Skip to main content

One Year

12 months. A year. And how things can change in a heartbeat. We never think it is going to be us, but we just hear about others suffering and think “oh, that’s sad”, and just kind of carry on. I realise we can’t take everything on our shoulders and I’m not saying we should at all, but we don’t know what it is to be “normal” until things shift. It has taken me 12 months to re-establish what it means to be “normal” and the biggest realisation I had is that it is not this blanket term that we think encompasses the majority. Nor is it a template for us to all work around and mould ourselves into. The reality is, this kind of normality does not exist. But what does exist is what exists for us daily, in our personal experience.

I’ve been working on finding my new kind of normal and a way of living that suits me. It’s not always easy and on a rough day, it can be hard not to be angry and draw comparisons to others, but we are all human and just because someone hasn’t got your problem, doesn’t mean they aren’t battling with something else. This perfect societal expectation for us all to be the epitome of good health, have killer figures, porcelain teeth, amazing skin and super-charged careers is not realistic. We should be our best and that differs from person to person. I’m still learning to be accepting of my condition and my limitations, but sometimes the limitations we set are merely set by our minds. I’ve made a point this year to challenge myself and be less wasteful of the time I’m given. I’ve been travelling here and there. I was so afraid of planning a year ago and the idea of booking a trip weeks in advance scared me so much. Who ever said that things couldn’t go wrong if I didn’t have MS? I just took that as a given! Anything can happen to anyone, so I’m taking things as they come and if I’m not well enough to do something that’s ok, but I’m not going to stop in anticipation of me not being ok. I never did before and I’m going to try my best not to now.

Fear can be all-consuming. It can eat into our sleep, our appetite, our health and our minds. Anticipatory fear is even worse and that has been the thing I’ve been coming up against this year. The more fearful I become, the greater the stress I feel, the more likely I am to relapse, so it’s been a lot of mind training this year for me and that’s where all my mindfulness training has come in. Even simple things like drinking a cup of coffee or sitting without the TV on have been moments of taking the time to sit with myself, like I would with a friend and just be. We are turning into human-doings rather than human-beings and I’ve been making a real effort to simply be. That’s something that is going to require a lot of practice but that I’m willing to invest time in, because if I don’t look after myself, how can I be there for anyone else fully, with true loving and compassion?


So, what will be will be and I won't be waiting for the worst, but living for the best. Here's to a year full of joy, success, resilience and self-compassion for one and all. 

Comments

Popular posts from this blog

3 Years

When I got the letter through the door, it struck me how once this very small intrusion would have made my heart stop. I would probably feel sick, be filled with trepidation and probably just let my mum open it. Then that would cushion the blow. Nearly 7 years post-diagnosis, I'm a little calmer about those formal envelopes that follow me into my home a few times a year, taking the approach that there's nothing to deal with until the letter is completely read. On the letter; after another annual MRI, 3 years after my infusion treatment (Lemtrada), there's been no worsening in my lesions and no new ones. And I just thank God. The optimist in me wants to jump up and down, and bounce off the ceiling cheering. The realist in me tells me this was really lucky and it's a miracle and this will change one day, that this is temporary. I'm working to sit somewhere between these two voices; being grateful and working to keep myself well. Stress levels are the main reason I was

My Medicine

Hello! It has been quite some time and I supposed a got a little kick in the backside from my mum who was asking the other day what had happened to my blog and if I had deleted it. After that call, I’ve been having a real think about why started this blog in the first place, and ultimately what I was trying to do was document a journey that fellow MS warriors could follow to see what another person’s medical and personal journey looked like. I’ve been writing for the MS Society which has been a great chance to connect with the community, but I have found myself slipping away from my own blog. When I started writing, I wanted to make sure that those who were newly diagnosed could hear frankly what a real experience looked like, but also walk through my mental processes as I worked through it myself. It isn’t all doom and gloom as it was told to me 5 years ago (and still can be I may add) but it is about learning the patterns of your body, utilising some handy tips and trick alon

Lemtrada, 2: 2/3

This is really short one as I feel really shattered after a 45 minute cannula ordeal that was literally so unnecessary and distressing. It has left me feeling really exhausted and it shook up a massive nervous reaction. I am otherwise really fine, the Lemtrada response itself was Alhamdulilah, as good as it could have been and I've seen signs of the rash and hoping to see more tomorrow so I know I my body is responding positively to it. I am ever grateful, and fortunate, but for today these are all the words I have. Keep me in your prayers and thoughts and find light in every space you can. Here's a poem I wrote that sums things up and I hope tomorrow my words will be full of more zest and greater strength inshallah: بردو قلبي And tell me something that washes over me Like ice water and a sea breeze Enough to take edge off the now And bring the light back to my eyes Cool the burning in my veins And loosen the knots in my lashes. Heal these