When the Really Tough Days Come Along…
August 12, 2015 5:53 pmThe one thing I promised myself when I started this blog, was to keep it real. To be honest. To be true to myself and to get rid of some of the facade that covers up ME/CFS and what life is like living with this misunderstood condition.
I really want this space to be uplifting and empowering. To give you tools to assist your own healing and to share some of the lessons I’ve learned along my own path.
But equally as important, is letting those of you who are struggling with chronic illness right now, know that you are not alone in finding this one of the most challenging things you will probably ever have to go through. The pain. The isolation. The heart shattering, life changing stuff, that comes alongside the physical aspects of living with something like this.
Yes all I write is true. Yes it is in align with what my heart and soul believe. So much good has come out of my experience so far in terms of my own personal growth.
But are spiritual lessons and heartfelt words the full picture? Absolutely not.
Do I still have bad days? Erm…YES!
It’s true to say, that such a huge part of getting well is about connecting to your inner power and doing all you can to support your body and mind in their healing. Being grateful for what you DO have and trying to be as positive as you can in a way that lifts your soul up, whilst still allowing space for the expression of your more difficult feelings as and when they arise.
But the harsh reality, is that living with this, gets hard.
Really. Bloody. Hard.
Living day in, day out, with extreme fatigue (not to mention a whole load of other symptoms) is hard. Plastering on a smile, when all you really want to do is curl up and sleep, is hard.
Having no definitive answers about your path out of all this, and even worse, no certainty that there IS a path out of this, is hard.
Trying to keep hopeful and pick yourself up after yet another setback continues to be one of the hardest things I’ve ever had to do. The beautiful hope that you are finally getting somewhere, then the shock and heartbreak as it all crashes down around you…again.
The endless years passing, taking you further from the life you used to know, is virtually unbearable.
But what choice is there?
To survive and have a chance at getting our health back we need to cling on to hope. We need to keep digging deep and doing all we can to help ourselves and our body’s heal. The alternative is to give up, and to succumb to a lifetime of illness and a negative spiral. That has never been a real option for me. I refuse to let it be an option.
But I have my moments.
Moments where I think, I can’t actually do another day of this. And I genuinely have no idea how I will cope if the rest of my life looks like one where I can only half live in the world. One foot in one foot out. Separated. My true potential no where near reached, or even given a chance to be.
So I have to continue to use all I know, all I have learned, those wonderful lessons, to help me in taking one day at a time and getting through those kinds of days.
Allowing the feelings of self doubt, and fear and frustration, to wash over me, knowing that eventually they will settle and I’ll dust myself off….and carry on….
Emma x
Categorised in: Emma's Journey, Insightful inspirations, ME/CFS
10 Comments
Can relate entirely beautiful. I hope witting it out helped diffuse some of the horridness. It’s always constant but your hope and spirit is always strongest. Tons of love c xx
Beautiful and honest.
Thank you.
You – we – are not alone x
Sweetheart , again a tear in my eye as I read your beautiful entry, forever ploughing through your darkest times, cherishing your learnings and eloquently sharing them, bringing that reminder of hope and appreciation.
Your beautiful photos uplift me every time I look at them
Carly – lots of love back to you my lovely friend. You inspire me every day x
Janice – Thank you for your lovely feedback 🙂 I’m glad it resonated with you and you are so right, we are in this together.
Mum – I couldn’t do it without you. Love you xx
I can so relate to this Emma, in my darkest days it was the hardest thing just to… keep going, keep trusting, keep working at it. At my darkest time I felt like you, scared if I ever would get better and be able to function again. Even now I admit I still sometimes wonder if I will truly and completely shake this off. And all I can say is, I just keep going within. I keep going to my centre, my core. And I trust. And dream. Love to you beautiful Emma <3
Thanks for your reply Lucy <3
I think so many of us with ME (or who have had ME) can probably relate to the feelings I expressed in this post. It takes so much to just keep on going.
I'm so glad to say, that compared to how I was a few years ago, days where I feel like this are much less now (I used to be in a dark place 24/7) but it doesn't mean the bad days/weeks don't still come.
I didn't know whether to post this initially, as it felt so open…but I'm glad i did now because lots of people seem to be finding some comfort in knowing they aren't alone.
I love your advice about going within, to your centre, to your core. As I learn and grow more, this is what I am beginning to learn to do too. Whatever is happening externally (or in our body) that within us, our essence, will always stay strong.
Lots of love to you Lucy x
(P.s your recovery journey inspires me a lot ) x x x
Oh, YES! I just climbed out of a 3 week lull in hope that had me scraping my belly as I crawled through the murk. As I was coming out of it, I had an insight about why it happens. I think being static in anything is never really very good. We forget the light without the darkness. It’s all part of the journey and it’s really all ok. And it’s ok to express the dark parts too.
You have the most refreshing, authentic way of expressing yourself and your experience.
Thank you!
Thank you so much for your kind words and support! Messages like yours make me realise that deciding to go for the ‘just write is as it is’ kind of approach works. Lots of love to you Teresa and hope some good weeks are ahead for you,
Emma x
Thank you.
I always remind myself to have faith and hope in those working hard every day to find good diagnostic tools, identifying disease patterns and seeking an answer that can help us.x
There is every reason to have faith and hope Louise, not only in the medical profession but in yourself too. There are so many things we can do to begin to get our body in a healing state.
Much love,
Emma x