It can be hard to stay resilient when you’re contending with a chronic illness, especially one that’s not very well recognised like Mast Cell Activation Syndrome.
The symptoms can make everyday living downright exhausting plus you feel like you’re in the middle of a never-ending war. It’s a battle to see a consultant who knows about the condition.
It’s a battle to get a diagnosis. It’s a battle to take the meds or eat healing foods because you react to what seems like every flippin’ ingredient. It’s a battle to meet friends or travel anywhere because fragrances set you off.
Heck, even sitting in the sunshine – a joyful treat for most – is no longer the pleasure it once was because heat is now a damned trigger.
On top of this shizzle, you’re still trying to lead a remotely normal life, so it’s no wonder your mental wellbeing takes a hammering.
Anxiety creeps in. You isolate yourself. You become trapped in a cycle of negative thinking and the next thing you know you struggle to see any light at the end of the tunnel.
I know, because I’ve experienced all these things.
Before my health fell apart – you can read the night it all began here – I’d always, fortunately, been pretty resilient.
But I can honestly say this pesky illness has turned me upside down and tested me every which way.
For much of the past 3.5 years, I’ve been wearing a cloak of disbelief, anger, frustration, fear, doubt and anxiety, threaded with immense sadness.
And that’s okay.
Because I was, and in some respects still am, grieving for the old life I so enjoyed.
Nonetheless, with the onset of acceptance, my mindset has shifted somewhat.
Instead of getting caught up in fear and worry, which is so easy to do with such a dastardly and unpredictable condition, I’m now focused on what this experience is teaching me, rather than what I’ve lost.
And I now look at every challenge I encounter as an opportunity for personal growth be it mentally, physically or spiritually – an approach has helped me enormously.
So why am I telling you this now?
Well, it’s Mental Health Awareness Week here in the UK.
Truth be told, I was in two minds about writing this post. A) because everyone has wildly different chronic illness experiences and B) being ‘vulnerable’ and open on a public platform is, well quite frankly, terrifying.
Nonetheless, if opening up in this way gives a little hope to just one person then it will have been worth it.
So, below I’ve rounded up some of the things that have helped me on my journey so far. *Please be aware that we’re all different. What works for me may not work for you. If you have depression, please seek medical help.
BE FLEXIBLE IN YOUR THINKING
At Christmas, I started reacting to other peoples’ aftershave and perfume. It had never before been a problem. I noticed it on a commute one day and then when I was freelancing in an office I’d worked in hundreds of times before without issue. Thankfully, my editor moved me to a spare bank of desks and the meds controlled my tongue swelling but I started to worry about the implications for flights and travelling on public transport. I’m now looking to buy an air filtering mask which I can whip out in similar circumstances.
LOOK FOR THE SILVER LINING AROUND EVERY CLOUD
A few weeks ago, I was involved in a pretty nasty car accident. Someone ploughed into the side of my vehicle causing it to spin and wrote it off. “You have the worst luck,” a colleague said to me a week later. I was taken aback. I thought I’d been lucky. Yes, I had bruising, back and neck pain and had lost my car but at least I didn’t have any broken bones and was able to walk away. If the accident had happened two seconds earlier it could have been a very different story.
JOIN A SUPPORTIVE CHRONIC ILLNESS GROUP
Social media is great in the respect it can link you up with people who are in the same predicament as you and things like Facebook groups can provide some much-needed support, especially if you have a rare illness or ‘emerging/new’ condition. However, be mindful too. Some people might be in a worse predicament than you. If you’re prone to anxiety this may cause your thoughts to spiral and spark fears about deteriorating health.
RELEASE WHAT NO LONGER SERVES
Align with people who are on the same path and friends and family who support and understand you. Find coping mechanisms that work for you. If you like positive affirmations (which I do), great. If this isn’t your bag then that’s fine too. We’re all different and responsible for our own happiness so do what works for you.
BUILD AWARENESS AND PAY ATTENTION
I’m forever harping on about how beneficial I’ve found meditation but it really has had a seismic shift on my life. I use apps like Headspace and recently discovered the Muse 2 meditation headband (a review is coming soon). Regular practice has enabled me to tune into my body (which is helpful when I’m trying to pin down triggers), as well as observe and notice how I am responding to situations in other areas of my life. I’ve also become very aware of my internal chatter [see next point]. Whenever I meditate a sense of peace washes over me. Physically, it calms my stress response which plays an enormous part in managing my reactions.
GIVE YOURSELF A BREAK
While I’m always supportive and encouraging of others, I speak very harshly to myself – something that has been brought to my attention through meditation. Old narratives of not being good or worthy enough or being a failure are slowly being ironed out and I’m finally giving myself a break!
HAVE A MIND DUMP
I write down my thoughts at the start of the day. Everything. I just get it down on paper. Worries, fears, to do lists, dreams, goals, plans. Then I prioritise. The process mentally clears the space for me to get on with my day and I feel a though I’m not holding on to potential stressors in my body. I’ve now started keeping a dream journal to help understand my ‘unconscious’ mind, too. My dreams have always been incredibly vivid (and on many occasion, I’ve had premonitions but that’s another post).
I’m Miss Reliable so what really frustrates me about this illness is not being able to commit to things in advance because, a night out for a friend’s birthday, say, will very much depend on how I’m feeling and if I’m in the midst of a flare. I’ve always been notoriously bad at relaxing but this illness has at least taught me how to pace myself and not overschedule on both the work and social front.
FOCUS ON WHAT YOU CAN CONTROL
I used to have a super active lifestyle and while I know I’ll never run the London Marathon again, dwelling on what I used to be able to do makes me unhappy. I’ ve now accepted it. I’ve since found yoga and forest walks and am looking forward to discovering new hobbies in the future.
Every night I write down ten things I’m most grateful for. It can be anything from having a roof over my head and food on the table to doing a yoga class reaction free or catching up with a friend.
NEVER GIVE UP
Advances in medicine happen every day. New tests are always being developed. I remain ever hopeful.
If you think this post might help someone you know, please feel free to share. I’d also love to hear about any positive approaches that have worked for you in the comments below.
As always, thank you for reading