In my previous post I briefly touched upon all the unprocessed anger and grief related to my life as a Spoonie, and the ways in which being chronically ill has impacted my life and broken my dreams. But the one emotion I’ve never managed to squash down and avoid is guilt. Perhaps this is because guilt is more of a blaming myself emotion whereas anger and grief are blaming something outside of myself. It’s easier to beat myself up when I’m feeling worthless, than it is to feel justified in wanting more.
I feel guilty about so many things these days including, but not limited to:
my inability to work and the financial implications of that
the burden I place upon my husband (who is also chronically ill) to care for me on my worst days
how rarely I manage to do even the simplest tasks such as preparing a meal or washing the dishes
how often I have to change or cancel plans at the last minute due to ill health
how terrified I am of even making plans in the first place because of the point above
But the guilt I find the absolute hardest to bear is how much my ill health impacts my son. As a Spoonie Parent I have to constantly navigate the fine line between pushing myself to do something that needs to be done regardless of how I feel, and saying no to things I’d love to do because of how I feel. Parenting is pretty relentless, there are so many times when I push myself beyond my limits to meet the needs of my child. Which means that I often have to miss out on the fun things in order to rest or reserve my energy for the necessary things.
Just this morning, for instance, I had to let Little Man down by staying home as he and daddy head out for the day. Several times he tried to persuade me to go out with them, and when it became clear to him that I really wasn’t well enough to go out he tried to insist he should stay home as well because he was tired (he wasn’t, he just didn’t want to leave me at home alone whilst they went out). And for the briefest moment I truly considered trying to push through my symptoms so that I didn’t have to let him down, because the guilt felt overwhelming (as did the grief about not being able to enjoy a day out with my family).
But the reality is that had I gone out with them, they’d have had to considerably adapt their day as my symptoms increased. Because today I have woken up with my back in spasm yet again, despite taking muscle relaxants the past couple of days. I also feel sick to my stomach and I have stomach cramps. And the fatigue is wearing me down, even though I have been up less than two hours and have barely done a thing. I can barely function at home, so there is no way I could have gone out with them.
But no matter how reasonable my reasoning for staying home might be, the guilt is still huge. I don’t want to let my son down. I don’t want to miss out on a fun day out. And I certainly don’t want my husband to have to entertain our son all day and then come home to have to look after me. It’s not fair, but it is the reality of life as a Spoonie Parent. It’s the reality of my life, and it makes me unbelievably sad. I know I shouldn’t be beating myself up about it, but I can’t help it. I look back at photos from when Little Man was younger, and it hurts me to see all the things we used to do together that we no longer can.
For the past 3 years, all the school holidays have been spent simply surviving. Little Man has Autism, and one of the ways that presents itself in his life is in a bundle of raw energy that needs to be channelled into something. Before I got sick I’d have planned days out, walks in the woods, play dates with friends, and even a games tournament at home. Nowadays we spend a large amount of time trying to find ways in which he can occupy himself whilst we rest, enjoying the tiniest snippets of time during our better moments doing things together, and then relying on family and friends to provide further entertainment for him. And it breaks my heart.
Don’t get me wrong, Little Man is generally a very contented little boy. Ask him how he feels at any given moment, and it’s usually happy. But I can see the disappointment in his eyes, hear it in his tone of voice, and sense it in his body language when I can’t do things with him because I’m too ill. He does his best to understand, caring for me in his own adorable ways, but he also has moments when he simply cannot understand and expects me to get better after a very short rest. Yesterday he even tried to “charge me up” by holding a cable to my leg as you would when charging a mobile phone or tablet computer, which was so sweet and funny that I couldn’t help but drag myself out of bed for a couple of levels of Plants Vs Zombies with him on the Xbox.
There is so much I feel proud of in my parenting of Little Man, such as the way I meet his emotional needs with the Autism and work with his school to get the right support in place for him there too. And I know that ultimately, despite how much I wish it weren’t this hard, he is learning huge amounts of compassion from a very young age. He is the sweetest, kindest, most caring boy you could ever hope to meet, and he is much loved by our whole community. I feel proud that despite everything we’ve been through over the past few years, we’ve created a home environment that has nurtured his individual needs and enabled him to bloom into the beautiful soul that he is.
And this is where things get really muddy in my emotions. I know I am a good mother. I’d go as far as to say I’m a bloody good mother. Which is why it hurts me so much to know that a) I am missing out on huge chunks of opportunities with my boy due to my health issues and b) I’m too ill to have a second child, consider fostering, or even just be the “cool parents” who are able to let their kid have tons of play dates and sleepovers, because they only have the one child’s needs to meet. I’m good at this parenting malarkey, I’ve always adored being around children (my mum became a childminder when I was 9), and my entire youth was spent dreaming of the day I could both work with kids and have my own.
I never imagined that my health would take such dramatic turn for the worse, effectively closing off so many doors to my dreams. But because it has, I have desperately chased different dreams over the past few years, trying to push aside the grief that was all too raw for me to feel. And I cannot help but wonder whether the choices I have made and the things I have done have directly contributed to how ill I am right now. Would I have been so sick had I not been so desperate to help other women avoid going through what I had and give new meaning to my life? Would I feel so guilty now if I hadn’t been so hell bent on fixing things in the past and instead just dealt with my emotions and embraced my life as it was? Did I waste the baby and toddler years, worrying about things I couldn’t change instead of just enjoying the years that flew by so quickly?
I don’t know what the answer is to any of these things. I imagine they are somewhere between a partial yes and a no, rather than a definite yes. But these are the things I think about on the hard days, when I have to package off my son into the care of somebody else, as I am too sick to go out and enjoy the school holidays with him. That boy adores me, and once he is home I know that we will enjoy all the little moments we have together completely and wholeheartedly. But right now? Right now, the guilt feels huge.
As you may have guessed from my previous post, I’ve been feeling pretty down about things lately. In some ways this is a huge leap forward for me, as I have spent a lot of my life trying to avoid this kind of feeling. I haven’t wanted to become a victim of my life’s circumstances, choosing instead to find a positive spin for most things. And I’ve brushed aside comments from others along the lines of, “I don’t know how you deal with all of this,” because I’ve chosen to ignore the fact that my life is far from normal in many ways. But as helpful as this has all been in helping me to keep going through thick and thin, it hasn’t been very healthy.
Because my life isn’tnormal. I suffer from multiple chronic illnesses that deeply impact my life, and that of my family. The constant fatigue, migraines, nausea, joint instability, and muscle spasms mean that I struggle with some of the most basic activities, such as taking a shower or preparing a meal. I can go days without doing either of these things, relying on my husband (who is also chronically ill) to bring me food and drink, and help me survive whilst stuck in bed. And on my worst days even lying in bed feels too taxing, as my heart races and my head spins.
Sometimes I know the cause of my most recent flare of symptoms, like a sudden change in temperature or catching yet another virus (having a young child makes this inevitable!) But at other times I have no idea what has caused me to go from functioning reasonably well to totally incapacitated, and I struggle with this aspect of my ill health the most. After all, how can I possibly hope to ease my symptoms and reduce the likelihood of another flare if I don’t know what the cause is?
This lack of control is deeply disturbing, and as a result I have clung desperately to the hope that one day (hopefully soon) I’ll gain a better insight into my health issues and figure out a way to get my old life back. But more and more I am realising that wishing for my “old life” is neither productive nor wise. Sure, it would be wonderful to no longer feel sick on a daily basis and be able to do more with my family and friends. And financially we’d be much better off if I could return to work and get out of the cruel benefits system that treats those of us who are ill as worthless (on a side note, it has now been over a year since my PIP assessment and I’m still waiting for a date for my tribunal hearing). But the point is I’m beginning to realise that I’m wishing for the wrong things.
Instead of hoping to somehow miraculously recover from the worst of my symptoms, I need to be working on accepting where I am right now. Instead of focusing on what I can’t do, I need to look at what I can do. For instance, I’m currently creating a website for our church and, due to a combination of school holidays and this most recent flare of symptoms, progress has been very slow. My anxiety over this has increased the more time that has elapsed, as I feel like I’m letting people down. Yet multiple times this week people have reminded me that I’m doing something nobody else in the church can do, and even if it takes me several months to complete it will still be a very valuable contribution.
On a rational level, I can see how flawed my thinking is. I’m valuing myself on what I can give and not on who I am, because who I am right now feels like a complete and utter failure. But instead of feeling angry at the cards I’ve been dealt, I feel angry at myself for not handling things better. Instead of acknowledging the grief related to the loss of my health and the dreams I had for my life, I’m punishing myself for not making better choices. And by refusing to accept this as my new normal, I’m denying myself the chance to truly grieve.
But I want to be able to face the reality of my situation and begin to feel all the emotions that come with that. I want to readjust my measure of self-worth so that I can celebrate the small victories (like making it out of the house) without comparing them to things other people do. I want to love myself enough to know that it’s okay to be angry about all I’ve lost, without having to justify that anger and pain. Which is why I have chosen to rebrand the blog to reflect this, giving me the space to come and share my thoughts, feelings, and experiences as I begin to explore living life in the slow lane.
Because that’s where I’m at right now, in the slow lane. Everything I do takes much more time and effort than it used to. I’m no longer planning what I’ll do next week, month, or year, and I’m certainly not able to plan out a future for myself. All the media messages about doing and being more seem irrelevant to me (and make me angry, if I’m completely honest with myself), because I’m having to learn how to do and be less. And my biggest dream right now is to feel well enough on a day-to-day basis to simply potter around the house and garden, do a bit of crafting, and enjoy a bit of company from family and friends.
Life is suddenly all about the simple pleasures, and letting go of the big dreams that are no longer possible. It’s a huge change for me, and one which requires a lot of mental effort in facing the inner demons that scream “this isn’t enough” and “you don’t deserve this”. I’ve got to learn how to grieve for the losses and redefine my self-worth as a sick person. And I’ve got to accept that there truly is no quick fix for this, it’s a journey that I cannot rush. This is life in the slow lane.
Do you believe that your body has the ability to heal itself? Or do you think that some things like age, chronic illness, and mental health problems are beyond any natural healing ability we may possess? Are some people naturally gifted with good health, whilst others suffer with no hope of a life beyond their limitations, or do we all have the opportunity to gain optimal health, whatever that may look like for each one of us?
learning to distrust the body
I’d love to say that there has always been a part of me that at some deep level believed in the body’s ability to heal, but to be honest with you that simply isn’t true. I have been sick, to some degree or another, for most of my life. I was diagnosed with Asthma aged 2, and so some of my earliest memories are of concern over my ability to breathe comfortably. Whilst I seemed to naturally outgrow this particular challenge, by the time I reached puberty other health issues had already stepped in to take their place.
My hypermobile form of Ehlers Danlos Syndrome (hEDS) had made me so clumsy I was regularly at A&E for an x-ray or because I’d got concussion or needed a wound cleaning. And once puberty arrived I was debilitated with crippling cramps, horrific nausea, and incredibly heavy and irregular periods. My teen years were spent trying to cope with these changes in my body, things I believed I had no control over, and I ended up heading into adulthood thinking that this was just my lot.
belief in others vs belief in self
As a result of this, I began to trust in doctors and medication as my only real option for any semblance of a “normal” life. And whilst there is nothing wrong with putting faith in modern medical science, there is a real danger in putting all of your hope into a medical system that still has no answers for many health conditions affecting the world today. If I had an accident and required emergency treatment, for instance, then I would seek out the help of a trained doctor. Likewise, if I developed an acute infection, I would visit my GP. These are areas in which modern medicine excel. But when it comes to chronic conditions, this is often far from the case.
My own experience has been one of seeking help from a variety of doctors and specialists over many years, always putting my hope in the chance that this doctor may finally have an answer for me, and almost always being highly disappointed. I was 17 when first diagnosed with Hypermobility, and 31 before anyone mentioned the term Ehlers Danlos Syndrome to me, explaining that my digestive health issues were probably connected to the same condition affecting my joints. But even with that explanation, there was no real helpful treatment options.
Endometriosis is another condition which has plagued my life, leading me to be on some form of contraceptive since I was 15 (most with very negative side effects), and going through no less than 4 pseudo-menopausal states in attempts to limit my symptoms. Yet you can imagine how many extra symptoms those brought up for me. So, you see, putting all of my trust in the doctors who have no real answers as to why these conditions occur nor how to adequately treat them, led to a deep distrust of my own body. If the doctors can’t even manage it, then how can I?
changing the dynamic
Which brings me to where I find myself today. After 3 decades of believing I was simply a “sick person”, whose lot in life was simply one of physical pain and discomfort, I am finally starting to challenge that belief. I’ve spent the past 3 years of my life becoming increasingly more and more debilitated, to the point where my body barely functions most days. I can trace the initial increase in symptoms to a very specific point in 2015, when a virus combined with a very busy period in my life led to a complete overwhelm of my system. And yet I know that whilst this was the tipping point, it wasn’t the start of this downfall.
A series of events following my pregnancy and becoming a parent to a child with additional needs, led me to disregarding my body’s own needs and placing everyone else’s first. This was a recipe for disaster, given my body’s natural disposition towards ill health. But I didn’t listen to my body’s needs, nor the messages it sent me through my intuition and increasing symptoms. Because I already believed that this was simply my lot in life, to suffer. And that belief goes right back to my childhood.
This ill health I have now is not a new thing, it is something that has developed over a lifetime of distrusting my body, and placing my belief in external sources rather than my internal ability to heal. And when I began to realise just how far back this goes, I realised that I had impossible expectations of what healing might look like. I was hoping for a “quick fix”, something which would take away the most unpleasant symptoms I have each day, rather than building up healing and resilience from my very core beliefs about myself. Those “quick fixes”, which are often medications to alleviate symptoms, are fine in and of themselves, but they won’t lead to long-term healing. That has to come from within.
healing to your optimal version of health
Now, before I go any further I want to make something abundantly clear. I am not proposing the idea that the body can heal from anything and everything. This isn’t some ‘miracle cure-all’. Neither am I suggesting that it is our own beliefs that cause illness. Such thinking is overly simplistic and, quite frankly, dangerous. It suggests that those with serious health conditions can simply will themselves to be better through the power of positive thinking. And that’s bullshit.
Too often those of us in the chronic health community are told that if only we did this, or changed that, we’d miraculously heal. Such recommendations, no matter how lovingly given, are dis-empowering at best and damaging at worst. People need to be believed, they need to have their symptoms respected, and their daily efforts recognised. Life is hard for all of us, and for some people that is most profoundly felt through their physical and/or mental health.
But that doesn’t mean that those of us who do struggle with our health cannot aim for our own personal version of optimal health. And that will look different for everybody. For me it means that I will always have a genetic condition that affects the connective tissue in my body, and so I will always have to adapt what I do to support that rather than aggravate it. Yoga postures must be adapted, diet must nourish without irritating, adequate rest must be incorporated into my day, and some days I’ll just have to accept that it’s a bad day and in order for my body to heal I need to honour what it’s telling me in that moment.
The same goes for my anxiety and the pain felt regarding certain events that have happened in my life. No amount of positive thinking and lifestyle changes will affect my ability to have more children. But I can work on honouring the fact that my body carried and gave birth to this beautiful child of mine, and that my love for him is enough. I can stop beating myself up for not doing more, and cherish what I can do.
healing work is sacred work
Over on instagram, my profile says that I am on a “sacred healing journey”. This is something I came up with last year, and it has stuck. Healing requires going into the very depths of your being, having the courage to face the darkest parts of your soul, and learning to trust in your body’s ability to heal. If that isn’t sacred work, then I don’t know what is.
But it’s hard to recognise the power and impact of what you’re doing, when it feels like you’re simply lying in bed, or battling through your inner demons just to make it through the day. Some days it feels like you’ve done nothing but simply survive – and that’s sometimes exactly how it is. You need to acknowledge these days as a part of your journey, but don’t let them define you. Because those days are the ones which remind you of your feelings of inadequacy and powerlessness. Those are the days which whisper that you aren’t enough, and that this is simply how it is. Those are the days you simply have to survive, knowing that a new day will come.
And when that new day finally comes, you do the sacred work. You go within, you trust yourself, and you learn to find a new way of living. Sacred work is beautiful, but it isn’t easy. It means facing those parts of yourself that you hate the most. It means working with your limitations, rather than trying to work despite them. And it means knowing that it took you a lifetime to get to the place you are right now, so it’s going to take you a lifetime of learning to trust yourself and your body. This isn’t a quick fix. This isn’t a cure. This is life.
trust your intuition, choose your tools, and find your community
Because sacred work is so hard, you need to surround yourself with the tools and community to support you along the way. Nobody can hope to do this alone. There is a reason that humanity has long sought community with those who are also on the same path – we need friends who understand where we’re coming from and will walk with us. In the past this was often limited to what was available in your local area, but nowadays you can easily connect with people from across the globe via the internet too.
Of course, the problem with this is that there can often be too much information and too many options to choose from. How do you know what will work for you? Well, I’ve found that the best way is to try out a few things and see what your gut instinct is telling you. If something feels right, go with it. But if something feels wrong, drop it, even if everyone around you thinks it is the best thing ever. It is only the best thing if it feels right to you.
I experienced this recently quite significantly. During meditative time (which I have always resisted), I felt an overwhelming rush of love, and realised I was far from alone. From that experience, I began to realise areas where I had been trying to control the uncontrollable. For me, this was most pronounced in my diet. Because of my digestive issues I had gradually restricted my diet more and more over many years, and I had ended up surviving on mostly dry carbs (jacket potatoes, oatcakes etc) and snacking rather than eating proper meals. I was missing out on so much protein and fat, and not allowing my digestive system the power to work effectively (and it’s a sluggish system, so it needs all the help it can get!)
As I began to consider changing my diet, bringing in foods I’d have never eaten before through fear, I started out on the Autoimmune Protocol (AIP). However a week into it I realised that it was not healthy for me. I was beginning to fear eating the wrong things, and my body was wanting less meat and a few more carbs. So I followed my gut (pun intended) and dropped the AIP diet in favour of trusting what my body was specifically asking me for. I had begun to recognise the difference between a craving (chocolate) and an actual need (carbs), as well as recognising that my body was happier eating stews and soups rather than roast dinners.
About a week later I stumbled across an Ayurveda dosha quiz, and discovered that my constitution is strongly Vata (air). The description of Vata not only perfectly described my natural characteristics, but it also explained many of my current symptoms. It even recommended eating soups and stews, to avoid food that was too “dry”. My intuition, once I actually tuned in and listened, had told me the same thing an ancient medical practice was also suggesting. By learning to trust my body’s ability to heal, I had tapped into what I needed.
Whatever tools you choose to use, and whichever community you choose to join, remember always that flexibility is the most important thing you can ever embrace. Your needs and preferences will change over time, both as you age and as the circumstances in your life ebb and flow. What works for you now will be completely different to what worked for you last year. So don’t feel as if you have to stick to something long-term if it isn’t working for you anymore. Try new things and go with the flow.
belief is everything
More than anything else, healing is only possible when you believe it is. This has been shown countless times within studies using placebos, for example. That’s not to say that the things you do or take, be that lifestyle choices or pharmaceutical medication, have no effect. Of course they do. Exercise has an impact on the body. Meditation has an impact on the body. Diet has an impact on the body. Medication has an impact on the body. It all does. What I mean is that it is your belief in the possibility of healing that amplifies the effect.
For instance, I have been seeing the herbal medicine team at my local college for about 18 months now. I have a review with them every 4-6 weeks, and we tweak the tincture accordingly. And whilst there was a small, immediate effect from taking the tinctures, it was only once I truly began to believe that this medicine had the power to change my life that I started to see real effects. And, interestingly, most of the effects have been psychological rather than physiological so far.
I’ve begun to trust in my body’s ability to heal itself, and been making changes accordingly. I removed my Mirena and became contraceptive free for the first time since my teens last Summer. And over time I have started to understand and accept that some of the very physical challenges right now are not going to vanish overnight, because my body has to rebalance itself after years and years of neglect and abuse on my part. I have hated on my body for such a long time, learning to love and trust it is a huge thing. And I truly believe therein lies my ability to heal.
How do you experience God? Do you ever feel a physical experience of the Divine surrounding you? Or is it more of a faith-based experience of trusting that God is there, even if you never feel His presence?
For me it has been mostly the latter, although I have had times in my life when the former happened too. And I’ve been desperately hoping for that overwhelming physical experience of being surrounded by love and support for quite some time. But I just couldn’t find it.
pushing God away
If you’ve been following my journey, either here on the blog or over on instagram, you’ll know that life has been unbelievably hard for us over the past few years. It all started in 2011, when the pregnancy I had dreamed of for as long as I could remember, turned into the hellish torture that 9 months of Hyperemesis Gravidarum and additional complications bring with them. During that year my entire experience of who I am and who I thought I was meant to be came crashing down.
The following year, as my baby began to grow up faster than I thought possible (how could the months fly by when a year earlier they had dragged into a seeming eternity?) I remember being so angry with God. Why had He made me so deeply maternal that all I had ever dreamed of was becoming a mother, if doing so was going to destroy my body and my soul? I had to choose not to have another baby, and it broke me.
Which led me to starting to write a book and working closely with a charity supporting women suffering from severe pregnancy sickness. I thought that maybe this was the reason for my suffering, so that I could use my writing and organisational skills to help others. And in my desperation to find a new purpose (and avoid the deep grief I was feeling), I ignored all the warning signs that this wasn’t where I was meant to be.
reaching breaking point
Which leads me to 2014, which I have described in the past as my “breaking point”. It was a year in which I should have been happier than ever, but in reality I was falling apart. I was ill-equipped for the role I ended up in, and by the time I learnt the importance of boundaries I was already broken. I remember walking to pick my son up from nursery and I would just sob the entire way there. And I remember lying awake at night, running conversations around in my head and feeling sick with anxiety over it all.
In reality, my time working to support others was more traumatic to my mental health than my pregnancy had been. And the impact of running on that much adrenaline for so long began to have an effect on my physical health too. By the end of 2014 I had been signed off work sick, and I was miserable.
Then, one evening I decided to watch a replay of one of the Thrive Moms retreats, and at the end there was the option to pray and ask Jesus into your life. I had always resisted this, given that I wasn’t sure I really fit into the Christian community. But that evening I really felt the pull to join in. So I did. And I felt an overwhelming sense of security fall over me.
I remember ending the retreat and continuing my prayer, saying to God, “okay, I have absolutely no idea what I’m supposed to be doing, I don’t know how to get out of this situation, please, show me the way.” Immediately I thought of the word, “Surrender“. I just knew, in that moment, that I had to surrender everything to God, and so I did. A week later I found out I was being made redundant from my role, and I thought, “well there’s an answer to a prayer for guidance on next steps!”
learning to surrender
I remember, at the time, it all felt so simple. Nothing seemed to sway me, as I was riding high on the experience of having felt God with me so clearly. I had experienced moments of being connected to the Divine in the past, during meditation or whilst out in nature, but I’d never received such clarity in the moment. It was like a whole new experience for me, and I was on top of the world.
It felt like nothing could bring me down. I was turned down after 3 job interviews, each time because the employer felt like I was over-experienced (I was a graduate coming from a managerial position, applying for part-time admin work). I could see their point, but I also knew that I needed to take a step back in my career. I had a 3 year old son, and I wanted to spend more time with him whilst he was still young. So I kept applying, trusting that the right job would present itself.
A few months later it did, and I began working in a charity shop. I enjoyed the work, and it gave me 4 days a week to just potter around the house and enjoy being with my family. It felt perfect and I honestly thought, “this is it”. And then I got sick.
My health began to decline rapidly until I was signed off work sick in the Summer of 2016 and never returned. I would work 3 days and feel like I had the flu the rest of the week. I would get migraines lasting for days. I would wake up and feel like I would vomit every time I moved. My hips and pelvis became so unstable I could no longer use the stairs in our home properly. I became pretty much bed-ridden, and life was hard.
Whilst this was happening my husband’s health also declined, and we both ended up out of work and reliant on a cruel benefit system. Our son was also diagnosed with Autism. And within a couple of years my extended family experienced so much grief and pain (my Nan, my Great Aunt, and my Aunt died, and two of my uncles were diagnosed with cancer). It felt like blow after blow, and I felt incredibly worthless when my own health kept me from being able to support my family in any useful way.
faith in the darkness
However, throughout all of this my faith began to blossom. At a time when I realised I could no longer rely on myself, I had to learn to rely on something greater than myself. I began reading more about Christianity, and thanks to books like Setting Jesus Free, Jesus Through Pagan Eyes, Convictions, and The Case for God, I began to realise that my own relationship with God and Jesus was not only beautiful, it was also okay.
I had long believed that I would never fit in, and my fear of being “found out” for my more liberal (and “out there”) beliefs kept me from joining fully into a faith community. And yet I desperately sought it. I remember clearly feeling God impress upon me that it was time for me to take the next step, as I sang a hymn one Sunday in church. I realised it was time for me to choose to affirm my faith, and that day I spoke to the minister about being baptised.
Since then I have grown deeper and deeper in my faith, both through being in community with others who support me and through my own desire for answers and support during my suffering. One of my favourite parts in the Bible has come to be 2 Corinthians, in which Paul writes about his own suffering:
I cannot even begin to comprehend Paul’s experience of being content with his weakness, of which he experienced far more than I ever will. And yet, this speaks to me so powerfully of the idea that when we are weak we aremade strong, at least where our faith is concerned. It is within having everything stripped away, all the things I thought that mattered most in giving me value, that I realised the true value of my worth as a human. It doesn’t lie in what I do or what I achieve, rather it is in my ability to live a good life, wherever I happen to find myself.
learning to let god in
And yet, despite all of these developments in my faith, I continued to feel distanced from God. It wasn’t so much that I didn’t have faith, for I have always had that in abundance – in my darkest moments I have raged at God, and it’s hard to be angry at something you don’t believe in! Rather, it was that I felt like I was learning to understand God on an intellectual level whilst holding Him at arms’ length.
That’s not to say that the intellectual stuff isn’t important, because it is. Exploring the wider context of any spiritual teaching to discover how it might be relevant to your life is crucial. I’m a huge advocate of Biblical Literacy, as well as Interfaith Dialogue. I find it all fascinating, and something which deepens my faith. But there’s only so much you can read and think about faith before you need to experience it too!
So over the past few weeks I’ve been purposefully asking God to help me take that step towards him, opening my heart to the experienceof Him, so that I could know Him in a deeper way. I’d become so caught up in trying to understand the nature of God that I’d lost sight of that experience I knew and recognised as the Divine. And over the course of a couple of weeks I felt myself being guided to make little changes, all of which left the gates open for God to sneak in.
so *that’s* what god is
This all led to a wonderful experience the other night, when I was laying in bed thanking God for having helped me to see changes I needed to make in my life. I knew that the clarity I was receiving could only be coming from a closer connection to God, and I was feeling gratitude for that. As I thanked Him, I felt this sudden rush of love sweeping towards me at great speed from all directions. And in that moment I knew – this was God.
“So, that’s who you are!” I said, smiling to myself. “How could I have forgotten?” I couldn’t describe the indescribable, and yet I found the words to express the experience. “You’re love, pure and simple. You’re everything. You both male and female, whilst also being neither of those things. You just are.” It all made sense, and though I felt the feeling ebbing away as I got caught up in my attempts to verbally describe the experience, I knew that a fleeting moment was all that I needed. When something is so powerful, you only need a momentary glimpse to keep you going.
I know now that I’ve been worrying too much about whether I experience God or not. The experience was beautiful, and I wish I could bottle it up and share it with everyone I know. But that’s not how it works. It isn’t necessary to “bottle it up”, because it is there for anyone to experience, at any time. God doesn’t stay away from us, it’s we who keep him at what we think is a safe distance, when we are too caught up in thinking we have it all figured out.
embracing my weakness
I also know, without a doubt, that I’m going to repeatedly do that throughout my life. I’m only human, after all, and I will often believe that I know what is best for me. Life experience has taught me very clearly that I often don’t, but I’ll still fall into the trap of believing I’m doing okay on my own. This is especially true when life is going well, but also true when things start to go wrong and I feel like I need to fix it.
So whilst I am a very long way from what Paul describes as being glad in his weakness, I can now see the depth of the truth within his message. For it is when I am brought to my knees, whether through pain or awe at the beauty of this world, that I truly open up to the experience of God.
It’s that time again, when Christmas is over and the last few days of December seem to be filled with both confusion (what day is it, again?), and reflection on another year passing by.
I find that this almost limbo stage of the year is the one where I either find a renewed sense of hope or I am filled with a sense of despair. There doesn’t seem to be an inbetween state for me, and more often than not my despair leads to overly optimistic plans as I determine to have a better year to come.
This is certainly true of where I found myself last year. I chose the word “Create” as my focus for 2018, and came up with 18 ways in which I could create more health, happiness, and success in my work. I was determined to avoid accepting how ill I was and how much I needed to give up in order to survive. I truly believed I could make things better, if only I tried harder. How wrong I was!
Looking Back at 2018
2018 has been plagued with so much stress and fear and guilt and pain. I barely left the house for the first half of it, and although things got a bit easier as the Autumn came along, it’s still been a long, hard slog. And it isn’t over yet. We still have massive financial insecurity. We still have two tribunal hearings to face at some, as yet, unknown point in 2019. And I’m still sick.
That’s not to say 2018 was all bad. We moved to a lovely bungalow in May, and I have been reflecting over the Christmas period on just how grateful I am to be here and not in our old home. Tim chose to be baptised, and we’ve both become more involved with the church through Bible Study and a few events. And Little Man has been coming on in leaps and bounds at school, thanks to better support and a greater understanding of his needs.
2018 has been a good year in many ways, but I cannot help but look back and realise that my hopes and dreams for this year do not reflect that. This time last year I felt desperate to fix things. I didn’t want to be sick (who does?) I didn’t want to be reliant on the state financially (who does?) And I certainly didn’t want to give up all the things that I felt gave me worth (who does?) Looking back at my post from this point last year, I could say 2018 was the biggest failure ever. But, I’m choosing to see it a different way…
Finding a New Perspective
Instead of seeing all I didn’t achieve as a failure, I’m trying to see it as a necessary step on my journey of self-discovery. I’m trying to see all the times I felt like I was knocked back as a swipe at the unnecessary burdens I placed upon myself to fix something that was out of my control. And I’m trying to see my brokenness as part of my healing, because only in my brokenness do I stop trying to rely on myself and turn to something greater than who I am on my own.
Essentially, I’m hoping to find peace. The word came to me as I tried to calm my mind before bed the other week. I had started to wonder what word I could choose to focus on in 2019, and it simply came to me. Peace. I tried variations on the theme, things like rest, reflection, and acceptance, but essentially it all came back down to peace. Pure and simple.
But what do I mean by peace? Do I mean an end to suffering? Well, no, not really. Suffering is, unfortunately, a part of life. So I don’t want to find a peace which is reliant on good times in my life, nor do I want to find a peace that exists despite hard times. No, what I really want to find is a peace that encompasses both, one which reminds me that it is okay to celebrate my joy and express my despair. I want to feel peace wherever I find myself, even when it’s uncomfortable.
The Difference Between Peace and Acquiescence
I want to stop trying to fix everything, and be okay with not being okay. That’s not to say that I will suddenly stop feeling passion for change where I see injustice (I’m never going to have peace with a government which cruelly inflicts pain on the most vulnerable in society, whilst protecting those with the most, for instance). But I hope to stop feeling such intense levels of fear, anger, and guilt on a personal level. I want to stop angrily watching the news unfold, with adrenaline coursing through my body, and instead learn how to channel that energy in other ways (what they may be, I do not know, but I hope to find out).
And therein lies the crux of this whole thing – I want to find peace, even when I don’t know how that will come. This isn’t an active thing, something I can force into being. I’ve tried that, and it doesn’t work. If anything, the more I strive the less peace I feel. The more I try to fix things, to find control in the uncontrollable, the more frantic and anxious and out of control I feel.
And as my body has a tendency to overreact with adrenaline (thanks EDS), this constant cycle of trying to control the uncontrollable has led to an almost permanent heightened state of awareness. The smallest things set off a rush of adrenaline these days, and it’s exhausting!
But whereas I have tried so hard to counteract that with affirmations, meditation, yogic breathing etc over the past few years, I now want to find a place of peace where it’s okay to feel out of control for a while, to ride the waves and trust that there is peace to be found within the madness. Because that’s where I’m at right now, and I can no longer pretend it is only fleeting and I’ll suddenly find a way to snap out of it.
Exploring The Power of Peace
When I was thinking about putting this post together, I was trying to find a quotation which might sum up how I feel. And this verse from Lamentations really struck me:
“I have forgotten what health and peace and happiness are” (Lamentations 3:17 Good News Bible translation).
If there was one verse in the Bible which summed up how I feel, this is it! Okay, maybe not the happiness part, I still have that in abundance. But health and peace? Those two I’ve truly forgotten the feel of. I get glimpses of them from time to time, but they are always fleeting. And I believe they are both intrinsically linked for me, too.
Without peace I cannot truly recover my health. For a long time I thought it was the other way around and that a return to health would bring peace. And it would, of course, in some ways. Better health would mean a return to work, a reduction in financial stress, and an even greater reduction in the guilt felt by the pressure put upon my family by my illness.
But recently I’ve begun to realise I’ve been looking at it the wrong way around. Any peace which comes from better circumstances isn’t truly peace at all, but rather ease at the situation. It may seem like I’m just splitting hairs here, but peace and ease are two very different things. Peace, to me at least, means knowing that at some level things are okay, even when on the surface they are far from it.
Finding The Peace Which Surpasses All Understanding
Which brings me around to faith. I’ll be honest with you and say that whilst my faith has become stronger than ever before over the past couple of years, I still struggle with many aspects of it. It’s almost like the harder life gets, the more I turn to God. But the more I turn to God, the more questions I have.
Not about God’s existence, that has never been an issue for me (in my darkest hours I’ve been the most angry with God – it’s hard to be angry with something you don’t believe in!) No, my questions are more about the nature of God and how I experience that in my everyday life.
I feel like God is just out of touch, supporting me and loving me but in a far less intimate way than I would like. I feel like I’ve been holding God at arms length, not quite willing to open up my heart fully. I’ve been stuck in an intellectual desire to understand God, rather than an emotional desire to know God. And there is a big difference between the two.
So with all of this in mind, I have decided to keep my plans for the year minimal. Instead of setting goals such as reading the Bible and doing yoga every day, I want to wake up each morning and tune in to how I’m feeling and what I need that day to find peace.
I want to open up my heart to the possibility of peace, and see what happens. And I want to do so in the knowledge that whatever happens is okay, even if I feel like I fail. Because the peace I hope to find is the, “peace which surpasses all understanding” (Philippians 4:7).
October 31st marks Halloween or Samhain (or even All Hallow’s Eve), depending upon your personal tradition. Halloween has always intrigued me, since long before I began to explore the history and culture behind it. But the more I have learnt about it, the more it has held a special place in my heart. This is particularly true of the more Pagan roots of Samhain.
Within the Wheel of the Year, Samhain falls at the third and final harvest of the year, and so marks the end of Summer. It is a time of giving thanks for the warmth and light of the Summer months, and preparation for the cold and dark days ahead as Winter draws in. And as today was one of the first days we had to de-ice the windscreen before the school run, I am painfully aware of how long the Winter can be!
(As a side note, Little Man refuses to put on his new Winter coat until December 1st, no matter how cold it gets, because for him it can’t possibly be time for that until the month when Winter officially begins comes around.)
But it’s not just the changes within the physical world that we celebrate at this turning point in the year. For many, Samhain is also about going within and reflecting on the changes in our personal lives. And at a time when the outer world is slowly dying away, we can choose to look at the things that are falling away within our own being. Whether that’s old habits, thought-patterns, or actual physical things like ending a job or moving home, there is always some change we can focus on. Because if there’s one thing we can be certain upon in this life, it’s that change will always happen.
In the past, my reflections at this time of year have often focused on the things which I wanted to let go of, or hopes for a kinder future after months of testing times. And had you asked me about this a couple of months ago, when I was completely bed-ridden by the affects of the Summer heatwave on my health issues, I’d have told you that’s where I thought I’d be right now, desperately hoping for change. But here’s the thing, I’ve spent so much of my life waiting and hoping for things to change within my outer world, that I completely underestimated just how powerful inner change could be.
This Samhain I find myself still in a battle with the DWP, back in debt and desperately trying to manage our finances whilst we’re both too sick to work, and frustrated by so much that is happening in the outer world (don’t get me started on what’s happening in the political world right now). But, I am feeling so much more content than I have done in such a long time, and that means that instead of hoping for change to my circumstances I am able to accept them and live my without the high level of fear and helplessness that have been my constant companions for the past decade.
Because, for the first time ever, I have become aware of harmful patterns of behaviour that have affected so many of my decisions and allowed me to end up in some of the most painful situations. It started with the sudden realisation, as the Summer drew to an end, that I have spent my entire life seeking approval. It seems silly to say that I hadn’t realised this before, but as much as I had known I had issues with “imposter syndrome” and never feeling “good enough”, I hadn’t made that additional step to realising that my behaviour was one of seeking approval from others. And, more importantly, seeking it from people who would never be able to give it.
I realised that there is a true beauty in the way that I view the world, and that my inability to accept the status quo had led me to trying to create change whilst simultaneously trying to “fit in” so that I gained that approval. I was torn between walking my own path and towing the line. And it was so incredibly painful that it’s no wonder I got as sick as I did. Nobody can live like that.
Coming out of that initial realisation were several further lessons. The first was that I had spent a large part of my life playing out certain roles which didn’t feel right. No wonder I’d never managed to stay in a role for more than 18 months, and had changed careers completely on so many occasions. What I wanted to do (i.e. write), felt like something that other people got to do. I honestly believed life had to be hard. Even when I chose to write a book, I didn’t have the confidence to just do it. I sought approval for it. And even though I knew how hard I had worked on it, not to mention the quality of that work, I enabled a situation where this would be questioned.
That same pattern is reflected in all areas of my life. I felt like I had simply “bluffed” my way through university, instead of realising that I am simply very good at languages. My tutors were right when they told me I wasn’t ambitious enough, and was capable of achieving more. But, instead, I felt like a fraud for receiving the results I did! The same goes for my blog. I’ve spent years feeling like I wasn’t “good enough”, because I don’t get the kind of page stats that others do. And yet, as I said before, I know I am a good writer, and that stats aren’t everything.
Basically, the past couple of months of my life have been a massive unfurling of the layers of personas I have tried to fit into throughout my life. It has reached every part of my soul, to the point where so much deconstructing has been happening that I feel like I no longer know who I am. And yet, I’m okay with that. At times it is intensely painful, and I scramble desperately to figure out who I am if I am not all of these things I always thought I was. Especially when I question whether people will like the “real me”. But mostly, it is a joyous unravelling of a tangled web which has held me captive for far too long.
And so, this Samhain, I am celebrating the falling away of these old masks I have worn. I am saying goodbye to the patterns I have allowed to rule my life, thanking them for the lessons they have given me along the way, but grateful to see them finally go. And I am welcoming the darkness of the coming months, as a time of quiet hibernation and reflection, as I allow the spark within to begin to grow in warmth and brightness. Today I am grateful for change, because it means that healing is always within our grasp!
Wow. I can’t believe that we are already in October and so far this year I have only written 10 posts! So much for my plan to write 50 posts this year. Of course, looking back at my plans made last December, I can see that I have “failed” in nearly every single one of them. And yet, from where I’m standing right now, this does not feel like a failure to me as much as a change of perspective.
At the end of last year I still believed that the DWP were going to expect me to work towards getting back to work. And there was a big part of me that knew I would never be able to do that in the more typical way. I was too sick. So I was trying to find a way to make it possible. I was trying to figure out how to make this blog profitable, once and for all.
But the truth is, I am sick. I simply do not have the energy or health to invest in creating the kind of content and promotion and brand/client networking that is required to earn consistent money from self-employment. The only work I have done for anyone other than myself this year has been for the church, and that has been limited to creating one post for the Facebook page per week, promoting the service. And even that has felt impossible some weeks.
No, working isn’t something I am capable of right now. And thankfully the DWP agreed with me on that one (although how they then went on to refuse me disability benefits, I don’t know – surely, if you’re too sick to work, you’re classed as disabled, no?) Anyway, I digress.
This year has been a hard one. I have been more ill than I have ever been (well, aside from my pregnancy from hell, but at least that had an end point!) We’ve been in a major battle with the DWP, we’ve moved home because I could no longer cope with the stairs in our house, and I have spent a large part of the year completely debilitated by pain, nausea, migraines, and dysautonomia. And as such, I’ve had an awful lot of time where all I could do was lay in a darkened room, thinking about life, and trying to figure out who I am when I am not all the things I always thought I was. Including a blogger.
You see, over the years, as I have begun to use my media experience to work with clients, I started to forget that it’s perfectly okay to just blog for the sheer joy of blogging. I forgot that a post didn’t have to take 3 hours, when you calculated the time taken to write, research links, edit for SEO purposes, find a decent stock image, create promotional images for various social media platforms, and then share on said platforms. That’s what you do for a client, or for a business site. It’s not what you do for a hobby blog. Or, at least, it can be but it doesn’t have to be.
A couple of weeks ago I almost gave up blogging. Which is sheer and utter madness, as I’ve been blogging since 2006. It’s as much a part of me as anything else. The problem was, I’d forgotten how to blog just for me. I’d forgotten when it was like to write whatever was on my mind, regardless of whether it had any value to anyone else. I’ve never been very good at writing in a diary or journal, it makes my hands hurt for one thing as I can’t form the letters as quickly as I can type them, and I grip the pen too hard and it messes with my hypermobile joints. But more than that, I actually love the creativity of sitting down and crafting a post that, whilst not necessarily aimed at others could still be read by them. It helps me form a structure to my random thoughts, and that, in turn, helps me figure out things I might never have noticed if I didn’t blog.
Plus, blogging means that I have a permanent collection of thoughts and feelings to look back on. I might misplace a journal once full, but I can’t misplace a blog. My first blog is still lurking away on the good old internet. I looked back at it the other day. And my second one. And it was so wonderful to read my little rambling thoughts. To see how much has changed (and also, how much hasn’t!)
And suddenly I realised that this is what I wanted my blog to be. I wanted it to be a collection of memories. A place where I could just come and share whatever was on my mind. I didn’t want to worry about whether it would make sense to anyone, or whether I needed to include background information for something to make sense. I just wanted to write and share. And so that’s what I’ve decided to do.
I spent most of last week trying to come up with a new tagline which really encompassed this new theme for the blog. And then suddenly, out of the blue, it came to me. Life, as it happens… Because it’s nothing more than that. It’s life, as it happens. It’s not worrying about the future. It’s not worrying about where I fit in. It’s simply life. And life is a flow of new beginnings. Every day is a new beginning. And I want to focus on that. Taking each day as it comes. And writing about whatever happens to take my fancy.
But even though I’d come up with this idea, I still needed one last little push to actually do it. And that came in the form of a wonderful group of people who are all taking part in Get Your Happy Back (GYHB). I won’t write about GYHB in this post, as I want to end this soon. But just know that it is an amazing community that once you join becomes like your family for life. They meet 4 times per year to work on, as it says on the tin, getting your happy back. Because we all get beaten down by life, don’t we? And we all need the opportunity to come together and focus on ourselves regularly, right?
I know I do. In fact, I know I need to work on this a LOT. During the group call on Saturday, my microphone wouldn’t work, so I couldn’t join in to begin with. We all had a laugh about it, but it was very poignant for me. I have issues with expressing myself. You wouldn’t think that, would you, really? I mean, I’m a linguist and a writer – words are what I do. But as my dear friend, Rachel (who is an amazing therapist, by the way), mentioned to me today, there is a big difference between my ability to analyse what I think is going on and what I think people want to hear, and actually expressing what I need to express.
I’m so terrified of what lies beneath all the different personas, that I don’t even really know who I am anymore. And that’s scary. Because if I dig deep and I find out I’m not who I have portrayed myself to be for all these years, will people like the real me? Will I even like the real me? Scary stuff, huh?
Which is why she has challenged me to sit in front of a mirror and tell my story. From the very beginning (birth). In chapters. Because God knows I have a lot of layers to work through! And, to be quite honest with you, this blog post is a little bit of a delaying tactic, as I’m putting off getting started. But that means that this is really important, and so I’m going to be brave and I’m going to do it. I’ve got the house to myself until 5, when I have to go to an appointment to remove my Mirena (more on this at a later date – it’s a big, scary, but empowering change!)
So, changes are afoot. I am going to try to stop worrying about who I am and actually see if I can simply find her underneath all of these layers. I’m going to try and tell myself my story. And I’m going to use this blog to document what I call my “Sacred Healing Journey” over on instagram. Because this is life, as it happens…
I wanted to take a few moments today to reflect on the changes that have been happening in my life over the past few years. I don’t mean the external changes, although there have been plenty of those! I mean the internal changes that have helped me to look at my life from a whole new perspective, leading me to redefine my own sense of self-worth.
It feels almost impossible to know where to begin with this, because the way I view my life has changed in so many ways over the past few years. But I think the most logical place to start is in my teen years, when I first began to develop a warped sense of self-worth
Self-Worth from a High-Achiever’s Perspective
I’ve spent the vast majority of my life believing that my value came from the things I did, rather than simply who I am. As a naturally high-achiever at school, it seemed almost inevitable that this would happen. I got consistently good grades (often the highest in the class), and then I went on to study at one of the UK’s top universities. By the time I graduated, aged 22, my entire life had been about academic achievement. And yet, despite this, I never felt “good enough”.
It doesn’t make much sense, does it? I achieved so much as a teenager and in my early twenties, academically at least. You’d think that this would provide a solid foundation for confidence in my skills and abilities, but in reality the exact opposite was my experience.
I actually really struggled with self-worth a lot whilst at university, and when my dad asked me if I was finally proud of myself on my graduation day I honestly said that I wasn’t. I felt like I had completely bluffed my way through, and was a fraud.
And the thought of moving into employment terrified me, because I couldn’t ever see myself feeling confident enough to cope in the workplace. You see, for me, my self-worth had become so intrinsically linked with my achievements, I felt huge amounts of anxiety and fear over maintaining that high level of accomplishment. Anything less than “the best” felt like failure to me.
the ongoing impact of low self-worth
As a result, I did everything to avoid going into roles that might really challenge me. Don’t get me wrong, I loved my time working in childcare, retail, and student support. I’m a sociable person, and working in roles that involved meeting lots of people was lovely. But I never stayed anywhere long enough to advance up the career ladder. It didn’t matter that my employers could see my potential, giving me greater responsibility than my role actually required, I couldn’t see my worth.
And for most of my 20s I felt like I was just biding my time until I got married and had kids. The one thing I had always been sure about in my life was that I adored children and couldn’t wait to be a mother. I convinced myself that I wasn’t career driven or ambitious, I was just holding down a job until my real role in life would begin. So I was overjoyed when I fell pregnant in 2011, just a few months after our wedding. But my joy was short-lived.
when life throws you a curveball, it’s easy to doubt yourself
As you may know, I suffered from Hyperemesis Gravidarum during my pregnancy. It was, quite honestly, sheer hell. I knew, without a doubt, that I couldn’t possibly face another pregnancy, because my first one almost broke me. But so did the decision never to have another child. I have never been so angry with God than I was during that time.
I remember crying through angry tears, asking why I had been made so maternally driven if I were only ever to be allowed one child. The one thing I had always felt so sure about, that I would devote years of my life to raising a young family, was suddenly snatched from me. And it broke my heart. I absolutely adored being a mother, it was everything I had ever dreamed of. But in my grief and confusion, my lack of self-worth started to seep into this area of my life too.
Any parent will tell you that having a baby is exhausting beyond belief. It feels relentless and scary, to be solely responsible for the welfare of this tiny being. And that’s before you even begin to look at other things that can make it even harder. We all have things we struggle with when we become parents. For me it was the combination of trying to recover from the trauma of my pregnancy whilst: caring for a baby who never slept; trying to deal with terrible issues with oversupply (which felt like my body was letting me down yet again); and supporting a husband who was beginning to suffer from depression. So, it’s not all that surprising that my thought process turned to beating myself up.
the destructive power of doubting yourself
I knew and trusted myself enough to know that I needed help to avoid spiralling out of control into a pit of despair, so I asked my doctor at my 6 week post-natal check for a referral for mental health support. I ended up having 7 months of CBT, and honestly I credit that with keeping my head above the water. But even with that, I still lacked the self-worth to follow my instincts and allow myself time to heal and process what had happened.
My inner chatter began to say things like, “why would you even believe you deserve to have more children when you’re already struggling with one?” and “what gives you the right to stay home and enjoy being with your child, when your husband is struggling so much at work?” I began to question everything, and whilst I look back on that first year with happy memories of sitting for hours just cherishing being home with my boy, I can see how I ended up taking the next steps that I did. Because I didn’t believe I deserved to enjoy being a stay-at-home-mum, nor did I feel like I was doing enough in my life. I felt like I needed to do more.
In a series of what I can now see were misguided, if well-intentioned, choices, I found myself pushed beyond my limit and close to a complete breakdown by the end of 2014. I returned to work when my son was just 15 months old, far sooner than I ever thought I would, and whilst I enjoyed the work immensely I also missed being with him more than I can say. At one point I ended up working two separate part-time jobs, and when one offered full-time hours I took it as it seemed easier than balancing two roles. But it was a role in which I felt incredibly isolated and which, due to the nature of the work tapping into my own personal trauma, almost broke me.
To any outside observer, 2014 should have been a high point in my career. My book was published and hit the top 10 for books in its genre on Amazon. I was interviewed live on national television. And I was working in a role that enabled me to support women all around the country. But I was falling apart inside in ways I had never, ever experienced before. And it was all because I hadn’t trusted myself enough to follow my instincts when they had repeatedly said, “this isn’t what you’re meant to be doing”.
sometimes the best lessons in life are the hardest to learn (because we resist them so much)
Near the end of 2014 I wrote a post called Warrior, because I felt like fighting was what I needed to do. But a few weeks later, in a moment of sheer desperation, I prayed to God in a way I’d never done before. I said, “I’ve tried everything, and I don’t know what I need to do any more. Please, you have to show me the way. It’s your turn now!” And I truly meant it.
I had spent so much time trying to figure out what I was supposed to do with my life, to give my life meaning, if I wasn’t meant to spend this part of my life raising babies. And I had found a purpose, no doubt about that. I had thrown myself wholeheartedly into campaigning for better awareness and care of Hyperemesis Gravidarum, so that one day no woman would have to make the same heart-wrenching choice never to have another baby as I had. But that wasn’t my purpose. That wasn’t what I was here for, and I was finally beginning to accept that.
But I was still very much caught up in the movement in a way that was deeply damaging for me, as well as for those I worked with. And I couldn’t see a way out. But, do you know what? Within moments of passing control over to God, I received the most overwhelming feeling of peace. It just washed right over me, and I heard the word, “Surrender“. And I knew that was what I was being asked to do. I wasn’t being asked to fight for (or against) anything, I simply had to surrender into it. And boy, did I surrender!
answered prayers often take us to places we could never have imagined
Within weeks of my prayer, I had been made redundant; been turned down at three separate interviews for being “over qualified”; and battled with a letting agency after our house move fell through unexpectedly. And yet, I felt nothing but quiet assurance that all would be well. I even began to think about trying to go it alone, finally finding the courage to look at my blog as a business opportunity, a chance to do what I was best at (communicate), rather than simply a hobby.
But in the end, I still didn’t trust myself enough to do that. I still felt as if that was something other people got to do, and it was silly of me to even contemplate the idea. Which is crazy, because it was around this time that one of my blog posts was chosen as one of the Blogger Keynotes at a blogging conference, and I got to read it in front of a room full of bloggers in June 2015. But still, I felt as if I wasn’t “good enough”.
So I eventually ended up in a part-time role, which I loved, but which was physically exhausting. My body had never really recovered from my pregnancy, all the symptoms connected to my EDS had increased, and my fatigue was at an all time high. I began to spend 3 days a week working, and the other 4 feeling like I had the flu. I could barely move, and began to get sick regularly on top. At the time I was gutted. I had thought I had finally said goodbye to the stress that had taken such a toll on my body.
But it was like my body was doing everything it could to make it impossible for me to continue ignoring the fact that I still wasn’t listening to my intuition. Every time I tried to find a purpose, things seemed to get immeasurably harder. I spent most of 2016 seeing multiple specialists to try and figure out what was wrong with me, and in the end I was given a diagnosis of Fibromyalgia.
life will keep sending you the same lesson until you get it
Even with this diagnosis, I still refused to stop and look at what I really needed to learn – self-worth. I left employment after 6 months on sick leave, but set myself up as a freelance VA and web support. I wouldn’t have dared dream of doing that until my sister-in-law asked me to do some work for her and suggested my skill-set was actually really valuable to other businesses. But with enough encouragement from her, along with two coaches I was lucky enough to work with (Pippa from Story of Mum, and Michelle Reeves), I took the plunge and set up Shortman Media.
My aim for the business was to build it up enough so that I could train Tim in the work I did, so that he could start working from home too. We knew his days in regular employment were numbered, and really wanted to avoid the UK Benefits System, which we knew was notoriously bad for supporting people like us. And for a while, it seemed as if this would work. During 2017 I managed to work with 6 different clients, and gained two amazing testimonials that boosted my confidence a bit.
But it wasn’t to last. By the end of 2017 I was working the absolute minimum hours (less than 10 per month), and even then I was struggling. And yet, despite knowing my health was in a rapid decline, I still had the most ridiculously ambitious plans for 2018.
when you “get it”, you really get it
I was still trying to “fix” my life, to find some purpose within the madness, so I didn’t have to face the fact that I needed help. So my body continued to send me messages I could not possibly ignore. I began suffering with migraines that lasted for 2 weeks every single month. I caught every virus going. I became practically housebound, barely leaving my house for the first quarter of 2018. I was literally reliant on others for pretty much everything.
And it was hard. Oh, boy, was it hard. I fought with feelings of guilt, and failure, as it just seemed to be one battle after another. The last 6 months of my life have felt like the darkest pit. And yet, once again, as I began to hit rock bottom I found my faith growing. I clung on to the hope that we would, one day, find our way out of this mess. And I began to realise that the only thing I could really do was focus on looking after myself.
I realised I couldn’t change what was happening to us externally, but I could change how I felt about it internally. I began trying to do things that eased my soul, and chose to trust that the Universe had my back. But it was hard. For instance, there were 3 weeks in which we were unable to bid on any council properties. This was then followed by several weeks when the only option were flats, which I knew without a doubt would be a terrible move for us.
There was one week when I really began to doubt myself and wonder if we should bid on a flat, just to get out of the house that had become almost prison-like to me. But I held faith, and lo and behold the very next week our dream bungalow became available. And even though it felt too risky to even dream we might get it, I just knew it was ours and felt like I was simply waiting for confirmation of what I already knew. And a week later, it really was ours!
letting go of the ego to find a true sense of self-worth
Of course, moving when you’re as ill as we are is far from easy. I had to swallow my pride over and over again, asking publicly for help with everything from decorating to doing tip runs. But do you know what I learned from this? I learned that people were more than happy to help, because they valued me for who I am, rather than what I could do. And it was a real revelation!
The more I asked, the more I received, and I began to see how truly blessed I am. In the moments when I felt like the biggest failure, I reached out for help instead of trying to hide my shame, and received so much support it was incredible. And it reminded me that, all along, I’ve been supported, I just didn’t want to believe it. Because I didn’t feel worthy. I felt like I hadn’t earned it.
But all that was changing. When I felt like I truly had nothing left to lose, I realised I had gained so much more than I could ever have imagined. And slowly, but surely, I began to redefine self-worth. I began to truly understand what it meant to honour yourself as worthy, just as you are. To “stop playing small” and fully embrace the beauty of who you are. I began to accept what I had written a few years ago, about us all being made to shine. And I began to trust myself again (or maybe, even, for the first time ever!)
when you trust yourself, you begin to find your way
This all brings me to the past few weeks, in which a huge amount of inner healing work has taken place. It all started with Rebecca Campbell’s new Work Your Light Oracle Deck, which I kept seeing on instagram.
I have several oracle decks already, and used to use them quite a lot. But in recent years I just haven’t felt connected to them at all. So it surprised me to be so attracted to this new deck, especially as the artwork was so different to what I would usually be drawn towards. After seeing it multiple times, and feeling a gut reaction to it every single time, I decided to trust my instinct and order it. And, wow, was that the best decision I have made in a very long time!
The deck itself is so incredibly beautiful, and the emphasis on the idea that You Are The Oracle really spoke to me. You can read about my first experience with the deck here, which in and of itself is incredible. I’d never shared anything quite so “New Age-y” so publicly before, and it felt really scary to open up that part of my life and express how much it means to me, especially as someone who also describes herself as a Progressive Christian.
Don’t get me wrong, I’ve touched on this in the past, but I’ve never authentically shared how it fits into my own personal life, nor how important it is to me. And that felt like a terrifying thing to do. But it also felt so right. As I wrote in my instagram post, “I’m finding the courage to share all the aspects of my faith and spirituality. Because I do connect with both “New Age Spirituality” and Progressive Christianity. I truly believe they complement each other and do not have to be an “either, or” option when it comes to faith. This is my path, and I don’t want to hide it any more.”
finding the worth in your own, unique story
Thankfully, several people liked and commented on my post, giving me the added reassurance that it was safe to share my story in this way. And it opened up so many doors for me. Because, for the first time ever, I began to see the worth in my story and the power in sharing it openly.
I’ve been blogging since 2006, and right from the beginning I wanted to write about faith and spirituality and how beautiful it can be when it is truly inclusive. But as a 22 year old, I felt like I had no right to be writing about such things – what did I know about life?
So I began writing about things that seemed “blog-worthy”, based on the types of topics other bloggers were writing about. Things like homemaking, crafts, and parenting. But the truth is, that wasn’t what I needed to write about. I needed to write about faith. And I needed to write about it in the context of life itself.
By that, I mean, I didn’t need to have it all figured out, I simply needed to write authentically as life happened. Because there is power in being open and raw and vulnerable, especially in a world that is so hell-bent on aiming for perfection. My beauty lies in the unfiltered parts of my life. And my worth is based on who I am, not who the world wants me to be.
changing “only” to “Amazing”
And so, I began to simply write what was on my mind, rather than worrying about whether it was share-worthy. And I began to trust that it would find those who needed to read it. Because a few weeks ago, in what I can only describe as an inspired moment of clarity, I suddenly realised I had been looking at my blogging journey all wrong.
For many years, I’ve felt like a failure for blogging for so many years and still only having a fraction of the reach that other bloggers have. I felt bad that I get “only” 2,000 visits to my blog per month, that “only” 147 people follow me on Facebook, and that “only” 660 people follow me on instagram. But in that moment of clarity, I changed my “only” to “amazing”.
I realised that it is truly amazing that my blog is viewed 2,000 times per month, despite me doing pretty much no social media promotion whatsoever. And it is beyond amazing that people not only follow me on Facebook and instagram, but they also encourage and connect with me whenever I post, despite my posts being irregular and likely to be lost in such a fast-paced environment.
just share your story, that’s all that matters
I couldn’t possibly reach as many as I do people without my blog or social media. So it is a true blessing to be able to share my story in this way. And I’m beginning to see the true value in sharing it, no matter how many people read it.
Funnily enough, the Universe was determined to help me remember this, as I suddenly came across a video series by Gabby Bernstein, in which she encourages you to simply get out there and share your story. In her first video she even mentions someone who arranged a public talk and only one person turned up. And yet, after her talk that one person thanked her for such an incredible experience. If we simply share our story, the rest falls into place.
And so that’s what I’m going to do. I’m going to share my story. I’m not going to worry about how long this post is, or whether it’s “of value” to anyone else. It’s of huge value to me, and reminds me that I’ve been sharing my story all along. It’s just, now I’m doing so with intention. Now I’m sharing it because I understand that it has value simply because it is true and authentic. And because of that, it is also healing.
How do you know your worth? What is it, about yourself, that you feel makes you worthy? Is it the things you say or do? Maybe it’s your achievements and successes? What about your career? Or your relationships to others? What do you hold on to tightly, whenever you feel doubt begin to creep in?
For me, it is my goals and achievements. It is the things that I have done which I feel give me worth. Which is a problem for me right now, because at the moment I am too sick to do anything. I am barely getting by with the day-to-day tasks, doing the odd bit of work here and there and just about surviving, but certainly not achieving any real goals. And that is terrifying, because without those who am I?
a change in perception
You may remember that I shared 18 things I wanted to achieve this year recently. When I shared them with a close friend, I was reminded that these are ambitious goals for someone much healthier than I am right now. And it made me realise that I am struggling so hard with redefining my worth now that I am so sick…
And it’s not just the achievements that bother me, it’s the interactions with others and my perceived role in relationships that bothers me too. How can I be a good mother, daughter, sister, and friend if I’m too sick to do anything beyond the odd message here and there and a call out for help when I need it. What am I bringing to those relationships right now? Where is my worth?
Have you ever felt like that? Have you ever felt completely worthless, like you simply cannot do or be enough, just as you are? Have you ever carried feelings of guilt and fear over where you are and who you are becoming? Do you recognise what I’m trying to say?
If so, I hope that you’ll find the video below helpful. It is a poem I wrote on one of my darkest days recently, which also turned out to be one of the biggest turning points of my life so far. It starts with a feeling of helplessness, and ends with a message of love, which is exactly the journey I went on whilst writing it.
How did the poem make you feel? Can you relate to it? Did your mind fight the message at the end, not wanting you to believe how worthy you truly are just as you are? I’ve certainly been there and experienced that, which is why I love the powerful healing that I experience when I create something like this.
the healing power of creativity
For me, letting the creative juices flow enables me to get out of my own head and let the wisdom of the Universe speak through me. It inspires me, gives me hope, and reminds me that there is so much worth in the most simple of actions. By taking a moment to be quiet, allowing myself to be inspired, and then letting the poem work its way out into the world, I facilitated a shift in my whole perception.
Of course, as soon as I had done it I began to doubt myself again. I worried that the poem would make no sense to anyone else. Not that it would matter that much if it only made sense to me… except my experience whilst writing has always been that this is where my true worth lies, this is what I can bring to the world. So I wanted it to mean something to others.
So I swallowed my fears and shared it with a few close friends. And the response was more than I could ever have hoped for. Seeing others respond to my words not only increased my confidence in my writing, but also reminded me that we all hold these fears within us. I’m not alone in feeling this way, and so sharing my heart with you all is just as valuable as anything else.
I wanted to share it with you straight away, of course. But life had different plans, and I’ve been too sick to do it until now. But that’s okay because I’m learning patience as well as everything else. My worth is not in producing content constantly, rather it is in allowing an idea to flow and grow until it is ready to be shared, no matter how long that takes. There truly is worth in every step… even when that step might be resting in bed!
You’ve probably noticed it’s been rather quiet here at The Patch lately, and there’s a reason for that. I’ve been really struggling health-wise, and in an attempt to keep going through everything that has been going on, I decided to focus on other areas such as Shortman Media and Spirit Kid Network. However I really, really missed writing here and so I am finally making the time and space to come back to this wonderful little blog of mine.
Last week we headed down to Glastonbury (my favourite place on earth) for an impromptu holiday, and for the first time in so very long, I knew what I needed to let go of in order to begin creating the life I want. The things I want have changed so much over the past few years, and it all started when I went from wanting to have a big family to trying to force my grief over my pregnancy (and loss of more children) into something positive. I poured all I had out into campaigning for others and trying to make the most of a situation I found so incredibly challenging, and in doing so I failed to recognise what I needed most – to embrace all the parts of who I am.
Years ago I wrote constantly. I’d scribble things on napkins in cafes as inspiration hit, I’d spend hours reading and writing about the things I found most exciting or intriguing, and my whole life revolved around communicating (I was a language student, after all). And for a while there I completely lost that side of myself. I got caught up in trying to “be a good blogger”, following advice from others rather than simply writing from the heart. And I did this because I felt I had lost who I was, and so I couldn’t identify myself without turning to other people’s interpretations of what it meant to write a blog.
And in my life as a whole the same thing happened, as I tried to figure out what it meant to be a mother, a successful employee (and then freelancer), a wife, a friend… I didn’t allow myself to be sick, even when I was sick, because I didn’t think that was what I was meant to be. I tried to keep up with people far healthier than I am, hoping to somehow redeem myself and my worth through being something other than who I am. And I never allowed myself to feel the grief and the pain and the anger over where I found myself, because I didn’t want to accept them as a part of who I am.
And all of that led to an intense loss of self, a situation where I forgot that as humans we are beautiful, multi-faceted beings, who sometimes fall so very low and need to stay in that darkness for a while before climbing back out into the light. By trying to lighten my situation constantly, I ignored a whole part of my soul, and ended up splitting myself in so many different directions I had no idea where my centre lay anymore. And the more I did this, the harder I fought to keep up the charade.
My time in Glastonbury changed that, however. I had some wonderful Soul Healing at the Goddess House, where a wonderful lady called Mandi Thorne explained how she could feel my resistance to let go. I have been clinging on to a false sense of control for so long that I am terrified of letting go and allowing all the emotions to bubble up to the surface. They scare me. And that needs to change.
So I’m taking tiny steps towards embracing the whole of who I am, rather than trying to be who I think I should be. And a large part of this involves closing down my other site (Spirit Kid Network) and bringing the spiritual resources I was trying to create over there to The Family Patch. When I set up SKN I did so because I didn’t think the resources fit here. And that was a mistake, because they are a huge part of who I am.
You only have to look at my posts over the past year to see I have written far more about my faith here at The Family Patch than I ever did over on my spiritual site. And that is because I pigeon-holed that site too, making myself believe that if it was about me and not a resource for kids it didn’t really belong there. I ended up losing my voice completely by splitting the parts of who I am so strictly.
So over the next couple of weeks I’m going to be rebranding The Family Patch to reflect this new integration of all that I am. No longer will I worry about whether it’s a craft blog or a health blog or a spiritual blog or whatever else I think it should be in order to fit in. It is a beautiful, complex, and disorganised place where I can share my heart as I journey towards better health and healing through honouring all that I am. And I am so delighted to be moving in this direction.