When you’re unfortunate enough to have been diagnosed with a chronic illness getting the most out of life and living well can feel completely out of reach. Every day you live in hope that you will start to see an improvement in your condition so you can properly enjoy all that life has to offer again but the longer you have your illness the more you begin to realise that this is your life now and accepting that harsh reality is extremely frustrating and overwhelmingly tough.
It’s no secret that I’ve struggled with living with MS as it’s completely changed my life. All plans for my future have had to change, in fact, writing this post about the many hurdles I face living with a chronic illness made me realise the extent of just how different my life is now and living well has never been so hard, especially on the I-can-barely-get-out-of-bed days when it seems there is very little to feel positive for.
The important thing though is that I refuse to stop trying, I won’t give up and neither should you. As relentless as this illness is there is always something worth fighting for and plenty to be grateful for and I’m determined to live life as well as possible, even when I feel horrendous to my core.
I really wish I had all the answers on how to best survive a chronic illness so you can feel like you’re totally winning at life (I’m pretty sure I’d be rich if I did) but even though I don’t think I’ve quite mastered the art of feeling awesome with a chronic illness just yet I’ve definitely picked up a few hints and tricks on how to live well and make the most out of a truly undesirable situation.
I’m going to share with you what helps to get me through all the good, bad and ugly days of living with a chronic illness as well as I possibly can. These are the things I do which ensure I’m not purely existing but instead turning my new life into something positive, productive and inspirational.
I really hope that this article gives you plenty of ideas for how you can create a better life for yourself with a chronic illness. If nothing else it will show you that you’re not alone in battling to live well against the odds. We will fight this together!
So, let’s make a start:
Accept your limitations
Admit your limitations to yourself
It’s hard to accept that your life has all of these unplanned limitations now but if you try to carry on like nothing has changed then there is no way you will be able to live well, no matter what else you try to implement. Reality will soon catch up with you in a big way. Don’t bury your head in the sand as this will only make you feel worse, instead, face your limitations head on. Think about what you struggle with and what the hardest things are to deal with, write down your thoughts as this will help you to structure and understand them better.
In many cases, although an illness can be chronic, symptoms and limitations can fluctuate wildly. I’ve found this particularly hard to live with as something I manage with relative ease one day can be completely unattainable the next. I’ve had to learn to ‘go with the flow’ a bit more and I suggest that to ensure more enjoyment in life you try to adopt this approach to planning ahead as much as possible.
If you have a very rigid idea of what you are going to achieve on a particular day you are likely setting yourself up to feel terrible if you can’t manage it. Instead focus on what you would like to achieve but always have an alternative in mind. I very rarely plan ahead if I can avoid it and this definitely makes life easier. I take this approach with my blog and it makes blogging so much more enjoyable than it would be otherwise as I’m not beating myself up every time I have a bad day (or more) when I need to take a step back from it all!
Adapt your life
Once you’ve admitted to yourself what your struggles are you will probably notice that the hardest things to deal with can’t be solved just by taking a more general flexible approach to life. They will probably require big changes, some of which could be really scary to action.
I was in this situation myself when I finally admitted that regardless of how much I wanted to go back to my teaching job in reality I was just too ill. I faced my fear of having to give up a job I loved and despite all of the money worries I felt so much better once I’d adapted my life to suit my situation.
Carving out a new path in life is really hard in the short term but it makes your life so much easier long term. Be honest with yourself and start to think about what changes you may need to make now by imagining you are advising a friend who has your limitations, how would you suggest they adapted to their new life?
We are often much better at giving good advice to others than ourselves so thinking about your situation in this way can really help to prevent your judgement being clouded by guilt and self-criticism and you will find you end up being a little kinder and more honest with yourself.
Enjoy taking care of yourself
Self-care is about taking the time to focus on your mental wellbeing and I think this can be especially important when living with an all-consuming chronic illness and the anxiety or depression it can bring with it. I have so many articles on self-care saved to my Pinterest boards and they are a great source of inspiration and ideas for demonstrating how much I matter still to myself.
I’m a firm believer in the power of creativity and self-expression to improve your overall wellbeing, making time for both of these things in your life can massively lift your mood and give you a real sense of purpose in life. Since being diagnosed with MS, blogging has really helped me to express myself and has given me a much-needed creative outlet.
I also cheer myself up with quick, easy and low-energy art and crafts, which I can still do alongside my illness. I recently published an article about this on my blog with a tutorial for decorative paper butterflies, please give them a try if you’re looking for some inspiration!
The hardest thing about self-care is finding the time and making a start so make sure you plan it into your routine if you want to ensure it happens.
Focus on your physical health
When you’re chronically ill it can be 100 times harder to eat well and exercise, especially when you’re short on energy and physically restricted but it’s also 100 times more important that you try! There are many things with your health you can’t control but don’t give up on those you can.
Stopping smoking, eating healthier and taking some light exercise will benefit you massively so do what you can. A few months ago I was really struggling to feel up to any exercise but I started really small with a bit of walking and I’m so glad I did as it’s really helped improve my wellbeing too.
Build a support network
Find others to connect with
The sad truth is that when you become chronically ill that some of the people you thought would be there for you are nowhere to be seen which can leave you feeling alone and questioning your self-worth. That’s why it’s so important to make new connections, particularly with others who are trying to navigate life with a chronic illness too as no one will understand what you’re going through more than they do.
Since I started blogging I’ve connected with loads of chronic illness bloggers who are really encouraging, non-judgemental and inspiring. I’ve also worked up the courage to join a few MS and chronic illness Facebook groups and I feel like a whole new world of support has opened up to me.
Let go of the negative people in your life
When people start taking less of an interest in you once your illness becomes an inconvenience to them, let them go. Those who truly care for you will stick around, support you however they can and are worth their weight in gold.
Anyone who doesn’t make any effort to acknowledge or adapt to your illness really isn’t worth having in your life and won’t make you feel good about yourself. Their actions will feel hurtful but it’s important to remember that they say a lot more about them than they do about you.
I felt so angry and upset when this happened to me but now I honestly feel much better off knowing there are less selfish people in my life who I’m wasting my time on.
Make life easier for yourself
Part of adapting to your illness is the trial and error of trying to find shortcuts which work for you. It’s disheartening when so many things which require a lot of time and energy may be too difficult for you to commit to now but it’s much better to sacrifice them for an easier life that you can still enjoy.
I completed an activity for a fatigue management course last year where I had to keep a simple diary over a few days just noting down the activities I was doing, rating out of ten how much energy they required and how much value and satisfaction they gave. This was so useful for identifying where I was wasting precious energy which could be better used elsewhere.
I think more actively now of how to simplify just about everything in my life. I only save really quick and easy exercises, DIY crafts, toddler activities etc. to my Pinterest boards (yes I know I’m slightly obsessed with Pinterest)! If an activity isn’t realistically manageable then it doesn’t make the cut because why make life more difficult than it needs to be or beat myself up over all of the things I don’t have the energy for?
Ask for help
It can be so hard to ask for help because no one wants to feel they’re dependent on others but doing so can really simplify your life which makes living with a chronic illness so much more manageable.
Ask for help from medical practitioners, charities, friends and family whenever you need it. You shouldn’t feel bad or guilty for asking, just make sure you show how much you appreciate their support!
Set small, manageable goals
This is so important for giving you a sense of purpose and accomplishment and is a great way of gradually helping you to adapt to your illness. I have some goals that I’ve set myself for the year and I break these down even further every month to ensure they’re easy enough to achieve.
Make sure you include some fun goals too (something I need to do more of) and go easy on yourself if you can’t achieve your goals one month due to your illness flaring up; it’s really not your fault! Just take another look at them and see what changes you need to make instead.
Gratitude and staying positive
When you’re having a really bad day the last thing you will feel is positive; I still have times when I give myself a big pity party! Try to remember though everything in your life that you are grateful for and feel positive about.
After being admitted to a hospital neurological ward with a BIG relapse before receiving my MS diagnosis I quickly came to realise that although my situation was undesirable there are people living with a lot worse and it stopped me feeling quite so sorry for myself.
My son, in particular, helps to get me through the darker days of this illness as he brings so much positivity to my life.
Try keeping a positivity and gratitude diary to jot down the things you feel positive about and grateful for each day, no matter how small. I found this has really worked for me and prevents me from just focusing on the negative aspects of my illness.
When you need a little pick-me-up have a look back at some of the entries you’ve made to your diary and you will see that you’re still managing to live well with a chronic illness even if it doesn’t always feel like it!
As I mentioned earlier, the important thing is that you always keep on trying to live as well as you can. You will find you start to see improvements and probably in ways you didn’t initially imagine.
Just remember though that you’re on a journey with an unpredictable illness that will have ups and downs and you will need to accept and adapt to your changing situation before attempting anything else to feel like you are truly living well.
Wow, that turned into a long post!
I wish you all the best on your journey and hope that, by sharing what works for me, you now have a few more ideas you want to try!