Tread slowly

The words won’t stick. They slide off the page as soon as they land. I’m left wondering what it is I want to say – what it is I need to say. And because I’m not sure, I stop writing and I stop trying to write. For a long time they pooled inside me instead, screaming for a way out, a release. I often felt like I could drown in their weight.

Yet, the more they built up, the more I painted. I couldn’t put into words what I was feeling, it changed day to day, but somehow the paintbrush spoke for me

I’ve blogged so little in the last few years. I often can’t find the words.

I could have drowned in the weight of the unsaid, but instead I found the best kind of release when my body was most ready to let go.

My silence from this blog has been a good thing. For the first time in my life I feel more grounded and connected to my body than ever and the key to this has been learning what self compassion really means, learning how to let my body speak its truth and to really listen to what it has to say. I won’t try to cram everything into one blog but I will make a start and I hope that these words will offer up some hope.

Because hope is everything and it’s the one thing I’d lost. I didn’t believe I’d ever walk unaided again or for longer than a few minutes without being in pain, play sports again, come off my pain meds or slow down this damn disease. But I am well down the road of doing all that and more now.

Healing

Healing isn’t linear. It’s ups and downs – much like life really. Some weeks it feels like I’ve gone backwards but I’ve had to learn to trust that my body is where it needs to be and there will just be days like that. By showering myself in kindness and compassion my body continues to reward me.

At times I don’t recognise the person I am today and yet at other times she is so familiar. I have so much I want to write and say about the journey I’ve been on in the last year but this blog would turn into a novel so I will save some of it for another time. The last few years have been so difficult but in many ways I am so thankful for where MS has led me. It’s forced me to properly look at myself, to face my deep-rooted fears and fight back against past traumas that had wrapped themselves around every part of my existence until I could no longer breathe under their weight. There is a big difference between being able to talk about the trauma and upset in our lives and then being able to actually feel it and process it. It’s easy to smile and be positive, it’s much harder to stop and permit yourself to feel.

The bravest thing we can do is to allow ourselves to be vulnerable and not to feel like we have to smile through the pain, to put on a brave face. Being brave is allowing ourselves to feel and to process difficult emotions

I’ve been told many times that I’m so positive in the face of what MS has thrown at me, but we all process pain at a different rate. When I was diagnosed and again when I suffered from a severe relapse a year later, my way of coping was to shut out the pain, go into denial and instead focus on gratitude and finding joy in the everyday. The grief came later – my way is to process things once I’ve moved forward into what feels like a safer space. Both are valid ways of coping.

It’s why I always call out toxic positivity. If we live through a painful experience then at some stage we have to permit our body to process it. If we don’t then it stays painfully contained and over time life continues to happen and that pain multiplies in our system until our physical and/or mental health breaks down. The bravest thing we can do is to allow ourselves to be vulnerable and not to feel like we have to smile through the pain, to put on a brave face. Being brave is allowing ourselves to feel and to process difficult emotions and if that means the outward world thinks we’re not behaving in a ‘positive’ way then so be it. People will always have an opinion on how you should or shouldn’t cope with your illness so try to stay true to your own voice instead.

Keeping hope alive

It was hard to even imagine the concept of healing a few of years ago. You hear the word chronic illness and you get told there’s no cure and healing seems like an alien concept. The only healing most of us with MS expect and hope for is that which happens immediately post relapse. So for 2 years as I continued to worsen after a bad MS attack, that hope of healing was slipping away.

Yet deep down I hadn’t given up. I started to spend €200 a week on a mix of different types of physiotherapy (see here). I knew that to get stronger and stand any chance of working again or living independently this type of physio was vital and I was incredibly lucky to be able to afford to pay for it because Ireland’s neurology services and rehabilitation services are woefully underfunded, but that’s a topic for another day.

I did eventually get offered HSE-funded in-patient neurorehabilitation – 3 ½ years after my spinal relapse! And my God did it make a difference to me. One week I was walking 5 minutes, 5 months later it was 20 minutes, then 60! There are of course all the days in between where fatigue and pain sends me tumbling back but that’s okay – I know I’m not back at the start and the more of these ups and downs I’ve had, the more I realise they’re just part of the process. There are the active days and then the days my body is more fatigued as it processes the new movement and builds new muscle.

Listen to what your body tells you

There is a lot I still struggle with, like fatigue and pain flares and not being able to work more than a handful of hours as a result of both. But I’m grateful to even be doing that and if I’ve learned anything it’s that it’s the smallest and slowest of steps that cover the most distance when you live with this disease.

Living in the present is easy when we feel good but how many of us get cross with ourselves when we can’t make it off the couch?

Living in the present is easy when we feel good but how many of us get cross with ourselves when we can’t make it off the couch? If there’s one thing you take from reading this blog, let it be promising to be more compassionate to yourself. Learning self compassion has been the most healing thing I’ve done.

Healing is about being patient with yourself, being kind and learning to be okay in the present moment whatever that looks like for you. It’s about being aware of stress in your body. Allowing your body to process what’s happening to it, be that physically or mentally, and no longer hiding from those hurts even if they’re painful to process. It’s about staying grounded in the moment while also letting hope soar, because when that takes flight who knows where it might lead you.

I am so much more than my disability and it’s only through learning that and showing myself and my body the compassion it deserves that I’ve really started to understand healing is about so much more than taking a few extra steps every week, it’s also about being okay with taking a few extra naps when I need them too.