Nourishing the Soul

Posted on by SingleRheum

As this is my first blog post in ages, hello! Combination of reasons which I’ll maybe touch on another time, but long story short the urge to write just came & it can never be ignored so here we are again.

This was inspired in particular by a twitter post from one of my favourite historians, Dr Janina Ramirez, who is a joy to watch on TV & follow online; she comes across to me as bright, passionate, quirky, kind, & beautifully her own person, & I admire her very much. Her post is below, I’ve also typed out the text in full for anyone using screen readers.

I’ve not been on twitter much. It’s a combination of things. Anxiety over the state of things. A Covid response & going more into myself. A loss of interest in promoting myself & thinking my own interests pale against the concerns of so many. But I still send you all love ❤️

Dr Janina Ramirez 28 August 2020 twitter

Basically what happened is I started writing a simple reply & realised I had thoughts. Lots of thoughts – In essence what I wanted to say to Janina was simply please do whatever you need to keep yourself as well as possible. It’s what we all should do. And if that means breaks from news or social media then of course that’s OK 😊 These are trying times for us all, when you are able to share lovely art it brings me & others joy, but I totally understand that has to be when it feels right to you & you have the mental energy & space to do so.

But I feel quite strongly that the second point Janina makes is a wider reaching conversation; namely “a loss of interest in promoting myself & thinking my own interests pale against the concerns of so many”. I’ve seen other people in the public eye (I hate the word celebrities), people who I believe are decent & kind people make similar comments over the past weeks & months. It’s totally understandable, 2020 has been a shitstorm of epic proportions & by direct comparison is sharing a piece of art or poetry or a song or a dance routine or a recipe or a fabulous cocktail important when held up against against Covid-19, BLM, or the state of Politics?? Definitely not, & at the same time Abso-fucking-lutely.

I believe when we stop feeding our souls we start to lose our humanity. When days are dark & times are troubled & we’re uncertain about tomorrow is exactly when we must make time to nourish the best part of ourselves, the part that can lose our eyes in a painting for hours, be it Picasso or Van Gogh. The part that allows music to transport us to far off times & places; poetry to allow us to feel empathy & connect; comedy to remind us to laugh & that life itself is often wonderfully silly; ballet where dancers take flight to tell stories with no words; history programmes that continue to investigate our past & allow us to learn & improve & have hope for our future.

Often it’s what might seem trivial in comparison to the “big stuff” that brings us our daily moments of joy & the strength to put one foot in front of the other & smile, if we can but pause to take the time to notice.

So to end, I would ask anyone, not just people with a large audience, when you feel able to please share your small stuff – the cakes you’ve baked, the photos you’ve snapped, the art you love, the stories you write & the music you rock to, & if it happens to be what you do for work please don’t apologise. If you bring even 10% of your viewers, readers & listeners a little joy & a smile to their day then I think that’s fantastic!

Namaste 🙏 💙

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Defined by?

Posted on by SingleRheum

A recent thread by @HannahPearl_1 on twitter questioned the suggestion from someone that “it’s important not to be defined by” our illness. Hannah went on to say she understood what the person meant but didn’t feel able to agree.

This got me thinking. ‘Defined by” is a term that crops up a lot in #ChronicLife circles & forums online. People tend to be either against it as somehow limiting, or in favour of it because our illness affects every aspect of our lives.

But what does ‘defined by’ actually mean? I’ve had a trawl through Merriam Webster online looking at meanings & synonyms to try & pin down a definition, and it’s a little slippery. But I love language so let’s give this a go!

Defined has a number of uses which vary the meaning:

  • to draw or make apparent the outline of
  • to mark the limits of
  • to point out the chief quality or qualities of an individual or group

It’s the second & third definitions I’m interested in here, because I think this may be where the divergent opinions around the phrase derive from. Let’s have a look at both…

To mark the limits of

If one applies this to living with a chronic condition I would take ‘defined by’ to mean that we acknowledge our illness affects us in ways that inhibit the way we live our lives. For me this meaning absolutely applies to my life. Inspiration porn often tells us nonsense like “the only disability is a bad attitude”, and this simply isn’t true.

Current popular ideology leans towards telling everyone they can be anything, do anything and there are no limits, which is a lovely sentiment in fairy tales but totally untrue in real life. We all operate within limits, whether they’re the law of gravity or simple genetics – someone like me with red hair, pale skin & freckles is never going to achieve a suntan!

That doesn’t mean giving up on ambition & dreams, or never setting goals, of course not. We all need things to strive for, to challenge ourselves, to work towards. What it does mean is that we can live our best lives by focusing on the possible, the achievable, and taking steps at our own pace to get there.

To point out the chief quality or qualities of an individual or group

Applying this to living with a chronic illness implies that we are characterised by our condition, that it becomes an intrinsic part of our being. Again, this undoubtedly applies to my life. I am no longer able to separate out my illness & disability from who I essentially am, and I don’t see that as a bad thing.

This doesn’t mean it is all that I am or can be, just that #chroniclife is entwined with my sense of self, my lifestyle & my place in the world and I’m very ok with that. I think this is completely natural human behaviour – if I flip back in time to when I was working my whole identity was entwined with my career in the training sector, which is why it was initially so very hard to accept having to effectively retire. I wasn’t sure who I was without being defined by what I did.

It doesn’t help that as a society we value people by what they do, not who they are, and we love putting people in boxes & applying labels. Would I let anyone else characterise me or define my limits? Not a chance. But as a chronically ill person with disabilities I’ve definitely earned the right to set my own.

And I choose to identify with my illness, my disability, and do so proudly. It’s taken me a lot of work & some fab therapy to get to this point in my life, and I’m happy to own it.

But you know what? If you don’t feel this way that’s fine too, surely one of the most important things we do is choose how to define ourselves 💙

The Mercurial Whirlwind..

Posted on by SingleRheum

*Content warning – suicide

On Monday 19th February it was eleven years since my Dad phoned me early one evening to tell me that my younger sister Mary had died. She was 35.

You hear people say things like “I knew it was bad news when the phone rang” but I genuinely went cold on the first ring – I’ve no idea how to explain it, but I swear I somehow knew it was really bad news about Mel.
Unfortunately she had ended her own life. I could speculate for hours (and did initially) on exactly why, but it serves no purpose. The simple truth is that at that moment in time she needed to stop. Undiagnosed depression certainly impacted her actions.
But that was how she ended, it wasn’t who she was. I’m not sure I have the words to capture the mercurial whirlwind that was my little sister. No one else has ever made me laugh (or cry) so hard. She was beautiful, funny, kind, generous, quixotic. She was also stubborn, defensive, argumentative and had a flash temper that raged white hot then just as quickly was gone.

She’d unexpectedly turn that megawatt smile on you and you had no choice but to grin back.

As kids we fought so much, but had each others back, always. I have loads of fabulous memories, good and bad, and that’s how it should be, saintly she wasn’t!

I remember at the time she died being unexpectedly angry with her, simply because we were supposed to grow old together. Losing her was hard, but it was almost as tough dealing with the loss of both past and future memories.

There is no-one else who remembers how to play “mummies, daddies & little darlings”, who knows how you had to step over the second floorboard from the bathroom door because it creaked so loudly, who swears she saw a ghost in our kitchen, who could play connect four for hours, who can remind me how I taught her all the basic swear words after she begged me to! Who was my partner in crime on teenage hair and makeup, and my best friend even when we ‘hated’ each other.

It’s like I lost some of the vibrancy from my past memories when she died, they’re still there, but without her to help me take them out and polish them or argue over them they’ve faded.

Of course we should also already have another eleven years of adult sisterhood to mull over. But she’ll never make a new memory in this life, as much as I carry her with me always.

There’s simply a Mel shaped hole missing from the second half of my life.

So I want to use this post to let anyone who is feeling like they want to stop know they are not alone. You are worthwhile, you are seen, you are loved. This really will pass, so please reach out for support in whatever form feels comfortable. I promise help is out there.

UK & ROI Samaritans – 116 123

USA – Lifeline Chat – 1-800-273-8255.

Australia – Lifeline – 13-11-14

Canada – The Canada Suicide Prevention Service – 1-833-456-4566

Dear Newly Diagnosed…

Posted on by SingleRheum

You obviously feel in need of support.
I do remember that feeling – that you are really struggling with the whole idea of having RA – of becoming chronically ill.

So you’ve joined a support group, seen a few posts about surgeries and disability and people trying their third biologic, now you’ve gone from slightly concerned to terrified!

It’s important I think that newbies to #chroniclife are made aware that it tends to be those with more severe symptoms who gravitate towards support groups or twitter, and stick around. It’s important we acknowledge that around 40-60% of those diagnosed with RA and treated early will likely achieve controlled remission with medication. That’s actually pretty good odds. And those people often never feel the need to look for support groups online or to stay around if they do.

So our tribe tends to be those who’ve been a bit battered, often suffering with mental as well as physical issues that ergo cause emotional as well as physical pain. It means sometimes posts and tweets can seem dark or bleak, but it also means we have a fabulous empathy with each other and are able to give outpourings of love and support and prayers whenever they are needed – we’ve been there, and many of us have come out stronger for it.

And that’s a really important thing to know – we do come out the other side. My first year with RA was dreadful, I lost my job, I was made homeless. My depression spiralled. It was a dark time, perhaps not dissimilar to where you may find yourself now, and without my online tribe (not forgetting my wonderful IRL family & friends!) I’d have collapsed. These fabulous, generous strangers kept me putting one foot in front of the other when I couldn’t see the way forward. They held up a light.

It was hard and it was sad and it was painful, I won’t pretend otherwise. Antidepressants helped, my GP helped, psychotherapy helped, group therapy helped, and very gradually my feet found new, firmer ground. On balance now I can honestly say chronic illness has brought more good into my life than bad.

The worst happened and the sun still rose and set. That’s life changing right there. Survival. Some great therapy led me to mindfulness which lead me to meditation and gratitude. Despite being ridiculously ill and in constant pain I am genuinely happier with myself than I’ve ever been in my life.

RA was the brute force needed to make me stop & smell the coffee. I know it touched me for a reason. I live more spiritually and much more slowly, I treasure my friendships, I’m more sympathetic, more patient & more kind. I’m grateful for the smallest things, a warm bed, hot coffee, a good book. I’m no longer impressed by the material, but hearing a bird sing or watching the clouds move can and frequently does fill me with with joy. My path has been irreconcilably altered by RA and I’m the better for it.

Yes I still have dark days. I’m very ill, with RA, ME, Fibro & other conditions. So I have constant pain and take a lot of meds. I’m still on antidepressants and fully expect to be for life, they boost chemicals I need to be me and I’m more than fine with that. But my darker days are just that now – days. In the past they would have been weeks or months, my coping strategies developed and yours will too.

I wanted to share this with you not because you’ll do the same or feel the same – we all walk our own path through this life. But to hopefully reassure you a little that you absolutely will find your way. Chronic illness is not an end but a shift to a new beginning, an altered life does not have to be a lesser one.

My newcomer tips?

  • Get enough rest.
  • Listen to your body, if it hurts, stop.
  • Build your pain toolkit – meds, gels, ice, heat, tens, marijuana, movies, whatever works for you.
  • Let go of worry about what others may think – it really doesn’t matter.
  • Look after you – baths, chocolate, candles, pamper yourself.
  • And always, always remember to be as kind to yourself as you would to others – we are way too hard on ourselves.
  • Practice #selfcare daily

Sending blessings, Namaste 🙏🕉️💙

When less becomes more

Posted on by SingleRheum

I realised this week that I’ve been blogging about RD for over a year! So much has happened in that time, the blog I wrote this week last year, Living in Limbo, was about finding myself homeless, things were certainly very up in the air and nothing felt solid or stable.

I’m very grateful to have had some amazing support since then, I’m settled in my little bungalow with my cats and feel on a much more even keel. Constant change is unsettling, especially when it’s not because of choices we’ve made.

I’d say my key word for the past twelve months has been ‘acceptance’. It’s been a long process but it’s definitely the fulcrum around which my improving mental health resolves… I can feel a whole separate blog there 🙂

It’s often the simple things that can resonate with us the most. A conversation with my psychotherapist a few months ago is a great example, I’d been telling her how I kept looking ahead and just seeing no end, no way out of feeling ill and frustrated and trapped and out of control. She said

‘everything changes – from your pain levels to the weather’

and although it didn’t help immediately as I was having a low day it stuck in my mind, and she’s absolutely right.

Things do change, they will change again, the trick I’ve since found is to try to live more in the moment, enjoy each hour, each day, each small success – looking ahead is actually counter productive, especially when it feels bleak.

Depression is horrid, I’ve had it for over four years now, and of course it’s often common for people to start suffering post diagnosis, which is hardly surprising. But I honestly believe with a combination of meds and talking therapies it’s absolutely possible to enjoy better days!

The second simple thing that resonated was even more basic, but I strongly believe it’s worth sharing.

Change that ‘why me? ‘ to ‘why not me?’

I know it sounds really simplistic but just churn it over for a while. Think about what it actually means. “Why me” implies some cosmic force has said ahh yes you, you need RD! Isn’t it much more likely that it is just down to a random combination of genetics and environment? The simple fact is that it’s not personal!

RA has literally turned my life upside down this past year, I first lost my health, then consequently my home, my job, etc etc BUT…. It has over the same period made me completely reassess my priorities, my way of life, and I’m now starting to work out what it is I really want.

I’m not there yet and wouldn’t pretend to be, but boy it feels good to have had the breathing space. I’ve been forced to step off the treadmill, to stop, take my time, breathe! And the ‘worst’ happened and you know what? Not only have I survived but there is still joy in my life, and in being alive, I’ve just have to look a little harder and in different places. Meditation has helped hugely. I’m more grounded, I’m more peaceful, my life is simpler and calmer, and this enables me to focus on self care and my hope that I will be able to return to some kind of contributing employment in the future.

Yes, of course RA limits what I can do and when – it probably always will, but I will not let it limit who I want to be. You too will find a way, I promise 💙

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