Moving through Difficult Days

I want to talk to you about the times where fear and overwhelm creep in.

The place inside your mind that may include the sentence ‘What if life is always this way?’

It seems to come when you’ve had one too many bad weeks after another.

Maybe it dawns on you how many years have passed since you first got sick.

Perhaps an anniversary or milestone date is coming up.

Or perhaps, things have simply just gotten a little too much.

In my world, the last few weeks have felt hard. Really hard. And it’s lead me to have moments in ‘ The Scared/Overwhelmed’ Place.

Anxiety played a big part in my life for much of my childhood and also for periods of time in my 20’s too. But after doing many years of healing work on my self, anxiety doesn’t play a central role in my life in the acute way it once did. Yet from time to time, fear does still find a way of creeping in. It feels different to the anxiety that used to create intense physical adrenaline type symptoms, it has a different quality to it, but it is still an uncomfortable fear based feeling none the less.

Life feels stuck and stagnant right now. Two words that fill me with discomfort even just to type them out on this page.

I am naturally drawn to movement as a person, as a child I was always skipping and dancing here there and everywhere. It feels like to be active is in my blood. At my core I’m ambitious and energetic and life loving. So as you can imagine getting a chronic illness that has forced me to slow down, and at times stop completely, has tested me in ways I can’t even begin to express.

I’ve had no choice but to find a different way to be in the world as opposed to spending my time in the  ‘high achiever’ state that has always seemed to be my default setting. For the most part, I’ve made peace with life as it is right now, even whilst being so incredibly limited. I make the most of what I can do and appreciate and get so much joy from the little things in a way that I never did before.

But some weeks, things get too much, and maintaining a balanced perspective or any kind of inner zen feels impossible.

During the last few weeks one thing has happened on top of another, and as any of you who live with a chronic illness such as ME/CFS will know it doesn’t take much for the apple cart that we seem to have to take so much care to keep balanced, to be tipped upside down.

Just after Christmas I had an ME setback (due to getting a bit over excited and doing too much in December when I had a better health spell) which was followed by a fall down the stairs that resulted in breaking my foot. A week or so after that I came down with the flu (the kind that makes you realise how different the actual flu is to a cold) and a severe throat infection as a complication of it that needed a course of strong antibiotics.

I haven’t left the house since Christmas Eve other than to attend hospital appointments or see Doctors and it makes me realise that even though life has been very restricted in recent years, the little things I can do in my ‘better’ weeks make such a difference to me. Being able to have a little walk outside or having the mental energy to muse over plans for future projects. Maybe see a friend occasionally or go for a gentle swim. These things keep me sane and make the many hours I do spend at home resting more bearable.

This level, the place I’ve been at physically for the last few weeks, unsettles me, even though it’s a place I’ve been in many times before.

What frightens me when I feel as I do right now, is that I feel powerless. Like I am merely existing and life is passing me by. When the fatigue is so crushing that all you can do is rest, your world suddenly becomes so incredibly small and claustra-phobic.  I managed to keep afloat mentally, until a week or so ago, when feelings of anxiety and depression slowly crept in for the first time in quite a while.

Thoughts such as ‘how on earth am I going to get back on my feet again’ and ‘I can’t imagine ever feeling any better’ and simply ‘I can’t carry on living this way’ sneakily crept into my mind and everything suddenly just felt far too much to bear.

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When I was approaching the end of 2017 I felt uplifted and hopeful. I went to Lanzarote in the first week of December and felt the most wonderful inner shift after some really tough months. It was as if I was resetting on some level and making space to welcome in a lovely new phase of my life.

Even though the previous year had tested me so much (a close family member passed away, my healing seemed to be going at a snails pace and I’d spent far more time housebound that I even like to admit to myself) I still felt uplifted and so ready to welcome in 2018 filled with a newfound sparkly inner hope. I have been so determined that this year is going to be the year I heal, or at least made significant inroads in my recovery and rebuilding my life.

The starts of the year didn’t go quite as planned.

The unexpected falls, that happen so often when living with the uncertainty of chronic illness, can hit us hard. We have to dust ourselves off so many times and this is what can feel utterly exhausting on an emotional level.

The fear comes in when we think ‘I don’t think I’ve got the strength to keep doing this?’ Yet somehow we do.

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On Feb 13th it was  8 years exactly since I got sick again. Although I know I have learned an incredible amount since then, and have had much better times (I must remind myself of this) it fills me with sadness realising that so many years have passed and I still feel miles away from any sort of normality, stability or reasonable level of health in my life. That at present, my health situation is stopping me from living the life I want to live, including travelling, starting a family, writing more, going to yoga classes…so much. If I let myself think about it too much, it takes me to ‘The Scared Place’ inside my mind that I usually do so well at keeping in check.

The reality is, on weeks like this, sometimes all we can do is ride it out and do the tiniest of things to comfort ourselves. Such as taking a warm bath, listening to a guided meditation or even just allowing ourselves to simply be… even if that means curling up on the sofa and having a big cry.

I’m hoping, that before not too long I will begin feeling able to start doing the tiniest of things again. Bringing a bit of structure back into my days – a little bit of morning yoga, a gentle walk, maybe some time outside each day or feeling the mental energy and inclination to be able to muse over future plans and projects again.

Hope always returns eventually.

Always.

And to be honest, I don’t write these words having lost hope, I’ve been here enough times over the last number of years to know the bad patches always lessen and lift eventually, but it does feel hard. It feels like I’m living in a parallel universe to that of the life I would love to be participating in.

Being at home day in, day out, is hard. Life is so precious and I hate that I’m spending so much of mine with my eyes closed rather than being out there living and creating the life my heart has so much yearning for.

As I write these words, I want to point out, that I know the importance of ‘accepting where we are at right now’ and the teachings from thought leaders such as Echart Tolle or Tara Brach. I also know how important the power of the mind is after studying NLP and psychology in depth for many years. These philosophies are life savers for me, and have been for as long as I can remember. Even amidst weeks like this (especially during weeks like this) I aim towards anchoring back to the present moment, finding peace in the here and now, and reminding myself that life still has depth, beauty and meaning however it may look. That is always the intention.

But in this post I’m also sharing the darker, messier, real humanness of emotion that can naturally come alongside chronic illness. The frustrations and fear that naturally come as a result of not being able to do the smallest of things, spending your life inside a body that has continuous discomfort or being knocked back after making progress that perhaps took months to achieve. It’s impossible to float round in a zen like state when actually, some weeks/months can feel too much to handle.

As the years have gone on, I’ve realised that as important as it is to keep our minds in as positive a place as possible, its also absolutely crucial to allow ourselves to feel. To let the tears flow when they need to and not beat ourselves up for that.

The reality is, sometimes life is tough. And thats okay. The worst thing we can do in the darkest of times is add an extra layer of pressure by telling ourselves we ‘shouldn’t be sad’ or ‘we need to think positively’.

I shall leave this post here by reminding you to be gentle with yourself.

We are all doing the best we can.

Emma x

Update –

Since drafting out this post on my phone with my eyes half closed around a week and a half ago, I’ve moved through the darkness and intense emotions and things feel a little bit lighter again. Yes I’m still at a fragile level, the deep fatigue remains and I am still unable to do much other than rest, sleep and potter gently at home, but this morning I rolled out my yoga mat for the first time in weeks.

I felt able to gently stretch.

To open the back doors wide and feel the sun on my face.

To connect back to some inner peace.

My spirit feels somewhat lighter again and the intensity of the ‘scared place’ is lifting a bit. I still feel knee deep in this journey, and have no clear idea what the next steps are in terms of my healing… it’s a case of taking small steps and trusting that the rest will unfold. But the crying, and ‘I can’t go on’ feelings have settled. This is what I was trying to convey in this post, that by acknowledging and feeling even the darkest of emotions fully, being gentle with ourselves as we do so, it can help them to move through us and eventually settle.

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From being in the Scared/Overwhelmed Place Many times over the Years I’ve lived with M.E. the things I’ve Learned from when it happens are…

1. Fear is natural. When living with something that is as uncertain and uncomfortable as Chronic Illness, especially during the worst stages, its natural to feel scared and low at times. Trying to push these feelings away when they arise only adds fuel to the fire.
2. The best way I cope during the times when self doubt, fear and sadness arise, is to ‘be’. To literally ride out the storm. Not to expect too much from myself and to realise that it is all part of being human. Remember that feelings and emotions are fluid and eventually pass. Feel them. Release them. Write out your feelings, speak to someone you love, place your hand on your heart and self soothe… whatever feels healing for you.
3. Be extra kind to yourself. This may be the simplest of things. Wrap yourself in a blanket. Listen to a guided meditation. Sip a cup of tea. Most of all, be aware of how you’re speaking to yourself. Treat yourself as you would a friend.

• Note – Clinical Depression is very different to a patch of sadness being released or fears surfacing. If these feelings become stuck or too much to bear, please seek professional help. I have experienced clinical depression in the past and I know myself well enough these days to know when to reach out for help or when its simply a patch of time in which my body and mind are just exhausted and expressing emotion. 

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