Does anyone else feel like this year is just whizzing by? I can’t quite believe I’m already writing my 5th monthly update for this year. And yet so much has happened in 2020 so far that I find it very hard to grasp that we are not even halfway through it yet. It feels like as a society we’re experiencing a lifetime’s worth of challenges and change all at once, and it’s incredibly overwhelming in many ways. Which is why I’m actually really grateful that I’ve been documenting this year month by month, otherwise I’d have completely forgotten half the “smaller” details of what we’ve been through. As it is, I find it tough at the end of each month to remember what has happened that month and not before it.
May has been a pretty intense month in terms of awareness, which as you know is something I am passionate about. I spent the first part of the month trying to take part in a daily prompt about how M.E. has impacted my life. Whilst I enjoyed creating the content to begin with, it started to feel very heavy and exhausting being reminded on a daily basis of just how much has been taken from me thanks to getting this ill. So for my own sense of well-being I had to stop posting about it after a while. But I still continued to support the cause, and was hugely overwhelmed when Anna’s Blue Sunday Virtual Tea Party for M.E. raised over £5,000. What an amazing highlight of the month that was!
Awareness days are not new to me, which is something I reflected on for Hyperemesis Gravidarum Awareness on 15th May too. This day is very bittersweet for me, and I often dread going online that day because of how many posts I will see. For the first 3 years of Little Man’s life I was deeply involved in raising awareness and funds and support for the HG community. I organised handmade auctions. I volunteered and then worked for a charity, talking to sufferers and survivors on a daily basis (which was mentally and emotionally draining in a way that I could never have imagined). I wrote a book about it. And I burned out massively and left the community feeling the lowest of the low. It created a trauma in me that was far greater than the actual trauma from my pregnancy (which I consider to be very minimal, certainly far less than what I heard from many other women. I consider myself incredibly lucky to have come out of the pregnancy itself relatively unscathed, especially given how awful my treatment or lack of treatment was). Anyway, because of the trauma connected to the awareness of HG, I do find May a particularly challenging month. Which may also explain why I ended the month with the worst migraine, as I share below.
A month of ups and downs
Healthwise May has very much been a month of ups and downs. Several times throughout the past 31 days I have reflected on how my “bad days” didn’t seem to be so severe and that I was getting some more “better days” in between them. We got out for several walks as a family, twice to a local nature spot. And I realised that even when my head felt icky mid-month I was still able to function in a way I hadn’t been able to for several years. I started to attribute this improvement to a combination of increasing my migraine preventative medication as well as reaping the rewards of my daily chanting practice and being a bit more careful with my diet. But then this past week I had the worst migraine I have had in many months, and began to question my improvement completely.
Normally when I get a migraine I take a migraine abortive and it eases it somewhat that day and I’m feeling better by the next. This time I took my migraine abortive two days running but still had the worst migraine on day 3. It just would not shift at all. I’m not sure exactly what triggered such a severe migraine that had me completely bedridden for days, but I do think a certain amount of anger and feelings of helplessness contributed to the overall effect. Partly because of the intensity of the awareness days as I mentioned above, but also partly because the few days before this migraine hit I’d returned to checking Twitter (something I hadn’t done for several months because I recognised it was making me angry and anxious).
I’d been sucked in by the whole Dominic Cummings breaking lockdown saga, and as a family with two chronically ill parents, a child with ASD (and suspected ADHD), who had turned down a school place offered because of his EHCP and hadn’t had any support from my parents who live just around the corner for many weeks, I felt particularly angry that he had felt it okay to drive so far “on the off-chance” he might need help with childcare. Tim and I have had many times when we’ve been very ill and still managed to look after our son, just like so many other parents out there. It felt like such a kick in the gut to all the single parents, working parents, disabled parents, new parents bringing a baby home for the first time, and anyone else who had somehow managed to balance childcare with the massively challenging situation that lockdown has brought without the support of family who might even live far closer than the 260 miles Cummings had travelled. I do not, for one moment, believe that had he become so ill he couldn’t safely care for his child that there wouldn’t have been someone nearby who would have stepped in to help out. Communities have been coming together to support each other throughout lockdown in whatever ways they can, and they would have done so for him too.
Finding a new balance
Anyway, ranting aside, this whole episode made it abundantly clear to me that my actively avoiding the news and Twitter for the most part has been a good move. I realised during the run up to the General Election that whilst I am massively passionate about raising awareness of and supporting the causes of many people who feel deeply unheard, I do need to step away from it all for the sake of my own mental and emotional well-being from time to time. Last year I wrote the post, “I wish I could care less” and it still holds true to this day. I do wish I could care less sometimes, because it has a massive impact on my health right now. However I’m trying to find a new, better balance between feeling like I have to be right there in the middle of the fight for justice and turning away from it completely.
But finding a new balance is incredibly hard, especially when the injustices facing our world keep coming thick and fast. There is so much to feel anxious and angry about in the UK’s handling of Covid-19. The government’s contempt for the people, especially those it considers “expendable” is showing up like never before. And we’ve had the awful news this past week from the US of the murder of George Floyd by police officers, and the threatening behaviour of Amy Cooper caught on camera by Christian Cooper. Both raising awareness once again of the systemic racism that is rife not only in the US but here in the UK as well. Both asking us to wake up to the reality of what black and brown people experience on a daily basis, and how our white privilege has made us blind to this. It is heartbreaking to see, and my immediate reaction is to dive as deep as possible into trying to enact change.
Racism and White Supremacy
The problem with that, of course, is that there is so much I need to learn first! My gut reaction comes from a place of shame and guilt for what is happening, and I need to be sure that my responses remain about supporting people of colour, rather than alleviating my own uncomfortable feelings. As this excellent post by Katie Anthony explains, too many of our reactions are about us and not about others. And so whilst it is unusual for me to not immediately respond to the situation with a load of words in a blog or social media post, I have been consciously choosing to spend my time watching and reading and listening and learning from as many sources as possible. Last year I wrote a post which included the lines, “I’m racist, because my white privilege has made me blind to systemic racism. But I’m going to do better.” Those weren’t hollow words, I meant it, and this is my attempt to do better.
Over the weekend I watched 13th on Netflix, and I would recommend it to anybody who wants to understand more about racism, particularly in the US. I have never before seen something that so clearly explains how we got from the abolition of slavery to where we are today with mass incarceration in the US. There was a lot I didn’t know. And understanding how “reform” often leads to just more of the same was truly shocking. I wish there were a similar documentary covering racism in the UK, because interestingly I know more about racism in the US than I do in the UK purely because my education covered more of it (we studied books like Roll of Thunder, Hear My Cry and The Color Purple in English, for instance). I also watched the intervew between Ava DuVernay and Oprah Winfrey about the making of 13th, which I highly recommend as well.
I’ve also bought a couple of books, So You Want to Talk About Race by Ijeoma Oluo and Me and White Supremacy by Layla F Saad, and have several others bookmarked for later. Little Man and I are also reading a kids’ book on racism and I plan on finding more books we can read together at a level he can understand too. I feel that there is so much I need to learn about this, and I am determined to do so. If anyone has any recommendations of books on racism that specifically look at racism in the UK as well, I would appreciate them being sent my way. There is often this misconception that racism isn’t an issue in the UK, but it really is.
Finally, I am spending my time on Twitter reading and retweeting posts by others, in an attempt to both learn from and support those who have done this work already and are out there making a difference. The people who are living and breathing it, either through lived experience or anti-racism work or both. It feels more important in this moment for me to lift their voices up than my own. And whilst it all feels woefully inadequate, I hope that it makes some difference, even if that’s simply raising my own awareness and encouraging me to make changes to how I view the world.
Learning to share in “short form”
Something which struck me this month was that I was feeling completely torn between my desire to connect with others and my need for rest. For instance, I have ideas for books (both fiction and non-fiction) and yet I am simply not well enough to do anything about them. The same is true for blog posts. I found I was spending more time on social media, and that maybe I had been worrying about working on the wrong thing. Instead of spending hours working on “long form” content like books and blog posts, maybe I’d be better building up my social media content. Social media is something I have done for employers and clients in the past, and since lockdown began I have been sourcing and scheduling content for our church’s page so that something goes out on a daily basis. This is a lot of work, but actually takes less time than a lot of my blog posts do, because of the ability to break content down into smaller chunks and the option to bulk schedule content. And yet, for some reason, I have always focused so much more on blog posts and have never really developed a strong social media strategy when it comes to my own work.
Part of this, I think, is because I was a blogger first. I began blogging in 2006, long before social media became the huge thing it is today, and so I guess I felt a certain sense of dedication to it. And I do love being able to write posts like this or those which cover subjects in great depth. But interestingly the posts that tend to perform best on my blog are those which I don’t write many of (such as lists of recommendations like my YouTube Channels for Kids post and my Tried and Tested Cotton Yarns for Crochet post). Posts about my everyday or my spirituality and faith don’t really get much traction on the blog, and yet when shared on social media they do get interaction. So what would happen if I moved more towards using Instagram and Facebook as “mini blogs” and focused more time and energy on there?
This is something I hope to explore further during June and July as I work through a 6 week platform building bootcamp with Kara-Kae James. I have been following Kara-Kae ever since my pregnancy with Little Man in 2011, and so during that time I have seen her build up a hugely successful online ministry, publish several books, and launch a new podcast. So I cannot wait to learn more from her and dig deeper into my why and how and hopefully develop the kind of community spirit I’ve always dreamed of having for sharing my knowledge and experience of walking between worlds and mixing Christianity with more New Age practices. I am sure there must be an audience out there for this, but I have no idea how to reach them.
One thing I did do was ask people who already follow me on Instagram and Facebook what kind of content they might like to see more of. One response was a deeper dive into the chakras, as so last week I started a new series working through the chakras one week at a time. Last week we did the root chakra and this week it’s the sacral chakra. I chose a key theme for each one, then looked at ways to support the chakra, crystals, and yoga poses too. I’m excited to see how the series develops.
The sad news this month for us is that our remaining guinea pig, Thomas, died a few days ago. We noticed on Thursday evening that he was just laying by his food bowl and didn’t look right at all. We decided to see how he was the next day, given it was hot and we wanted to see if he perked up. But her didn’t. He hadn’t touched his food, we couldn’t even get him to drink any water, and so we took him to the vet for an emergency appointment Friday morning. They said he has gut stasis and his heartbeat was very irregular, and gave us 3 types of medication to try. But sadly he passed away later that day. Guinea pigs have a tendency to suddenly go downhill like that, we’ve discovered. Percy, Thomas’ brother, died suddenly last Spring too. We are all very sad to have lost both of our piggies within a couple of years and will desperately miss the way they chatted away to us (or rather demanded food every time they heard the fridge door open!!)
Better financial insecurity
Finally, the biggest change this month has been that some of my inheritance money has come through, allowing us to clear our debt (which we got into when both Tim and I became too ill to work and the benefits system failed to support us – I’m still waiting for my PIP appeal 18 months and counting…) We’re also preparing to move out of our little council bungalow (freeing it up for somebody who really needs it, like we did 2 years ago) and moving into my uncle’s old house which my dad has inherited and from whom we will be renting. There’s a certain amount of uncertainty over when we can move, given lockdown and the fact we need help to move. But we’re slowly getting the odd boxes packed and letting my parents take them out to the new house to save doing it all in one big push once we’re finally able to get help to move.