Holocaust survivor. His belief system, which was seemingly helpful to him while he was in a concentration camp, is that life can have meaning even in the worst possible circumstances (like he himself faced) and we are motivated to continue to live when we find that meaning. Like many other existentialists, Frankl believed we had the choice to do what we wanted with the circumstances we are given, even if we don’t always get to choose the circumstances ourselves. When it comes to chronic illness – physical or mental – it can be hard to always see the choices available to us, and sometimes those choices may be more limited, but they are still there. If I am in pain today, I can choose to lie on the couch or I can choose to do some stretches. I can choose to do nothing, or I can choose to sit at the computer and write a blog post that will hopefully help someone else. Depending on your situation, your choice options will look different than mine and that’s okay. The last part of Frankl’s above quote says that “In our response lies our growth and freedom.” Personal growth, and healing journeys (check out my podcast about healing here and personal growth here) are difficult but necessary if we want to live full and rich lives, if we don’t want to give up and into our circumstances. There is so much overlap between chronic physical illness and mental illness and feelings like hopelessness and helplessness play into both. Breaking ourselves out of the cycle is the key. That often takes the form of reaching out for help, and/or using our own self-help and self-care skills to propel us forward (for example, reading self-help books about these topics can be helpful if you don’t want to or can’t afford therapy).
Meaning, choice, freedom – even with chronic illness.
Recently I have been learning a lot about Acceptance and Commitment Therapy as that is what I would like my practicum to focus on (I have to pick something that is CBT – cognitive behavioural – focused and ACT is “third-wave” and combines a lot of mindfulness). Here is a quote from the ACT training I’ve been completing.
“In this moment I’m holding my pain so that I can choose to do the things I care about.” – Timothy Gordon
Values and meaning look different for each of us. (Vienna, 2017)
ACT is very values focused and as you can see values are closely related to life meanings which stem from growth and freedom, which stem from choice. This is a therapy with a lot of efficacy for chronic pain and chronic illness because it asks us to acceptance our pain, and helps us to move toward our values. I personally accepted my pain and my illness a long time ago. That acceptance has allowed me to do more with my life, like go back to school and start a new career, travel, exercise, write a book, and help others. These are all values of mine and they all bring my life meaning. But I didn’t have to choose to move toward any of these. I could have stayed where I was, but truth-be-told, I wasn’t happy. That realization of unhappiness sent me down this growth path which in many ways started with the acceptance piece. If you’re not happy, or you don’t know what your life meaning is or what you want it to be, I would suggest just starting with your values. What’s important to you? And then what your life would look like if you were living for those values. Now, this work is of course best done in the context of therapy, but if you’d rather some reading on the subject I would say check out the book The Happiness Trap by Russ Harris.
Acceptance can lead to new realities.
Your pain and illness don’t have to control your lives if you don’t want them to. Keep making the most of it everyone.
Chronically Living 