As the New Year started I spent some time in January reflecting on what I had learnt in 2017 about managing my chronic health problem. Here are the main things that I found had the biggest positive impact on my life last year – helping me live better despite a chronic ill-health.
Seek friendship from those who are in similar situations
In my personal experience, I’ve found that it tends to be those in a similar ‘boat’ that can best understand the challenges of living with a chronic health problem and the uncertainty this brings in all areas of your life. One of the best things I did in 2017 was to find and befriend other people facing a similar situation to mine. I did this by contacting a charity that supported people with inflammatory arthritis and by taking them up on their offer to speak to one of their telephone volunteers. I also met someone who has become a dear friend on a pain-management programme I attended. Both of these individuals are now people I can check in with when I am feeling particularly low about my condition who can listen, understand my frustration, and provide the empathy to help me keep feeling positive despite the difficulties I face.
Work on your mental health: gratitude, reflection, CBT courses
At the beginning of 2017 I joined a webinar about how to set goals for the year run by the positive psychology coach, Caroline Adams Miller. I asked the question about how I could set and achieve health goals when my current reality was that I had little control over my physical health. The reply was that I could instead set mental health goals.
This sparked a new awareness in me that one of the best things I could do to cope better was to learn to manage my mindset and improve my mental wellbeing. So one of the things I thought I’d give a try was to keep a gratitude journal which I did by downloading a free app on my phone. Much to my own surprise, I found that the daily act of listing all the things I was grateful for slowly but surely started to help me cope better. It made me focus on what I had in my life rather than what I did not and also, over time, helped me identify the things I valued most so I could put more of my time and attention on repeating those activities.
I also started to do a weekly self-reflection exercise where I would note down the things I felt I had accomplished during the previous week or month, the new insights I had gained, and what I needed to prioritise for each week/ month to come. Again as time passed, the results of this were astonishing: I found myself craving the time to self-reflect each week. I think this was because it helped me feel more in charge of my emotions and thoughts by moving me from reactive to proactive and this in turn helped to re-instill in me a sense of much-needed control over my life
The 3Ps – planning, pacing, prioritisation
Planning, prioritisation and pacing – these three things have helped me enormously and changed my perspective on how much I can accomplish despite having physical limitations. Spending time planning how I will spend my time each week/month and setting small must-do actions was so helpful because it let me identify and prioritise the actions that were most important and to work on getting those things done first.
I found a great sense of achievement in being able to tick things of the list and it also helped provide me with evidence that actually some areas of my life were still advancing despite how I felt about how slowly everything was moving along. It also meant I got better at pacing myself recognising that I could probably only get a certain amount done per week due to my lack of mobility – and when you have limited mobility and energy being able to really focus on just the few key things that will make the most difference becomes such an important life-skill to learn.
Practice self-compassion and self-care
One of the main take-away messages from the Pain Management Course I attended during the year was that in order to change how I was feeling, I needed to spend more time and attention on self-care. I realised during the year that I felt better if I spent time taking care of myself, and by this I mean small acts of self-care that help to keep you feeling better e.g. having a hot bath with aromatherapy oils, or remembering to take my vitamin supplements, doing a 10 minute guided meditation. All these small daily rituals can bring a sense of self-worth, feelings of efficacy and control, and help keep an anxious mind under control.
Alongside self-care came greater self-compassion where I learnt to rebalance negative thoughts that were often about berating myself on days I felt sick. I learnt to speak to myself with a more compassionate voice and found that the small acts of self-care reinforced my self-compassion and, in turn, my confidence and general wellbeing.
Plan for joyful and happy events
I have been less good at this overall, but in the moments when I managed it, I have found so much happiness that I forget about all my problems. I think it is so important to be able to plan and prioritise a happy event – for me this is making sure that I do one of things I enjoy at least every so often. It means understanding that sometimes it is better to cope with the negative after-effects of going out in order to help you feel less trapped and isolated. I found that my self-reflection process and keeping a gratitude journal both helped me raise my awareness of what made me feel happy to alive. For me I learnt more about how happy I am meandering around certain parts of central London so I learnt to try and organise having a coffee or lunch in a nice place on the same day I had a hospital appointment in the city. This year I’ve set myself a goal of prioritising and planning one day a month where I go out and do something fun whether that’s visit an art gallery or a London market and find ways to make it happen despite my physical limitations.
Find the activities that help you get ‘in the flow’
There were countless days when I felt overwhelmed by anxiety because of the uncertainty I faced. What I found over time was that activities like cooking (there were quite few occasions over late summer where I manage to quash an anxious mind by concentrating on making jam) or watching travel vlogs from some of my favourite YouTubers would help me turn around a negative mental state. Any activity that gets you ‘in the flow’ and helps you lose yourself will silence an overactive mind that is otherwise continuously churning negative and anxious thoughts. So find that thing that gets you ‘in the flow’. .
… So these are some of the positive lessons I learnt last year about how to cope better. I wrote this note because I wanted to capture what I learnt had made a positive difference so that I could continue the same practices in 2018 and hopefully continue building on them so I can start to live better even while I am still struggling physically.