I think it’s safe to say that March has brought with it a lot of change! What a month it has been – how are you coping with it all? Do let me know in the comments, I love to hear from you. I’ve written a couple of posts this month which you may find helpful at this time of isolation, when life feels very limited and disconnected in many ways.
The first is Tips and Resources for Isolation, which I wrote from my experience of being stuck at home for the past couple of years with my ill health. I hope that the resources I’ve shared within that post may provide some support to you as you begin to adapt to your new “normal”. One thing I’ve learned over the past couple of years is that it’s perfectly natural and okay to feel frustrated and unsettled when life throws you such a massive curveball, so be kind to yourselves during this period.
The second post I want to share with you is my review of Tamora Pierce’s books, as they are a great way to lose yourself for hours, days, and weeks at a time when you need to get away from the reality of the world for a little bit. Please note, however, that the giveaway to win a series is now over.
COVID-19, Social Distancing, and Lockdown
I’m not even sure where to begin with this. We end this month in a completely different place to where we were just a few short weeks ago. The schools are now closed, and families like ours are learning how to homeschool their children for an indefinite amount of time. The churches are closed, meaning a loss of community and a need to discover new ways of connecting with those in need. Supermarkets are struggling to meet demand, developing new strategies all the time to provide for those most vulnerable, and highlighting just how fragile the “just-in-time” supply chains we have really are.
The NHS is preparing for potential overwhelm, whilst working without adequate equipment and resources. And the government’s stance has changed significantly throughout the month, moving from a highly criticised plan to control who gets the virus to build up “herd immunity”, to one of lockdown where all but the most essential staff have been asked to stay at home.
Needless to say, emotions are running high, and everybody is feeling the effects of this. Personally I’m coping reasonably well with everything. I feel so much better in myself now that my vertigo has finally eased, that in comparison the current situation feels less overwhelming. That’s not to say I’m not worried about COVID-19 and the massive impact it is going to have on so many lives, but I’m not battling severe levels of anxiety about it (which is completely different to how I felt earlier in the month, and which I’ll talk about further down this post).
I’m even enjoying having Little Man at home with us. Now he is home with us there is less chance of us catching any of the many viruses doing the rounds, which is a relief to me after already having had the flu and then 7-8 weeks of severe vertigo from the labyrinthitis. The last thing we want is to fall ill again. I know many people within the chronic illness community for whom this is a massively terrifying time, because they are in the at-risk categories or are concerned about a relapse in their symptoms as a result of catching it. I’m not saying this isn’t a scary time, just that I’m dealing with it much better than I would have expected.
The same can’t be said for Tim, who is really struggling with the overwhelming levels of fear feeding into his depression. The changes to our lives, such as not being able to go to church and having Little Man home all day every day (providing no time for being alone and using his usual coping strategies to deal with his depression) are all having a cumulative effect. So we feel for you if you’re also struggling right now.
My Life’s Purpose?
One of the most interesting things to come out of this month is how busy I have been. Far busier than I have been in a good couple of years now. You see, I run the Facebook Page and website for our church, and with the churches all closing I have significantly increased how much work I’m doing on both of those platforms. Right now making the most of online communities is crucial for keeping people connected during this time of intense isolation. And having been a blogger since 2006 and working in social media support for a couple of years before becoming too ill to continue working, I am well prepared to help with this.
In fact, I’ve been thinking for a while now that if and when I recover enough to actually work again (here’s hoping), this is the direction I should go in – supporting churches in getting to grips with and using online media within their ministry. I feel it’s a shame that I’ve not been well enough to do this already, because such resources are vital right now. But I’m also aware that moving forwards there will (hopefully) be more interest in exploring online media by churches that may have been hesitant before. Because once the lockdown measures lift, there will still be lots of people who cannot connect with the church community in the usual ways, due to ill health, disability, age, or lack of transport. And we must not forget those people when we are back in our church buildings once more.
It feels as if the past few years of my life have been a preparation of sorts for this very thing. I have experienced what it feels like to be stuck at home, unable to connect with others in the usual ways. I have had to learn how to overcome feelings of isolation, and have discovered lots of resources that help me in my faith journey. And this goes beyond church too. Because let’s be fair, lots of people simply do not feel like they “fit” in the church (I know that feeling as well!) And so I feel as if another part of my “life’s work” is to help others explore and develop their own connection to the Divine, both through this blog and in places such as The Faith Space.
It seems both strange and also completely natural to me that I have found this kind of clarity during such challenging times. Many times in my life I have experienced this very thing, that a period of intense pain and confusion is followed by a deep knowing of my next steps. It’s almost as if within the suffering I have no choice but to focus on what is most important to me, and everything else just falls away. There are no more distractions, no more avoiding the truth I need to see. And whilst I’d love to have that clarity without the suffering (wouldn’t we all?) I find it has become easier to face the dark times knowing from experience that the light usually follows.
But what about the darkest of dark times?
Of course, when you’re in the midst of something that is deeply unsettling, there’s not much more you can do but try to survive it, right? Although I have suffered from pretty intense anxiety over the years, it is incredibly rare for me to feel depressed and hopeless. The few times it has happened it has been directly linked to something happening in my life (the two major examples have been workplace discrimination and workplace stress). So, of course, once I get out of those situations the depression lifts.
I had a similar experience this month with the severe vertigo, to the point where I really didn’t want to be here anymore. I’m not sure I’ve ever reached a point where I have become what you could consider suicidal, but that’s what I hit earlier this month. It’s not that I didn’t want to live, I just didn’t know how I could survive any longer with the world spinning around me. Every time I’d have a couple of days where it felt like it was improving, I’d be hit with the severe symptoms again. I felt completely out of control and unsafe, because even laying in bed left me feeling like I was moving when I wasn’t.
I posted this on 6th March, and I honestly didn’t know how I was going to get through it.
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I don’t know how else to say this, but I’ve hit my limit in a way I very rarely do. 7 weeks of vertigo and dizziness is just too much. And it’s triggering all sorts of trauma for me related to the last time I was this debilitated for this long (with Hyperemesis during my pregnancy, which incidentally started in January and hit its peak in February-April, meaning the trigger is exacerbated by memories of being stuck in bed for weeks on end at this exact time of year). Last night was horrendous. After feeling like I might finally be making a bit of progress earlier in the week I ended up feeling as awful as I did right at the beginning of this bout with labyrinthitis. For hours it felt like my head was full of mush, my ears were ringing and felt full, and I felt like I was moving when I wasn’t. I’d reached a point only earlier that day when I’d realised the “bouts” of vertigo were only lasting for a few seconds maximum and the overall dizziness was less distressing. And then BAM, right back to square one again. To say I’m gutted is an understatement. I am so tearful today, but can’t cry fully because it makes the vertigo worse 😢 but the tears are still falling. I doubt it’s BPPV as I can do the half somersault Maneuver without triggering it. It’s just happening. Whether it’s labyrinthitis taking forever to heal and exacerbated by a recurrent cold and/or my migraines, or something new like Ménières (which I doubt as I don’t have hearing loss) is unknown. The GPs just keep prescribing different vestibular suppressants and taking a “wait and see” approach. Which again reminds me of my HG experience of GPs underestimating the distress caused by my symptoms and offering meds that barely touch the symptoms at all. I’ve been doing vestibular rehabilitation exercises, going out for walks around the block when I can, balancing rest with activity to help my brain start to compensate, but still it continues. I’m missing out on so much of life, and even O said a little prayer last night about how little I can do 😢 the guilt is huge, and the fear I won’t be well enough for my Grandma’s funeral later this month or our trip to Glastonbury at Easter is huge. (Cont. below)
Thankfully I did (it made me stop all of my meds other than OTC painkillers and my migraine preventative), and things improved dramatically afterwards. I’m still having bouts of dizziness and my head still feels full of cotton wool at times, but I am no longer constantly spinning. My best guess is that the vestibular suppressants were affecting my brain’s ability to compensate, and because I am also struggling with a recurrent cold and my usual migraines my poor brain is struggling enough without something hampering it’s ability to adapt. Add in the lack of balance and proprioception caused by my EDS (and made worse by my lack of movement thanks to the fatigue and migraines), and it’s no wonder my recovery has been delayed so much this time around.
Anyway, I am now doing much better than I was 3 weeks ago. I have been able to do things like go for a walk around the block without a walking aid, play in the garden with Little Man, and hang the washing out without falling over. And whilst there is remaining dizziness, and I’m still scared of it getting worse again, the more time that passes the easier everything is becoming.
One of the “gifts” of being so intensely ill for so many weeks is that it finally made me take the next leap forward in terms of balancing the priorities in my life. For several years now I have been aware of how unbalanced I have been when it comes to setting healthy boundaries in my life. I have always put other people’s needs and emotions above my own, often pushing myself far beyond my limits so that I could be a “good” person. I’ve done it in all areas of my life, both personal and professional, and it has had a massive impact on my health and well-being. I often think that it’s no wonder I got as ill as I did a few years back, because the years leading up to that were a flurry of caring for everybody but myself.
And of course, following that same thinking, it would be impossible to heal properly without learning to put healthy boundaries in place. But even though I’ve known that on a rational level, putting it into practice has been hard. The amount of guilt I have felt over all the things I cannot do over the past few years has been huge. So much of my identity as a “good” person was tied into the things that I did, the way that I cared for and supported others, and the things I managed to achieve despite my illness. So getting so ill that I was unable to do even the simplest things like cooking a meal, shower every day, or doing the school run has had a massive impact on my self-esteem. When your days consist of resting through intense symptoms with no end in sight, it’s easy to feel like nothing more than a burden. The carer becomes the one being cared for. And that’s hard.
Because of this I have had a tendency to both push myself beyond my incredibly limited limits and avoid doing the things I need to do in order to heal at the deepest levels. I’ve continued my old patterns of “pushing through” and just “accepting this is my lot”, beating myself up for all I cannot do. But getting so acutely ill with the vertigo made me finally pay attention to how little control I have over my health, and why I need to do everything I can do to support my own personal well-being, both right now and when moving forwards. I still have hope that my body can heal itself, but it has no chance of doing so if I’m constantly fighting it.
What this means in practice is that I am learning to prioritise my own needs, without feeling the need to justify doing so to anybody else. Whereas this would have previously felt “selfish” (and still feels intensely uncomfortable to do so), I am learning to reframe it as both vital and natural. How many times are we told in life that in order to help another we have to first help ourselves (air masks on planes, anyone)? And how often do we actually put that into practice? If I’m ever to get well enough to return to work and do more with my family, friends, and wider community, I need to first focus on building up my own strength. Otherwise I will spend my entire life battling symptoms and doing the bare minimum. Short-term “selfishness” for long-term “selflessness”.
There have been a few other changes this month, which deserve a mention. The first is that I saw a chiropractor a couple of times before the lockdown measures came into place. This is something I have to be careful with because of the Hypermobility aspect of my EDS, but we found a chiropractor who was aware of the need to be very gentle and take a slow but steady approach to realigning my very wonky body. Of course that’s now on hold, and two sessions wasn’t enough to see much improvement given how slowly we were going.
We’ve had to postpone our trip to Glastonbury from the Easter holidays to October, and are hoping that by the Autumn we’ll be able to travel (but are aware we may have to postpone again if not). As sad as I am about this, I know we will enjoy a trip to Glastonbury at any time of year and look forward to walking in Avalon again one day.
I’ve continued my daily chanting and am currently nearing day 80, which is incredible. I’ve also been joining in with the daily live meditation with One Woman Revolution whenever I could, learning lots of new tools to add to my toolbox for these challenging times. I also watched a live chat with Annabel Du Boulay, again learning new ways to connect with the peace within during unsettling times. And a few members of The Faith Space came together online, and I’m now posting daily reminders to “check in” with ourselves, because it’s very easy to forget to take a few moments out of the busyness, isn’t it?
Finally, I’ve started listening to Harry Potter in audiobook format, which is a fun way to reimmerse myself in the world of Hogwarts. The last time I read the books was during my pregnancy when I was stuck in bed sick, so it seems this is one of my go-to series for the difficult times in life!
I think that’s about it for my monthly round-up. What a month has it been. And I suspect April will be just as (*ahem*) “interesting” in many ways. I do hope you are all doing okay, and have been able to connect to the community you need right now in some way. Don’t forget it’s okay to prioritise your own needs right now when it comes to things like social media. Take advantage of the ability to “snooze” people and pages on Facebook, or mute keywords and phrases on Twitter. You don’t have to unfollow people if you want to stay connected once all this has passed, but you also don’t have to fear seeing the next update which causes your anxiety and stress levels to rise.