Life with a chronic illness is like driving down a mountain road. You drive carefully, fearful of losing control and veering over the edge. Raise your hand if your life is marked by ‘careful’ habits to accommodate the monster that has invaded your life?
Maybe, you have a special bag that you never leave home without. When I worked full time as a teacher, my care kit included pain meds (of course), an extension cord, adapter and heater pad, gloves, socks and a blankie to cope with my low tolerance for cold.
Of course, we spoonies, do have to be careful. But at what cost? We’ve swapped the sweetness of spontaneity for the shield of safety. I want to share a few simple ways to spice up your life so you can thrive rather than survive.
Table of Contents
First, you need to come face to face with the enemy in your body and accept it. You have a simple choice to make – yield to it or conquer it as best you can. This is not easy but it’s the first step to living life on your own terms.
So the next time you’re invited to a weekend away with friends, don’t automatically decline. You may do it out of consideration for your friends who may not know how to cope if you may get sick and need urgent medical attention. I urge you. Take the necessary medical precautions and go have a good time. It will give you a much needed break from the suffocating comfort net of home.
2. Date Yourself
Do you ever feel stifled by the rigid routine you follow day in and day out? Perhaps you’ve started to adopt a routine that never varies from one day to the next. Maybe you find that it is mind numbingly boring and you yearn to do something different, something that’s not so fixed.
Ever thought of Me-Dates? To do something fun by yourself away from home. Because you may want and need a ‘date’ when your friends are at work or unavailable. Plan daily, weekly or monthly ‘ get out of home’ dates. But, suss out the venues carefully so that you can make a quick exit if you need to.
The possibilities are endless:
- Coffee dates
- Photo exhibitions
- Taking a caricature drawing or cooking class
Depending on how ill you are, this may be hard to organize. But enlist the help of your support network and just do it. But, what if you’re forced to self isolate for health reasons, how do you date yourself then?
Take advantage of virtual tours. Take a peep into Buckingham Palace or browse the French classic painters at The Louvre. Even better, take a white water rafting adventure or go skiing in Switzerland. Read 10 virtual tours of the world’s most famous landmarks for more information. Do some research and find a few virtual tours that appeal to you.
Go on, take the risk. I guarantee that the experience will be life-changing.
3. Don’t Quit Your Job
There is no date stamp or time line with a chronic illness. You know, right off the bat, that there is no cure and that you simply have to live with it. When you’re newly diagnosed with a chronic illness, you may be tempted to quit your job and just ‘enjoy whatever time you have left’ at home.
I know I did. At the time of my diagnosis, my son was just 2 1/2 years old. All I wanted was to just feast on our precious moments together without work getting in the way. But my doctors encouraged me to work as long as I could. I’m so glad I heeded their advice. Have you ever heard that work is therapeutic? Well, here’s why.
Reporting for work daily allows you to shift your focus from your health issues to the tasks of your job. It gives you a sense of purpose as you have the chance to dress and get made up to show up for work. The opportunity to socialize with your coworkers also helps you to forget about your illness for a while.
The other big plus is that you may be part of the company’s health insurance program which will go a long way to helping with your medical bills. So, my advice, work as long as you’re able to without risking your health.
4. Get Creative
Have you ever looked at yourself in the mirror on a good day? Maybe, your hair, make-up and outfit are all en pointe and you look and feel like a million dollars. But you, and only you, know the anxiety and stress you live with courtesy of your chronic illness.
A simple way to cope is to get creative. According to this post on Forbes,
“engaging in creative behaviors (even just coloring in those trendy adult coloring books) improves brain function, mental health, and physical health.”
Start a craft, design book covers, write poetry or paint but just get your creative juices flowing. Creating something beautiful is an uplifting and joyous experience.
I know how wonderful that feels since I started my blog when my chronic condition made it impossible for me to continue working. It has infused my life with meaning and purpose and has been the best thing I have ever done. It definitely takes my mind off the pain and inflammation of frequent flares.
5. Be Positive
Research is clear about the health benefits of a positive mindset. So go ahead and create a positive mood board to bolster you on your down days:
Think of a mood board as a kind of wish list. Place items on it that inspire positivity. Some ideas are:
- Inspirational quotes
- Bucket list pictures
- Encouraging words and phrases
An inspirational mood board is a powerful tool to lift your spirits on the bleakest of day. Check out this YouTube video on how to create a mood board in Canva:
So, there you have it. Five practical ways to live an amazing life in spite of the chronic illness you live with.
*Note: This article is meant for educational purposes and is based on the author’s personal experiences. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols.
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I raise my hand to be counted amongst your cautious chronic illness mountaineers.
I love the positivity of your blog. I am sure we could all take a leaf from your book when it comes to positive thinking.
From your illness history, I am astounded that your manage to stay so cheerful. You are an example to us all. I have MS, but that would seem to be a walk in the park alonside the health problems you face every day.
For many years, my mother has drilled into me the need to “think positive” and for a long while, I didn’t really know what she meant. I do now, since I was disgnosed with multiple sclerosis.
I love your idea of a positive mood board which I think I have been doing anyway, without knowing it.
I also like the idea of being creative which should be a challenge because I don’t believe I have a creative bone in my body.
But, to overcome brain fog, we MUST learn a new skill and this might be the ideal candidate.
Blimey! A stroke at age 14? That is seriously bad luck.
I love some of your comparisons, Careering down a mountain track. Yup, sometimes it can feel like that although my lack of imsgination would never have come up with that analogy.
I think we all go through a period of denial. I know that I refused to accept that I had MS for many months after my diagnosis. But it was better to recotgnise the MonSter and prepare for the fight.
In a strange way, I was lucky. I didn’t need to decide about quitting work. The company went bust and so my decision was made for me. Which was something I would need to get used to. Having my decisons made for me.
Thank you for reading, Stephen. Yes I think it’s normal to go through that process as human beings. I am sorry you lost your job, it is still difficult, even if it was ‘decided’ for you. I hope you’re coping decently.
Really fab tips here! I love the me-dates, something I have only very recently discovered. Time off and away from home, most of them involve my camera, sitting in a hide by a lake hoping for a Kingfisher 😊
Thanks Kat, Poovanesh shares some great perspectives too, I think! Me-dates are awesome. And sitting by a lake even more awesome!!
Oh, how I wish I had stood firm and not quit my job. It is probably my biggest regret.
I think this really goes two ways. I am glad I quit my job as it really turned my life around health wise. It really is a super fine balance, isn’t it?
Love this post! There’s always hope and a chance to live better with our conditions, and hope is a key part of self-care and healing. I’ve naturally done several of her suggestions and they’re all things I endorse. While I didn’t define them as ‘me-dates’ I do something similar – pre-covid I’d often plan trips to the city to see friends, but often would have open time as well, where I’d explore interesting spaces or things and just celebrate being out and about!
Yes we all have our different ways to cope, and I loved hearing her perspective! My list may look slightly different, but these are some fab tips that help so many out there, too.
These are fabulous tips- and I’m so glad that one of them was the “me date”. Sometimes it’s easy to forget that we need to take the time to nurture ourselves. I’ve been talking about a mood board for quite some time – I think it’s time to do it!
Yes definitely! Me-dates are such fantastic ways to recharge, aren’t they? 🙂 And the best part is all our me-dates look so different and are so adaptable! Yes a mood board can be very inspiring. Do share yours if and when you make one, I’d love to see it!
I LOVE this post, you’ve shared some fantastic ideas! I actually used to do ‘me dates’, just doing things on my own that I enjoyed like catching a movie at the cinema, going for a drink in a cafe, taking a day trip etc. All of that went by the wayside when I got sick, and I wouldn’t even think of doing anything nice any more, partly as it’s not really enjoyable when you’re sick and in pain. BUT there are ways around it, doing smaller things, staying closer to home etc. When the pandemic is over (hopefully sooner rather than later!) I want to prioritise getting out to do small enjoyable things by myself and with my mum too; even just one little thing a month is better than nothing to give life a little more variety and meaning and sense of fun (I think I’ve forgotten what that even is!) xx
I like the idea of a mood board or a motivation board. I have so many ideas that I want to do, but they’re mostly swimming around in my head. This can lead to me getting overwhelmed. Use your idea to make a mood board with elements of my goals to put up in my office.
I understand what you mean about your keeping your job, but I caution, that it can’t be at the risk of your health. However, if you love it and can balance self care with it, having the income and insurance sure is helpful to lessen that type of stress. If you do have to relinquish your job, as I had to, I would say that it doesn’t have to be the end of your feeling useful and having purpose. You can recreate your purpose and find meaning. (I had the luxury of just getting to retirement age, so I have insurance and a pension, so I know not everyone has that.)
Haha i’m quite the opposite actually! I find mood boards time consuming and boring – I am perhaps less a visual person! I prefer written forms 😀
Agreed with the work thing – hence why I included the stress post to the article 🙂 But Poovanesh was sharing her perspective on how it helps her which I Think is fantastic, too! 😀 Love your thoughts too Katie about finding and recreating meaning cos that’s so true. Life is about what you make out of it, and create 🙂
A fab post. I totally agree that creativity is vital in keeping me sane. For me poetry is perfect when I can’t sleep and making jewellery is a distraction from pain. The comment about looking in the mirror to make you feel fab, but only you know your anxiety, very striking. Thanks for this!
Thanks Laura, I think Poovanesh shared some really great insights and perspectives here, too! Poetry is a win for me, too! It does help me to express pain in a cathartic manner.
For many years now I have loved “dating myself”. I have taken myself out for dinner, sat in my favourite café and drawn, taken myself to a completely different part of the city and walked a bit and then sat at the shoreline and then enjoyed the ride back home with my favourite music playing in my ears. I have loved that time – doing what I want at my own pace. Now when I think about it, in these Covid times, I’m missing doing that but I’m sure at some point I will be able to do that again – soon I hope.
Thank you for reminding me 🙂
That’s lovely Shruti 🙂 I too love spending time at a café alone eating something nice with good coffee, and working or reading. It is one of my favourite things to do 🙂 I hope you get to do me-dates again soon 🙂
Acceptance was vital to me. Took me a bit to get there and stay there. Not that I don’t have mental slumps and bad days. But I accept my health while I also pursue better well-being
And creativity is a crucial part of my existence- for expression and for fulfillment. My fiction writing is my passion and necessary for life satisfaction. My art on the other hand I am not that skilled at but I find it a great way to express myself in new ways.
I love the idea of dating yourself! Before Covid I used to always go for a coffee or occasionally to an art gallery or a short walk along the South Bank after a medical appointment. I used to love that time as it was so relaxing, and good for mental health too!
Wonderful tips and I fully agree with getting your art on. That’s honestly the only bright spot in my days. When I sit down to create, everything else fades away for a bit. Staying positive is also a must!
Gosh Carrie, I only just published this post and you’re already on it. Thank you so much for your support! 😀 Yes great tips by Poovanesh from her perspective 🙂 Art therapy is definitely beneficial in more ways than one for so many people who are suffering in one form or another. Sending love to you my friend!