Having M.E is a bit like being the donkey in Buckaroo. Bear with me, I’m going somewhere with this metaphor. You’re carrying so much stuff around, just barely keeping it all balanced, that all it takes for the whole thing to come crashing down is for someone to try to add that pesky banjo to the mix. Sometimes the banjo can be something physical like socialising for a few hours, other times it can be something mentally draining like feeling anxious about an upcoming appointment. At some point, the already precarious balancing act will take on one extra weight too many and, just like that: Buckaroo! Everything comes crashing down.
If you suffer from a chronic illness like M.E, then you will know how profoundly these crashes can affect your mental and emotional wellbeing. It’s often in these moments where I suddenly feel completely overcome by the sheer effort of getting through each day with an illness like this. It feels like hitting rock bottom again and I’m often left wondering how long it will take to crawl my way back up this time. The constant balancing act of symptom management and the gargantuan effort to remain positive in the face of it all can often become overwhelming. It can leave you feeling hopeless, frustrated and a little bitter.
Before getting sick, we all had plans and ambitions like everyone else. Yet now we must shelf these dreams and learn to accept life as it is now: limited and so very different from what we had hoped for, with no real possibility of a cure on the horizon. It’s in these moments of negative rumination that my mental and emotional wellbeing takes a huge dip, and this is neither a fun nor healthy place to be. I must, therefore, make a continued effort to not let thoughts like this consume me and to focus on finding happiness and contentment in the small and simple things.
Over the last two years I’ve developed several coping mechanisms that help to sustain my emotional and mental wellbeing. It has been a huge learning curve and I’m not claiming to be some kind of guru, but I hope that by sharing what works for me I might be able to help others in my situation:
1. Meditation
In recent times it seems that meditation and mindfulness have become buzzwords around chronic illness, and they are often proffered as a magic cure for any and all ailments. While I do reject that particular notion, I must admit that I have found meditation to be extremely helpful since my diagnosis. I was first introduced to it at my M.E Clinic and was immediately cynical. First of all, I hate being still (which seems a cruel irony, given my current situation), I hated the weird, whispery voices that all the people on the apps used and I hated being told to “mindfully brush my teeth” or “tune into the sensations” of stroking my bloody cat. However, I was told it would be helpful in calming down my nervous system, therefore allowing my body to begin to repair itself, so I decided to put aside my cynicism and have a go.
It’s not easy to get started and, as is the case when learning any new skill, it requires practise. I’ve tried apps: Calm, Headspace, Stop Breathe Think and there are plenty of free guided meditations available on YouTube and Spotify. Stop, Breathe, Think has been my favourite because it asks you to list five things that you’re feeling in that moment and will tailor a guided meditation to your current mood or feeling. I’m not for one minute suggesting that meditation is going to cure you, but I genuinely find it helps to calm my nervous system throughout the day, particularly when I’ve overdone things and my body has switched into that “fight or flight” adrenaline mode that we hear so much about in M.E patients.
It’s not easy to ‘switch off’ your mind and it really does take some practise, but over time I’m beginning to find myself working it naturally into my day. I’m not saying I sit and reach spiritual enlightenment whilst stroking the cats, but I do find myself bringing my mind back into the present moment a lot more when it starts to run at 100 miles an hour.
Perhaps the most significant change brought on by meditation however, is my ability to focus on the really simple pleasures in my day, the ones that M.E hasn’t managed to steal: my morning cup of coffee, watching the bees at work in my garden, feeling the sun on my face or listening to the rain outside. I know this might all sound a bit twee, but it genuinely helps you to find pauses in your day to allow your mind to be still for a while and just enjoy the lovely little things. Give it a go, you might just surprise yourself.
2. Yoga
There’s a running joke amongst the chronically ill that if you say the name of your illness into the mirror 6 times, someone will appear and ask, “but have you tried yoga?!” A word of caution to anyone who ever finds themselves wanting to suggest this to their chronically ill friend: don’t. Do not. In fact, take that idea and throw it into the depths of the sea, never to be heard of again. Having said that, yoga really has been an invaluable coping strategy for me over the last two years.
My illness means that I am forced to spend most of my days sitting or lying down. This is a far cry from my life pre-M.E, when I spent all day on my feet; dressing up, dancing around and generally existing for the consumption of a classroom full of 5 year olds. And that’s even before you factor in all the running, hiking and cycling outside of school. Being still really is not my strong suit.
Sometimes, with all the will in the world, I find that I am simply too restless, too worked up, too full of adrenaline (‘fake energy’ as they call it at my M.E clinic) for meditation to be effective. This is where yoga comes in. The gentle movement means that my restless limbs get to use their pent-up energy without over-exerting, while the concentration on breathing helps to slow down my heart rate and calm my mind. There are literally millions of yoga tutorials available on YouTube nowadays, but my advice would be to do your research carefully. Look for routines that are specifically tailored for people with M.E or CFS. Some of my favourites are Sleepy Santosha, Chakrapod and Yoga, My Bed and M.E. Each of these has routines tailored specifically to people with very low energy and strength. Most involve only sitting down postures, and some can be done lying down in bed.
I particularly like Yoga, My Bed and M.E because Donna herself suffers from M.E, therefore is extremely knowledgeable about what types of movements are going to be helpful and which to avoid. It’s also important to know your own limits and avoid any movements that cause pain or elevate your heart rate. The idea is very gentle stretching to keep your muscles and joints moving, and breath work to help calm and relax you. This is not supposed to be a hardcore workout. Namastay within your limits.
3. Do a Good Deed
I’ve heard it said that living with a chronic illness is a full-time job, and it certainly feels that way to me sometimes. Every waking moment of the day is dedicated to pacing, symptom management, resting, taking meds, checking in with pain levels, resting some more. Suffice to say that we spent a lot of time thinking about and focused on ourselves. Add being housebound to the mix and life can quickly become dull and lonely.
After a particularly long spell of feeling like this, I decided to look into volunteering opportunities that could be done from home, and that might be manageable for me. I came across a charity that supports older people suffering from loneliness. The role involved committing to a 30 minute phone call each week, something I felt was manageable within my energy limits. After an interview and some online training, I was matched with a wonderful lady with whom I share a lot of interests. Just 30 minutes of my week spent focusing on someone else, on something else other than M.E felt like a gift. Not only that, it gave me a sense of purpose again and made me feel I was doing something worthwhile, and I’m at the point now where I look forward to our calls because it feels like chatting with an old friend.
As is always the case for people with M.E, it is crucial that you only undertake something like this if it is going to be manageable for you. If it’s going to make your symptoms worse or tire you out too much, it isn’t worth it. Get creative and think of other ways you could do a good deed – even something as simple as writing a letter or postcard to a friend going through a hard time will give you that lovely warm, fuzzy feeling that you took the time to do something nice for someone else. In spite of everything the world has thrown at you, making the effort to spread a little kindness out into the world feels like taking back a little power.
4. It’s Good to Talk
I know that for many people with M.E, socialising is an extremely high energy activity that requires careful symptom and time management, and often leaves us feeling completely wiped. Especially those who suffer with severe M.E, for whom socialising is often completely out of the question. It’s no surprise, therefore, that so many sufferers report feeling lonely and isolated since becoming ill.
This means that many people with M.E and other debilitating conditions often turn to social media to socialise and keep up to date with friends. It took me a long time to be comfortable and brave enough to share details of my illness online, and I know that social media can often be a toxic environment that has to be carefully managed. Having said that, I can honestly say that nothing has been quite so therapeutic, so encouraging and so helpful as getting online and connecting with the chronic illness community on twitter and Instagram.
When I started my Instagram account (@creamcrackeredblog), my sole aim was to educate the people around me on the realities of living with M.E, and to raise awareness of the mistreatment and lack of care available. What I hadn’t bargained for was the discovery of a community of genuinely cool, interesting and supportive people, many of whom I consider friends even though we’ve never actually met. I’ve been inspired, supported and challenged. I’ve had my eyes opened to issues surrounding chronic illness and disability that I was previously ignorant of, and I continue to learn from members of this wonderful, inclusive community. Not only that, I’ve also been given the opportunity to share my writing and be a part of some of the inspiring advocacy efforts of several M.E charities. I’ve found a sense of purpose again, after struggling with the loss of my teaching career, which has been invaluable in restoring my sense of self-worth and confidence in my abilities.
I know that not everyone is comfortable with sharing personal aspects of their lives online but I assure you that for every new symptom, worry or frustration you may experience on this journey, there are so many people within the online community who can relate, who will listen and are ready to hold you up and support you, or at least share photos of their pets to cheer you up.
In a community of people who suffer pain, ill health and marginalisation daily, there is so much warmth, humour and kindness to be found. It makes you feel part of something worthwhile and makes it that bit easier to face each day.
Finally, I want to say that I think it’s vitally important that we learn to talk about mental health as openly as many of us do about our physical health. Loss of health is a form of trauma. Living every day of your life feeling fatigued, in pain, housebound or bedridden, takes its toll on your mental wellbeing. It’s normal to feel sad, angry, resentful, bitter. While I think it’s important to allow yourself the space to feel these emotions, its just as important not to let yourself stay there for too long.
As wise old Dumbledore once said: “Happiness can be found in the darkest of times, if only one remembers to turn on the light.”
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Below is a list of organisations you can contact if you are struggling and need someone to talk to:
• M.E Connect, The M.E Associations’ helpline offering information and support to anyone affected by M.E: https://www.meassociation.org.uk/information-and-support-line/meconnect/ Or call: 0844 576 5326
• The Samaritans Suicide Helpline: https://www.samaritans.org/how-we-can-help/contact-samaritan/ Or call: 116 123
• Crisis Text Line is a text service for those who either struggle to speak or find the idea too overwhelming: https://www.crisistextline.uk/ Or text: 85258
• Rethink Mental Illness, this link has a list of really useful advice, information and contact information for several different helplines: https://www.rethink.org/aboutus/what-we-do/advice-and-information-service/get-help-now/