How to stop being an in-valid with Chronic Illness and become ‘valid’ again.


I think that the trickiest part of living with Chronic Illness, after having experienced good health, is rediscovering and redefining your purpose. You can achieve excellence even while sick, or perhaps, especially during times of illness, why? Because it’s all relative. For every person who has climbed Mt Everest, there is somebody equally heroic hidden away at home battling illness on a daily basis.

Chronic Illness has hugely reduced my physical capacity for the last three years. During the first year, I could barely function and even showering was difficult. I became ill quite suddenly after a virus and a stressful time at work. No one knew what was wrong with me, I physically collapsed, rapidly followed by a mental collapse and three years down the track I still have extremely unpredictable energy, reduced stamina and a host of other side effects. I can’t make solid plans, because I never know how I’ll be from one day to the next, or even one hour to the next, which is extremely frustrating. The life I had planned now seems impossible. I’ve had to mourn who I was, learn to accept who I am now, and find other ways to make my life meaningful. I’ve very much had to focus on the question, “What can I do?” rather than getting stuck on what I can no longer do.

So what can I do with limited energy and stamina? Plenty. I can do small stuff. I can do regular stuff. I just can’t necessarily do it at a regular time each day. I’ve had to let go of the way I used to operate and find more creative ways to achieve my much humbler goals. I feel like my life is a microcosm of what it used to be, so I now work with that and not against it. Lower expectations means I can achieve my goals and still feel successful.

After I let go of the old me, mourned her, remembered her, celebrated her, and sometimes bragged about her, I finally got friendly with the new me. I’d despised her for so long as a useless waste-of-space that could hardly do anything compared to old me. I wanted to call her lazy, and I found her weakness and lack of energy sad and pathetic. I had to find compassion for the new me, and I had to lift her up gently.

So. I live with unpredictable energy fluctuations, and I don’t know if that will ever change. I needed to create two sets of goals, one for if I got better, and the other for my current state of affairs. My 100% healthy-me-goals are very similar to pre-sick me, in fact, I think if I got a chance to have another shot at those goals I was working towards before my breakdown, I’d actually be heaps better at the jobs I wanted to do, because getting sick has taught me so much. So those goals sit on my list to remind me it’s still very possible. As Wayne Dyer says, we don’t know enough about the future to be a pessimist. On the other hand, my new goals are very modest, but most importantly, they’re attainable, specific, measurable and relevant to who I want to be. They are not time based, because that would not necessarily be attainable for me given my circumstances.

The difficult thing about chronic illness is it’s hard to have lofty dreams when some days you put off having a shower to preserve energy and no two days are the same. You don’t have much consistency.

Will Durant said, “We are what we repeatedly do, Excellence, then, is not an act but a habit.” I needed to work out what habits I wanted to create, and to do that I had to think about the very best and realistic person I could be in my current situation as well as who I wanted to be as I healed. The idea being that the habits grow with me as my capacity increases, so whether I’m a seedling or a sapling, I’m still on my way to becoming an Oak Tree.

To achieve a goal you need to work towards it. Every. Single. Day. This is where habits come in, and in particular mini or micro habits – underwhelming, small, attainable, bite sized pieces of the larger habits you want to develop which will propel you towards all of your goals of what you want to do, and who you want to be.

I guess with chronic illness there’s the possibility you are not going to be able to hit your micro-habits with 100% accuracy, even if they feel woefully underwhelming. For me its good just to have something solid to aim at, I have enough super easy ones in there to get a majority of ticks most days and this makes me feel successful. I try not to focus on what I used to get done in a day, because that’s not helpful!

I decided I wanted to do the following things each day for at least 5 minutes, as these are the things that make me feel like a winner in life, even in small amounts. If I was able to do more, then great! If not, so be it. Furthermore, in the grander scheme of things, I want to build on these habits once I’ve got them squared away as mini-habits:

Exercise– this makes me feel good, I can hardly do much at all but something is better than nothing. On one day I aim at 5 minutes of stretching and core exercises and on the alternate day I aim at 5 minutes of lifting weights. On a really bad day, I do one cycle, which may take me under a minute, I do this to maintain the habit in my brain so I’m still wiring and firing those habit-making neuron thingys. I count my housework day as exercise, and I always try to do more when I’m feeling good, like gardening or a short (or long) walk etc.

Read for pleasure or watch Netflix– something to get me out of my own head!

Draw/Write/YouTube– these two daily habits propel me towards my goal of getting a book published some day. I try to do one or both of these as well as keeping myself learning and inspired by others being creative on YouTube who are doing similar stuff to what I’d like to do.

Learn something new– challenging myself to get out of my comfort zone keeps my mind open and flexible. Things like trying a new recipe or learning something about health or psychology or growing plants, anything I can then implement in my life where I have an interest.

A friend recently taught me how to make Labneh, a type of cheese you make with yoghurt. I also like to grow herbs but have had to research how to grow coriander because I keep killing it! Someone gave us a worm farm and now I’m learning all about that, and you know it often scares me, it feels uncomfortable as I become afraid I wont be able to do it, which means I have to override that feeling and do it anyway. Fail my way to success as I kill coriander plants and worms. While I don’t like the feeling of starting something new, or of failing!! Boy do I feel amazing when I conquer something, whether it’s a new recipe for my partner that he really likes or going and buying those worms that I’m so afraid I might kill by doing it wrong!!

Socialise– vitally important and something that takes effort, which I often don’t ‘feel’ like but always pays huge dividends. Online friends count, as do groups. Sometimes we are too sick to get out and about and online communities can be a Godsend. You can also use the voice recording function on your phone if you want to send and receive voice messages with friends, but don’t want to be tied down to a long phone conversation.

I had at one point become almost become phobic about making face-to-face plans, terrified of the feeling I’d get when I had to cancel. I’ve always been the kind of person who hates to let people down or not do what I say I’m going to do.

As there have been improvements in my health, I’m challenging myself to make more plans, which also means challenging myself, if need be, to say, “I’m not feeling too well, I’m sorry l have to go and lay down”, or “I’ve had a lovely time but now I’m fading a bit, can we catch up again soon?” Or even at text, “Hi, I slept poorly and don’t feel too well but I’d still love to see you for a cup of tea if you don’t mind me laying on the lounge.” – that was a big one when I was sick 3/4s of the time. Funny thing is, as I’ve gotten slowly better, I’ve had to keep upping the ante, and a lot of the time I’m fine, especially if someone is coming to my home. Going out is still a big challenge, but I do make myself go to the local shops semi-unwell, and only once was it an issue. Sometimes I get into the car and sit in the driveway for a minute and then come back in the house. The important thing is to never stop challenging yourself. Always ask the worst-case scenario, which for me usually is, ‘I’ll get a taxi home’, ‘I can call my partner’, ‘I can lay in the back of the car and see if I feel better in half an hour’… I try never to see myself as ‘stuck’ anywhere without options.

Meditate– I can’t tell you how much I hate meditating and what lengths I’ll go to, to avoid it! But I know the benefits, and they’re backed up by some pretty solid science. I have some great apps and I found after doing the bare minimum of 5 minutes that I’d set myself, that I often reset the timer or app and go another 10 or even 15 minutes.

Self-care activity– being a giver means I’ll readily do stuff for others but hesitate to do something purely for myself, this may be going to the shops for a coffee on my own or watching a movie in the middle of the day.

Play– before I got sick, I’d become awfully serious. My life was packed morning to night with responsibilities and I’d lost the element of fun. I forgot how important it was to sit around whiling away time that is not planned and allocated to something I deemed ‘super important’. Playing for me now is doing things I previously considered frivolous, like mindlessly scrolling Facebook on my phone or editing photos.

Researcher Stuart Brown, MD, describes play as ‘time spent without purpose’. Brene Brown calls this an anxiety attack!! And I have to say, I kind of agree with her. Is that even allowed in the world of adulting?? Yes, not only is it allowed, its absolutely necessary for good mental health.

 Quiet time– this is my time with God. Doing a short online devotional and prayer, and sometimes just sitting in silence thinking of all the many things I am grateful for. I struggle with this one, a bit like meditation, but I always feel better afterwards, somehow more connected to the God and humanity, as well as feeling I’m cared for and valued in a personal way by a personal God who’s interested in me and my journey.

And finally, I have one day off from doing anything, which I make a Sunday most of the time. Practice the art of having no tasks to do, and a complete rest from the daily grind for at least 24 hours, once a week. God was onto something when He suggested that one.

I’m up around 6am and off to bed at 8.30pm. So I have 14.5 hours to achieve my 45 minutes worth of 5-minute goals a day (since I’m not currently working). A lot of my goals can be achieved lying in bed J. I find the tick-sheet very helpful because it keeps me on target. I still have days where I just don’t want to do any of it, but then I tell myself to chunk it down. Tick one box at a time. 5 minutes per activity. Anyone can do that, and I usually can. It really is a mind game.

Why do micro-habits work??

Mike Murdoch said, “You will never change your life until you change something you do daily”, so the secret is to create habits of your choosing, why? Because you want to change your lifeand because once a habit is created, it’s almost effortless and requires a minimum amount of willpower. Micro-habits can be used to develop character – the kind of person you’d like to be: daily ideas might be ‘reach out to help another person’, ‘read a personal growth book’ or ‘practice a daily kindness’ or ‘prayer’, or, a micro-habit can propel you towards your goals and dreams, things like ‘learning a second language’ or ‘getting fit’.

Why create a mini-habit? Because aiming high requires too much willpower, too much change – which ultimately results in failure. A mini-habit once created can be built upon. It doesn’t really matter how long it takes if you build it in such a way you can grow it and reap the reward of feeling successful. Remember that the brain will resist change without substantial reward.

All you need are small steps and a minimal amount of willpower. Keep in mind that the language of the subconscious mind is repetition. Once you’re successfully achieving your mini-goals, apart from increasing your self-efficacy, you will start believing in yourself. No more guilt or feeling like you’re failing, only success on a daily basis. Lots of small victories eventually lead to big victories. Master the mini-habit and you will find you feel free to exceed your target, but the freedom of not having to, stops the motivation being squashed to begin it. If you perceive something as arduous then you’re a lot less likely to start it or keep it up.

Finding meaning amongst it

Ultimately, we find meaning in life by discovering what unique gift we have to offer to others, and I really believe that starts with our relationship to ourselves, flowing out of our values and our character. I feel confident that by following our interests and passions, and hanging out with like-minded people, we can’t help but fulfill our purpose and find our niche in life, but we have to do this somewhat consciously, in order to be able to recognise when opportunities arise, so we can be well prepared to spring into action. Like the quote, ‘Be the partner you want to attract’, and when they come along, you will find your equal.

Be on your way towards the goals you want to achieve. Want to educate people in a group setting? Attend toastmasters and get good at public speaking. When an opportunity arises for you, you’ll be ready. This is why it’s so important to sit down and work out what you want, (as well as what you don’t want) and where you’re going, even if you don’t honestly know, you can still pick a general direction. As the saying goes, “If you don’t know where you’re going, any road will take you there”. Don’t worry about the fine-tuning, pick a place on the map of life that makes you feel excited and start heading in that direction. The rest will come together in ways you never dreamed of, as you start moving. Even if you’re in the midst of illness, the same principles apply, even though the goals may change. We need to be deliberate enough to pick a direction, yet flexible enough to alter our course accordingly, as life happens to us as we take on new information about the world and ourselves.

“It isn’t the things that happen to us in our lives that cause us to suffer, it’s how we relate to the things that happen to us that causes us to suffer.” ― Pema Chödrön


Suggested reading: Book ‘Mini-Habits’ by Stephen Guise

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