Today my herbalist and I talked about the effects of chronic stress and how the body can get stuck in fight or flight mode.
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’t normal. 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.
I was unsure what to call this post, because there are so many things that are heavy on my heart right now. But I think the title I’ve chosen sums it up rather well. For such a long time I have been desperately fighting the uncertainty over my future, the grief I feel over things beyond my grasp, and the vulnerability that comes with accepting that I am sick and that I can no longer give until I first learn to receive. Resisting all of that has taken its toll, and it’s time I learned to embrace it instead.
I hasten to add that this isn’t a new concept to me – I’ve known I’ve needed to do this for years, but knowing something and actually accepting it are two very different things. Even as my health has deteriorated over the past few years, I have refused to acknowledge just how ill I have become, because doing so felt like giving up. Even up until the very beginning of this year, I was determined to make it all work somehow – I’d go freelance and work from home, I’d schedule in time each day to focus on my well-being, I’d cook healthy meals from scratch, and I’d find a way to do all of this and continue to run two blogs, be active in social media groups, and get more involved in my local community too.
How hard could it really be? I thought. After all, I wasn’t quite as sick as I had been when first signed off work last summer. Several months of trying to rest as much as possible had made a difference, but I needed to get going again to help make ends meet financially, and I didn’t want to be held back by my illness anyway. Unfortunately, with all the determination in the world, there are some things you just cannot change. For me, this is my health. I’m not talking about small changes like eating healthier and getting exercise – of course those make a difference. What I mean is that, if you are chronically ill, sometimes you just have to accept your limitations and find a way to work within them. But that it something I am terrible at!
The past 3 months have practically broken me: I’ve been working with several clients on some pretty big projects; I’ve seen my family struggle with my Nan’s final weeks on this earth; I’ve had multiple conversations with Little Man’s teachers as he has been struggling to settle into the school environment; and I have tried to keep my home running as smoothly as possible throughout all this change, all whilst suffering from multiple viruses on top of my general ill health. And yet despite all of that happening, I still continued to try and do more…
When I look at it like this, I realise how unbalanced my thinking really is. And I understand why I live with this constant knot of anxiety at the pit of my stomach, never knowing when a full-blown panic attack may occur. Because I haven’t given myself time to breathe, time to sit in the uncertainty of my life and grieve for all that I had once wished for but which can no longer be. And I certainly haven’t allowed myself to be vulnerable, because that fills me with absolute dread – what happens if I do that and it all falls apart?
So, of course, life enabled me to experience that which I feared the most, didn’t it? This week I was faced with “saying no and letting go” to so many things, things that I not only felt I ought to do but which I really wanted to do too. I had filled my week with fun activities – a trip to the Cathedral with a friend, and singing in the choir for the Church Panto. But a stomach bug stopped me in my tracks and made me realise I simply cannot do it anymore, I cannot continue to pretend I am coping when really I’m so close to breaking.
I toddled off to the Cathedral with my friend, feeling worse for wear but determined to make it through the week, and ended up spending half of the time in the toilets! I then sat quietly in a little chapel, knowing that I had to cancel my plans but so terrified of letting people down. Thankfully my friend was a wonderful comfort that day, encouraging me to allow myself to be vulnerable for once and not worry so much about other people, and I cancelled attending Bible Study that afternoon and Panto Rehearsal/Performances for the rest of the week. I cried so much when doing it, partly because I hated to let others down, but mostly because of what this signified. In cancelling these plans I was truly beginning to acknowledge how ill I truly am right now.
Which led me to thinking about all the areas in my life that drain the energy I simply do not have to spare. Many of them are things I love and am so passionate about, and it breaks my heart completely to have to put them aside right now. But the alternative is continuing until I break, and having been there just a year ago (and again a couple of years before that) I am desperate not to return to that place any more. This time I want to truly embrace the uncertainty of it all, to grieve for all the things I wish were different, and to allow myself to be vulnerable in this space. No more “putting on a brave face” and pretending all is well when it’s not. Wow, that is hard for me to write… and even harder to live!
Which brings me to the point of this blog post, really. I’ve had a good, long (and extremely hard) look at all the things that I have going on in my life and decided that I have to cut back on so much in order to give myself the time, space, and energy to truly begin this healing work. And here’s what I’ve decided:
1. I shall make time every single day to seek out the love of God which I know is helping me through all of this. This will take various forms – sometimes it may be reading a book, sometimes it may be walking in the park, and sometimes it may be sitting in silence. Whatever form it takes, I want it to become a prominent part of my day, helping me to truly embrace the uncertainty of it all, trusting that I don’t have to have it all figured out!
2. Leading on from this, I shall use The Family Patch as my place to simply write what feels important to me, rather than trying to produce “useful” content. And right now that is likely to be a lot about faith. I know that this isn’t everyone’s cup of tea, so please do feel free to unsubscribe or mute updates from me if you don’t want to read this kind of content. But for those of you who are interested, please do share with me your own thoughts and experiences in the comments, as I’d love to hear from you.
3. Even though it is faith-based, I am taking a break from Spirit Kid Network. I simply cannot devote the time needed right now to build up the kind of content it deserves. There is still content to be found over there from last year, plus my free chakra guide for kids, so I’m not shutting it down completely. I simply need to release the pressure of producing new content on a regular basis on both of my blogs.
4. I am also going to limit my use of social media, particularly Facebook Groups. To be fair I haven’t been using Twitter, Instagram, or Pinterest that much lately anyway. But a large chunk of my time gets caught up in Facebook Groups. Most of these are relevant to the work I do at Shortman Media, so it feels a bit risky to step back from some of them, but I really do need to limit my time spent helping others – every short answer I give soon adds up over the length of a week.
5. That being said, I do want to spend a bit more time in The Faith Space, which is a Facebook Group I set up for those of us who wanted to discuss faith in an open and religiously diverse way. I’m not promising anything in terms of how much I’ll actually do on there, but if you’d like to join us please do request to join the group over on Facebook.
All of this means that the limited time and energy I have outside of what I have to do (freelance work, housework, family life etc) is less likely to be eaten up by multiple different things and more likely to contribute to my overall well-being, by focusing on what is most important to me right now. I am a giver by nature – I want to be there for everyone, encouraging and supporting them, no matter what. But that takes a lot of time and effort, which I simply do not have right now.
So, that’s where I am right now – embracing uncertainty (and trusting in God’s plan for me), grief for all the things I have to let go of right now (including all those big, exciting plans I have), and vulnerability (so that others can offer love and support where I cannot). It’s an emotional place to be, and I have cried more over the past few days than I have in months, maybe even years. But that’s all part of the journey, isn’t it?
Today is the Midwinter Solstice, the shortest day of the year and the turning point at which we start the slow journey back towards the long days of summer. And as has become my custom over the past few years, I am taking some time out today to reflect on all that has happened over the past 12 months and what I hope to achieve in the coming year.
I find the Midwinter Solstice really symbolic in helping me remember that nothing ever lasts forever, and brighter days are always ahead. The past few years have felt like a never-ending battle, with ever more challenging situations developing despite my determination to keep going, and keep growing. Over time I have found my strength and resilience waning, both physically and emotionally, to the point where it feels like things will never change. And yet I only have to look at nature to realise that this isn’t so. Right now the trees are bare and the skies are grey, and yet I trust that Spring will come again, it always does.
When I apply this same reasoning to my own life I begin to see that even the most traumatic times in my life have come to an end at some point – my dark nights of the soul never last forever, even when I fear they might. So, when I look back on my Solstice Reflections from the past two years, I could easily conclude that yet another year has gone by and I’m still sick, still poor, still suffering. But the reality is not quite that simple.
My 2014 Solstice Reflections came during a truly traumatic time for me, when I really couldn’t see any way out of the situation I had found myself in. And yet I did, and the next year started off really well. Unfortunately by the time I reached December my Solstice Musings for 2015 seemed to find me back at square one, with another Christmas spent struggling physically.
However I was in a better place emotionally and spiritually than I had been just 12 months before, and so I was able to see that instead of going in a circle I was actually following a spiral dance, coming around to a similar spot but always just a little bit further on. The same can be said for this year too, and I am so very grateful to this blog for giving me a very tangible record of where I’ve been so that I can reflect just on how far I have come.
You see, my focus word for 2016 was “Healing”. I was determined to make sure I did everything I could to help my body heal after several unbelievably stressful years that had taken a real toll on my physical health. I started with healthier eating, regular yoga sessions, and a desire to look after my emotional health by limiting the pressures I put upon myself (which included over 3 months away from Facebook and 5 months away from this blog!) But despite all my best efforts, I ended up more physically sick than I have ever been in my life, which felt like the furthest thing away from healing as possible!
And yet, despite being so physically ill that I couldn’t even get out of bed or think straight at times, I began to realise that I have still been doing a huge amount of healing work. No longer could I ignore my body’s cries for help, I had no choice but to stop and listen. Even more importantly, I could no longer try to pretend that all was well and I could fix things by doing the same old stuff I’d always done. I had to learn to trust in something greater than myself, and accept that there was no quick fix to all of this.
Healing takes time, especially when you’ve put everyone and everything before yourself at the expense of your own well-being for far too long. You have to learn to live in an entirely different way, to accept a slower pace of life, and trust that your world will not fall apart just because you say no to things (even things you’d love to do).
When I look back on all the progress I’ve made this year in terms of self-care and self-love, I realise that I have done far more healing than I ever expected. I learnt that it’s okay to not be okay sometimes, that affirmations set us up with the perfect mindset from which to heal, and that self-love is something I struggle with a lot.
I’ve started to change the way I care for myself, by connecting with other chronically-ill people who understand the realities of spoonie life. And I’ve been learning to honour my limits (even when that meant missing out on something I truly love), and investing instead in things that will truly help me where I am right now. This year I’ve been blessed to have one-to-one sessions with both Pippa from Story of Mum and Michelle Reeves, who have each taught me so much about myself and my ability to heal and grow.
Which brings me to where I am today, on the longest night of the year. Once again I am struck by the deeply symbolic nature of the Midwinter Solstice and its celebration of the return of the light through the darkness. This year has been a dark one in many ways for me, and I am ending 2016 without a firm diagnosis for why I have been so ill, despite countless appointments with numerous specialists throughout the year. But within that darkness there has been so much light for me to find, and I truly do feel as if I am firmly on a healing path, making progress step by step on this glorious spiral dance we call life.
I’ll be back again before the end of the year to share with you the word I have chosen for 2017, I’m so excited about this one! But for now I want to simply wish you all a very Merry Solstice and a Happy Christmas too.
Linking up with #ShareYourYear hosted by Belle du Brighton, as this post sums up the past year for me very nicely. Pop over to the linky to find out what other bloggers have been up to this year – it’s a great way to get a snapshot of bloggers’ highlights (and find new blogs to follow!)
It’s no secret around here that TJ and I have (more than) our fair share of health troubles. Between TJ’s Small Fibre Neuropathy and my combination of Endometriosis, Hypermobility and IBS, life can be challenging to say the least.
It would be hard enough if just one of us were struggling, but when we’re both sick it makes it very difficult to support each other through our darker days. And yet, support each other we do… and we do it well!
Some of this comes from the fact that we both know exactly what it is like to feel exhausted the entire time, to have our energy zapped by constant pain (and other symptoms), and to feel that life is entirely unfair at times, regardless of whether this is just our perception or we really are facing discrimination due to our illness.
But the rest of it simply comes from the fact that we love and care about each other, leading us to find ways through the tough times even when it feels completely hopeless.
The past few weeks have been particularly troubling for us, as TJ has had to come off yet another medication due to side effects that are simply unacceptable long-term. He is doing much better now he is off the medication, but it does mean we’re in even more uncertain waters in regards to management of his pain and the extra health issues the medication caused.
And amid all of this, my health has taken a drastic turn for the worse, with more bad days than good (I’m talking 3 day migraines, crippling nausea, indescribable exhaustion). Simply surviving has become a challenge, and at times like this it is more important than ever that TJ and I come together to support each other, rather than falling prey to the misery that chronic illness can bring.
But what does this actually mean? What is it that we do that makes such a difference to how we survive these challenges and even find joy in the midst of them? I’ve been thinking about this a lot lately and here’s what I’ve realised…
We talk. A lot. It sounds simple, doesn’t it, but it really does make all the difference. It doesn’t matter what we talk about, the most mundane conversations can lead to some really interesting insights into what is going on inside the other’s mind. I’m very open and honest and blurt out what I’m thinking and how I’m feeling without any prompting most of the time, but TJ finds it more difficult to express these things. When we make time for each other in this way, it all becomes easier.
I’ll admit that I find it rather annoying when he hassles me to get ready for bed as he’s tired, only to begin telling me all sorts of things once the light is turned out and I’m about to drift off to sleep, but those talks we have before sleep are often some of the most telling! And that’s another way that we support each other – we give each other time. No matter how tired we may be, how inconvenient the timing is, or how many jobs need doing, we make that time for the other person when it’s needed.
Heightened emotions mean that outbursts can come at the most inopportune and unexpected moments, especially if we’ve been holding them in all day to get through everything else we needed to. Knowing that the other person offers safety in which we can let go and show how fragile we’re really feeling makes a massive difference. We both understand what it’s like to lose it, and so we give each other grace for those moments when we’re acting irrationally or taking it out on the other person, when they are the person who least deserves our wrath.
We make compromises. Big ones. When you’re chronically ill, you have to learn to know and accept your own limitations. It means that so many of the things you always thought you could have are no longer attainable without having a serious impact on your health and well-being. If you know anyone with a chronic illness, chances are you’ve heard of The Spoon Theory. TJ and I are well versed in this, and we both know that right now in our lives we are over extending ourselves massively simply to get by day to day… we have to work to make ends meet, we have to find the energy to put food on the table, and we need to provide a safe and happy environment for Little Man. By the end of all that we are usually beat… but we still want more.
This is where we find that it is important to know which compromises we can live with and which we can’t. We can live with a certain amount of pain, but we cannot push ourselves so far beyond our limits that we become unable to function. That financial security we crave is nowhere near as important as being well enough to enjoy what we do have. The higher paid job is not worth the added stress that impacts on our lives. And the larger family we’d have loved is not possible when we are both so ill. We get that. All of it. So we focus on what is most important to us – family, health, and happiness.
We work together to find new ways of surviving this crazy life of ours – we research our options and make changes accordingly. When I tell TJ that I want to try changing my diet to check for yet another food trigger, he does not question it but supports my decision. And when he tells me he wants to try exercising in a different way, I say “let’s do it”. When you’re chronically ill, you’ll try anything to find a better balance in your life and avoid triggers, even when you know that your latest idea may not work at all. Having someone support you in this rather than dismissing it from the start can make all the difference.
And finally, when all else fails, we care for each other. When, despite our best efforts, we are struck down with such severe symptoms that we simply cannot do more than sit in bed and cry, we allow this to happen. We allow each other to scream, shout, and cry about the injustice of it all, how we’re feeling utterly defeated, and that things will never, ever get any better. We’ve learnt, through the years, that sometimes there isn’t an answer, that sometimes we cannot fix it for the other person, and that despite the heartache that brings us both, we have to accept it.
And so we cry with them, allowing the grief to surface, safe in the knowledge that together we can get through it. None of this takes away the pain, but it does make it far easier to bear. It’s a dance that we have learnt together and will continue to follow and adjust throughout our lives. Living with chronic illness is tough, supporting someone with a chronic illness even tougher at times, but together you can get through it.
Tell me, how do you support your loved ones when ill? And what support do you find helpful when you’re sick?
Following on from my post "It's End-O, not 'The End'" last week, I thought I would explain to you why I chose that particular name…
Endometriosis is a chronic condition, which means that it affects the sufferer's life in many different ways, over a prolonged period of time. When a woman first finds out she has Endometriosis it is likely that the condition has already affected her life through either pain or infertility and will have several repercussions for her future.
My own personal experience with Endo started when I was 13 and began having periods. Right from the word go they were painful enough to put me in bed and irregular enough that all my friends knew to come to me if they were caught unprepared because I constantly carried a bag full of sanitary towels and painkillers, thanks to such irregularity. At times I would feel sick for one week, have my period the next, feel better for one week, then feel sick again and have another period the following week – an exhausting, and confusing pattern for anyone, let alone a teenager just coming to terms with the fact that her body is changing.
I was 21 before I got my diagnosis and only then because I pushed, and pushed, and pushed for surgery to explain what was going on. I had, in the time since starting my periods, already tried three different contraceptive pills, numerous prescription painkillers and tried to "go it alone" as well.
After my first laparoscopy and diagnosis I was given a Mirena coil, which prevents the womb lining from growing. For three months I had severely heavy periods and struggled to deal with the onset of IBS at a time when I had to focus on my education (I was in my final year at university). But, thankfully after those three months my periods stopped and I could finally start to live like a normal person – or so I thought…
Two years on, I started having pain and unexplained bleeding and another battle ensued to get the doctors to pay attention. I even paid to go privately to get my doctors to take me seriously. Despite having had a previous diagnosis, they seemed reluctant to believe anything was wrong as I still had no real bleeding… how wrong they were!
My second laparoscopy enabled the doctors to see I had stage III Endometriosis and among the adhesions caused by this was the most painful attachment of my uterus to my rectum. If the doctors weren't convinced anything was wrong with me, how was I to show the world my pain?
You see, like so many chronic conditions, Endometriosis is an invisible one. From the outside a woman can look perfectly fine, yet inside she may be falling apart. Endometriosis isn't just about pain and infertility, although these two are awful consequences some sufferers have to deal with. It can also cause depression, fatigue, relationship problems and sometimes embarrassment. So, it is easy to become a victim to it…
And that is why I chose to call my own fight against it "It's End-O, not 'The End'"… I refuse to let my Endo be the cause of the loss of my dreams, ambitions and joy of life. I won't lie to you – there have been times when I just wanted to give up, and times that giving up were my only option (such as giving up full-time work), but that doesn't mean I give in. My dreams are too important to me to let the condition win, and spreading awareness for those who do not feel able and facing those who do not want to discuss such a "taboo" subject as periods is too big a mission to step away from when I know I have the ability to do so in a good way (after all, the written word is a major love of mine!)
This doesn't mean I do not understand how easy it is to become a "victim" and nor does it mean I will not stand by those who are unable to fight, for I cannot even begin to comprehend just how painful it must be to lose pregnancy after pregnancy to the condition or become so affected by the condition that your relationship breaks down… it just means that I choose to fight for all those who cannot, to support them when they are down, and be as honest and truthful about my own experiences to help spread awareness to the world, whilst showing that it doesn't have to be "The End" of your dreams…