You often hear people say ‘Life doesn’t give you what you can’t handle’. Other people say you are sent things to try and toughen you, ready for future trials – that’s a scary thought. As Kelly Clarkson so eloquently put it ‘What doesn’t kill you makes you stronger’, is probably the one I resonate with the most.
Chronic illness has taught me a lot in our eleven years of courtship. I can’t even begin to scratch the surface with everything it has taught me but I wanted to share a few things that come to mind; especially as, in my opinion chronic illness has made me into a far better person.
What has chronic illness taught me?
Stillness & Peace
Oftentimes, I look like a completely healthy and functional human being however there are a few people who have learnt to see through the mask I so often put on and I feel as though I have also learnt this skill. I have learnt to remain still and calm in the face of adversity. I have learnt to stop and observe my surroundings, to listen -to truly listen. Theres often no need for any input at all. People usually just need a friendly face and a listening ear for their woes.
My life was going down a specific road but in retrospect I realise that I weren’t truly living. I learnt to live for the little things -the warmth of a first morning tea, the way the dogs get so excited greeting me in the morning, the first sign of spring and the feeling of the suns warmth on your skin. There are so many things that I absolutely love that my boyfriend and family find bizarre. In those moments I have to remind myself that they have their health which means the mundane things I so deeply appreciate aren’t so special for them.
Chronic illness is a brutal motherf*cker but whether it be at the will of a higher power or that little voice in your head telling you that you can do it, you find a way forward; through the weaker, darker moments. We fight on, often with great hardship. We find a way because we know our voices still matter and we can still contribute something to this world. We don’t sit and dwell on our sufferings. We either allow it to control us or learn from experience and find ways to try to control it; or at least live with it.
There is so many variations of pain that can be felt – emotional, physical, relationships, financial, mental, etc and its so hard, near enough impossible not to be shaken by such intense pain. Your life completely changes and with that brings so much pain; however a benefit, is you also come across this immense, iron-like strength. Physically I struggle every second of every day but my mentality and spirit feels Herculean.
Empathy & Compassion
When you have felt the depths of despair and felt so helpless, like you’re drowning in a dark abyss you’ll never navigate your way out of you can’t help but feel empathy for others who have also experienced something similar. With great adversity and discomfort comes an understanding that is often more authentic given your own trials. You learns ways to recognise and support others in a way that is genuine and warm.
Before my illness, I was laser-focused on a set path which was incredibly different to how my life is now. Yes, no one ever thinks they will be ill but my purpose and identity has completely changed. I was constantly chasing a career, monetary goals, the perfect body, and so many other generic life goals. Now I live for moments of joy with my animals, family, and friends. Moments outside, feeling the sun on my skin and breathing fresh air.
Acceptance, Self-love and Self-care
I will always be gut-punched by the realisation that my life is not how I envisioned. It usually happens at milestones like birthdays, specials occasions like graduations, weddings, etc. From having a chronic illness and so much of my life being drastically changed, I realise many of my worries before were trivial. I face a whole other set of challenges which have helped me accept other elements of my life. I celebrate the small accomplishments I achieve in my daily life. I have learnt to look after myself and to accept defeat. To treat my body kindly when I don’t manage even the smallest of tasks. Being chronically ill has forced me to prioritise myself and my wellbeing in a way that I never would have had to before. So many of us get stuck in the rat-race and end up becoming burnt out. By practising some self-care and tending to our own needs, we become so much better at helping ourselves in the long run and others around us too.
I could write about chronic illness for so long but I won’t -I’ll refrain this time around. Today, the 12th May is M.E. awareness day which I why I felt so compelled to share this post today. So often I read posts about M.E. which are so great at educating people about it and other chronic illnesses but I didn’t want to go down that route. Instead, I wanted to share the positives that have come with my chronic health conditions. I will just say though, I will be spending this Sunday having my own dairy-free and gluten-free tea party for Blue Sunday, and if you don’t know what that is I highly recommend you head on over here and have a read of what it is and how it came to be.
2021 was a great year of reading for me. I really hit a great stride with my reading and the books I came across. Like my reading in 2020, I read a fair bit of poetry and discovered some new writers who I already have a list of their books that I want to read for 2022. I definitely delved into a lot of works other than plain old fiction which I am proud of and think I did a really good job of not only hitting my (altered) reading goal of 50 books, but surpassing it by doing 52 – proud bookworm!
So without further ado, these were my reads of 2021…
The Starless Sea, Erin Morgenstern: Ugh, this book. I have done a book review here on this one so you can read a bit more detail about it and my thoughts over there but I will just say this book for me was a bit of a let down. There were elements I loved and then ones that just didn’t work for me which was a little disappointing considering The Night Circus is one of my all-time favs.
The Witch Doesn’t Burn in This One, Amanda Lovelace: This book is the second in the Women are Some Kind of Magic trilogy and it was both my favourite and least favourite in the trio. I’ve gone into it in more detail here but briefly, while I loved the female empowerment in it it sometimes overstepped that boundary line into ‘man-hating’ which I’m not a fan of.
The Binding, Bridget Collins: A huuuuge let-down and just overall disappointment. This book had been hyped up to be something that it just weren’t for me but I do have a post coming out soon which goes into the details in more depth.
The Mermaids Voice Returns in This One, Amanda Lovelace: The third in the Women are Some Kind of Magic trio and yes, it’s also detailed in this post here with the other two. While I enjoyed this last instalment to the trio, I would say that I wasn’t as connected to this material as the other two and that definitely clouded my enjoyment of it slightly.
The Timekeeper, Mitch Albom: This was a good read, a bit of a slow-burner and a bit choppy at times with the pacing but it still made for a good read. It followed three storylines connected by time and the timekeeper, and just held so many nuggets of wisdom that made you stop, think and feel throughout.
September Love, Lang Leav: Beautiful -yet another amazing addition to Lang Leav’s catalogue of published works. Her words are eloquent and personal but yet relevant and relatable. I can’t wait to read more of her work in the future.
2am Thoughts, Makenzie Campbell: This was okay-sh. It had some relatable and interesting entries to it but as a whole was a collection of one-liners and sentences strung together haphazardly rather than thought-out poetry.
within these four walls, mindfully Evie: This was a tough read for me at times. I went into it in more depth in this post here. As someone with the same diagnosis as Evie at times her writing stepped over into the ‘sh!t this is a bit too real for me‘ area and reading is a form of escapism for me, so it probably wasn’t the most enjoyable however I think it would be a great read for anyone. I would especially recommend this to those who are family members of a chronically-ill person because it would truly be enlightening for them.
The Dance of the Serpents, Oscar de Muriel: Right lets try not to overwrite this absolute gem of a book… Now, I have a book post here reviewing it in more detail but all I will say here is 5/5 stars from me. The ending messed with me a little but it didn’t take any enjoyment away from my experience of this book. I cannot wait until the seventh and final book to series (for now) comes out in February this year (…just realising that is next month -eeep!).
The Favourite: Sarah, Duchess of Marlborough, Ophelia Fields: a very informative and well-researched read but it was quite stiff and dragged in large areas. It was also a bit too long for my liking. There were times when I thought I was reading something that was relevant to what comes next but in reality it was just more information in case you wanted it. I had to finish this through audible or I just wouldn’t have finished it.
break your glass slippers (you are your own fairy tale), Amanda Lovelace: Ugh, this book. This is the first in Lovelace’s you are your own fairy tale trio and this has to be, hands down my favourite of her works. It absolutely oozes female empowerment throughout with its consistent use of fairy tales, princesses and the reoccurring use of fairy godmother says. This is a wonderful start to Lovelace’s new trio.
Intimations: Six Essays, Zadie Smith: a bit of an impulse buy at the Waterstones check out but what a wonderful impulsive buy it was! Absolutely beautiful collection of writing full of little vignettes from throughout 2020. Really quite stunning and I thoroughly enjoyed the process of reading it. I went into more detail about it in this post here.
Twilight, Stephanie Meyer: ugh. a reread and total journey of nostalgia but so so good. Sometimes it’s just good to reread certain books – this took me back to when I first read it, as a twelve-year-old girl trying to fit into secondary school whilst also trying to figure out if I was team Edward or team Jacob.
New Moon, Stephanie Meyer: another reread of course. I actually have the LP of the movies soundtrack which I absolutely love so I did crack that out whilst reading a few times.
No Shame, Tom Allen: This book was brilliant. I would say it’s up there with my favourites this year and I even had to get it on audible too just to hear Tom Allens voice narrate his hilarious words to me. It was so insanely good and beyond hilarious! Ugh, I could talk forever about this book but I’ll just redirect you to thispost here where I got to gush about it a bit more.
I hope you stay, Courtney Peppernell: As you’ll go on to read, I have really enjoyed and fallen in love with Peppernell’s work this year but this one wasn’t as enjoyable as the others I have read. I would still recommend it but it just wasn’t my favourite.
shine your icy crown, Amanda Lovelace: A good second book to the new trio, you are your own fairy tale, but not groundbreakingly impressive. Having said that, this also had the same sense of female empowerment and unity as break your glass slippers; I especially liked the Big Sister Says pieces.
The Truth About Magic, Atticus Poetry: Some nice pieces but not up there with my favourites of the year. I would definitely revisit this in the years to come though – it seems like a body of work that would age well.
Tales of the Jazz Age, F. Scott Fitzgerald: A nice collection of some of Fitzgerald’s shorter fictional works. The Tale of Benjamin Button was included which was a really great read, especially given that I had only ever seen the film before.
Something Wicked This Way Comes, Ray Bradbury: ugh. so. bloody. good. I do have a post coming out with all my thoughts about this beautiful book. It was so much more than I could have ever expected and I anticipate it will be an annual autumn read for me from here on out.
Lamentation, C. J. Sansom: a recommendation from my grandfather. This is the sixth in the Shardlake series (I think) but I had no previous reading or knowledge of that fact. It was a slow burner but had so many plot twists and was a really great historical fiction read.
Shy: How Being Quiet Can Lead to Success, Annie Ridout: I am currently working on a post dedicated to this book. While there was some surface-level stuff in this, it also had so much great information and gems of advice that I really want to highlight and share so stay tuned for that!
7,300 Days, Isabella Mente: some beautiful pieces on depression and self-love but outweighed by traumatic and somewhat over-sexualised poetry for my own personal taste. My copy was also a used one with musings scribbled in pencil by the previous owner which made my reading so much more magical.
Magic Lessons, Alice Hoffman: This was an okay-ish read. It had elements that I really loved but there were other parts of the plot line that I could not get on board with at all. I haven’t read the four books that come after this though so maybe I’ll give those a go.
Introducing Marx, Rius: Having visited Highgate Cemetery (post to come!), my grandfather lent me this utter gem. This was such a great read! I felt so enlightened after reading this.
*Only Dull People are Brilliant at Breakfast, Oscar Wilde: a neat collection of the witticisms of Wilde and all that he embodied. A great little edition to keep on your person for light reading here and there. This was completed a few days into the new year so it is technically for next years list (oops) but I did start it this year.
*A Dance with Dragons 1: Dreams and Dust (A Song of Ice and Fire #5), George R. R. Martin: I started this book at the beginning of the year and I’m still yet to finish it – I know, it’s awful of me. I even got the audible to try make it more accessible and have less of an excuse not to read it but here we are so clearly that didn’t work out as planned. I will say that I am in the last quarter of it so you know, not far off but I really wanna get this done for 2022… and part 2!
I think for 2022 I want to read more books like Shy, the type of ones that help you grow and evolve a bit more but I would also love to read more informative, reference books. I already have a few to hand ready like this Art Nouveau one (I’m seeing the Klimt Immersive experience in August – covid permitting, so this will be a perfect read beforehand) and I also have a book called Heavenly Bodies: Cult Treasures & Spectacular Saints from the Catacombs which yes, I know sounds (and looks) weird but having read the first few pages already sounds absolutely fascinating so I cannot wait to devour that. I’m now wondering if I should write a To Be Read post… we’ll see. Anyways, I hope you all had a good year – particularly with your reading, watching, or whatever your thing is!
Dear Chronic Illness is a collection of letters carefully comprised by Pippa Stacey. The letters are written by individuals to their chronic illnesses and detail what they would say to them if they could.
Now having just said that, you may think this is a variety of letters running through sad health stories while a violin solo plays in the background -No, it’s not. These letters sing to a different beat. Sure, they give their accounts of the challenges living their lives with their condition but they also provide these experience with a light-hearted banter. The type of banter a lot of us adopt when life gets hard and we learn to laugh at certain situations.
Having said this, that’s not to say chronic illness is something to simply be laughed at or not to be taken seriously by others. Sufferers’ have a hard enough time getting our doctors to believe our symptoms let alone family and friends we have around us. However, these letters dance along that borderline of somewhere in between the humorous inner commentaries us sufferers run through day-to-day and letting non-sufferers into the more serious, and eye-opening challenges that we have faced.
It’s a book which will provide new perspectives to friends and families of those with chronic illnesses but also provide a sigh of relief for other sufferers’, who can take comfort in the fact that someone with the same condition as them feels the same way. It’s a huge validation for thoughts and feelings we may be too scared to vocalise for fear of being misinterpreted.
For me personally, I had so many moments where I just quietly smiled at myself, my heart growing warmer that I wasn’t alone in thinking or feeling certain ways about my illness. Below are some quotes and snippets I have pulled from different letters that I personally scribbled a wobbly line under or an oversized circle around to be able to find at a moments notice when I need it again.
Although you took my teenage years away, you replaced it with a perspective and outlook on life that’s hard to come by -Ellie Whiting
Without you, M.E., I might never have been lost in the wilderness. Without you, M.E., I might never have found myself there either’ -Elizabeth Guntrip
‘You have taught me that being disabled through chronic illness is not a life sentence to unhappiness, it’s just a quirk- I don’t know many friends that own a floral walking stick or have been steered around shops in a wheelchair, crashed into multiple displays and cried with laughter at it. -Ellie Whiting
…I will say this: I’d like to thank you, M.E., for opening my eyes. Without becoming so poorly, I wouldn’t have seen how many people are silently suffering, and how little support is in place for them. -Pippa Stacey
The hardest thing you took away from me, was my pride. Being in a wheelchair is liberating and allows me some freedom, but it’s not all fun really – I used to be taller than all my friends, and now I sit at bum height. It’s like a sea of bottoms when we go out! -Ellie Whiting (never related to something more)
I went from teenager to doddery grandma in a weird Benjamin Button-esque way; feeling physically ancient despite my biological age of nineteen -Lara Strong
I know it’ll always be there, I’m well aware that my conditions won’t miraculously disappear, but I also never expected it to be as bad as it is. A part of me forgets the torture of a flare-up: the frustration, the anger, the sadness. A flare is like an abyss, as there’s no end in sight at the beginning, it completely consumes me and there are times I’ve wished for death. But there’s always a flicker of hope. -Sarah Alexander
I wouldn’t be running a social enterprise in my Disney pyjamas -Pippa Stacey
I would recommend this read to anyone, not just sufferers’ or family and friends of sufferer’s but literally anyone. This letters provide an insight which is enlightening to say the least, and in all honesty it’s something I can’t quite articulate into words so please just go with your gut and give it a read if your intrigued.
this is a perfect phrase to fit explaining a flare. as a severe sufferer of multiple chronic illness’ I’m faced with the dilemmas of everyday life and how they may effect me in the long run. on one hand I have to pace myself and only use my designated spoons for that day otherwise I run the risk of borrowing spoons from future days, flaking out and causing a flare. a flare is something I, and many other spoonies, generally refer to as a
huge unwanted speed bump in life, which resembles more of Mount Everest than an actual everyday speed bump
sometimes a flare is a result of borrowing spoons and ultimately flaking out, but sometimes it can also pop up out of nowhere, and for no cause at all. It makes everything a thousand times harder and more of a struggle than what it usually is. Any Spoonie will know how hard everyday life is anyway but with a flare it’s like trying to save yourself from being immersed in sinking mud, yet you have weights & chains pulling you down. Which I, myself, feel like I’m going through now.
Let me give you a run down of a normal weekend outing, after spending the entire week laid up in bed or on the sofa.
You see on a Sunday I may go to lakeside, a regional shopping centre about a twenty minute drive from where I live, with my mom and nan. we usually get there, and park in the mobility car park which has it’s own entrance to Debenhams. once we get in my nan will need a coffee and something to eat so we’ll go upstairs into Debenhams own café. the café is so noisy for me. first of all there’s the background music which consists of a mixtape/podcast stuck on loop. It includes pieces of music, offers and competitions going on in store, and audio adverts for brands and designers they endorse in store. they have this at an average volume until it’s drowned out and the store tannoy goes on full volume to let someone know they’ve lost their kid and let them know where to claim them (I have hyper sensitivities, which include sound so it’s more like sitting in a gig than a café). than there’s the ‘clanky’ sound of plates; cutlery, cups & saucers being picked up and put down. there’s people chit-chatting, the chick in the corner having a “no you hang up first” argument on her phone, the old deaf couple across the way shouting their conversation to one another for the whole world to hear and than there’s the small boy throwing a screaming tantrum as his parents sit oblivious to the show their son is throwing. all of this has gone on, nearly all my valuable spoons have disappeared into thin air and my nan hasn’t even brought over our tray of drinks let alone the fact we haven’t even waited or had our food yet. so by the time we’re done in the café we need to hop back in the car to get home so I can hibernate after being out for a maximum of thirty minutes.
so with that in mind you can see how the littlest things can all add up and cause a right storm for a spoonies body -into a flare of all flares. and so the brick wall comes crushing down on me and your left in a heap on the floor reassembling the bricks in order to get back to how it was. when it rains it pours.
When I hear those words I don’t quite know how to react. You see on the outside I look completely fine and healthy (baring the wheelchair of course). Yet how I feel is anything but fine or healthy. I have a chronic illness. I suffer from an insane amount of pain all over my body, throughout my muscles and joints. This type of pain is too intense to be eased by medication. Its an indescribable pain which I don’t think I’ll ever be able to find the right words strong enough to truly describe. I experience painful sensations such as skin crawling, muscle twitching and pins & needles (unlike normal pins and needles). Its as though my body is an electrical storm of aching, burning, throbbing and spasms inside me everyday.
I am constantly tired, and live feeling nothing but sheer and utter exhaustion. The only example I could give of my exhaustion would be its as though a hoover came down from outer space and sucked the life out of me leaving me nothing but an empty shell of a human being. On the rare occasion of when I’m out I may suddenly need to sit, lay down or close my eyes. And I often suddenly go extremely pale and wilt. Only those with a keen eye pick up on this and notice that I’m running on low. I suffer ‘post-external malaise’ (fatigue delayed over a day or two after too much activity) which often hits you like a ton of bricks and you find yourself laying staring at your ceiling either praying, cursing or sobbing yourself to sleep.
Its not just physical exhaustion and pain that I suffer but also mental and emotional pain too. I find it very difficult to remember things no matter how important they are; I just cant remember. I get confused very easily and constantly feel mentally exhausted. I have a lot of trouble concentrating and focusing on tasks such as listening and participating in conversations; its not that I’m not interested in what people have to say its just that its really difficult to focus my attention to that one thing when my mind just feels so spaced out. Things like that are simple daily tasks but, take so much out of me. I constantly get stuck on my words and have difficulty working things out, planning and thinking ahead.
I suffer from a recurring sore throats and swollen glands. I get dizzy easy; especially when getting up from sitting and lying down; I often feel like I’m about to collapse or need to go rest when infact I’m already sitting/laying down. I get hot and cold fever spells, and always have cold hands and feet. I’m hyposensitive to bright lights, loud noises, strong smells, etc. For example -when my nan smokes I feel like I’m being killed from the inside out. Its a sort of heartburn pain but in my lungs, the sort of pain which you don’t know what to do with yourself so you just sit there holding your breath and hoping it’ll die down soon. I hardly sleep these days and constantly feel like a zombie. I’ve lost my taste buds, along with it my appetite. It hurts my jaw to eat and I often have trouble digesting my food. I have abdominal pains, stomach and gut problems. When I eat I’m put in a lot of discomfort and feel like I need a special machine that lets me sleep for 24 hours to get over my meal and get ready for the next meal. I have panic attacks and get anxious about everything, sometimes over nothing at all -yet I just can’t help it. Tightness of chest and chest pains is a serious recurring problem of mine too, as though there’s a tight belt wrapped around my chest and I struggle to get my breath. I am sensitive to certain foods and completely intolerant to many. My body reacts badly to medication, alcohol and chemicals including artificial sweeteners like aspartame which result in my heart going at a rapid pace.
So as you can see when someone says “you look well! feeling better?” I don’t know quite how to respond because all this is under the surface. If I sat trying to tell you all this A) you’d think I’m a hypochondriac B) we’d be sitting there an awful long time especially given the fact that I have trouble getting not only my thoughts and words in the right order but also verbalising it as well. Not to mention the amount of energy it would take out of me and how insanely tired I’d be. Chronic Illness’ are a lot like polar ice caps. As you go past them you see what’s floating above the surface, but if you were to put a diving suit on and take a plunge on beneath it you would see it’s a lot bigger and goes deeper then you could ever of imagined.
Also I think I speak on behalf of all spoonie’s out there when I say that “you look well! feeling better?” is on the top 10 list of things not to say to a chronic pain sufferer, especially if you value your life. Just saying.
What phrase or questions do you dread being asked?
With ME Awareness week approaching I’ve began thinking of the many posts that align with this event, and hopefully raising some much needed awareness. It was then that I clicked onto my Twitter feed and saw that a fellow spoonie, Anna, was running her Blue Sunday fundraising again this year. The idea of Anna’s Blue Sunday is to have a brew and a slice of cake, and donate an amount you would pay in a café which will go to the ME Association.
As someone who is all for fundraising and raising awareness, i asked myself how could i help? Then the lightbulb went off. I decided why not hold hold a coffee morning throughout ME Awareness Week? After thinking the whole thing through, and a quick message to Anna; I signed up to justgiving and made a page for awareness week.
**I might add; whilst making my profile page, I noticed something moving out of the corner of my eye and saw a tiny money spider was climbing across my keypad; I’m taking that as a good omen!
Throughout ME Awareness week, May 11th-17th, various business’ in my town will ply their customers, colleagues and friends with brews, beverages and cakes as well as spread awareness of this invisible illness. I think raising awareness is key, especially for chronic and invisible illness’ such as M.E; which are often labelled as ‘all in the head’ or ‘yuppie flu’. It’s important for people to take the time to educate themselves on invisible illness’ such as this, and spread on the awareness too.
I think, as much as we all hope and pray for a cure or some sort of universal treatment to ease some of our suffering, raising awareness within itself is another form of cure/treatment. I know, myself, what a difference it can make to feel as though people understand or at least try to understand what your going through. It makes everything a little less lonely and isolating, which can make such a difference on your emotional well-being and that in-turn is almost a ripple effect on other aspects of your health.
So mark ME awareness week in your calendar, and remember to boil the kettle, have a slice of cake (or two) and think of those, like myself, who suffer with this invisible and chronic illness on a daily basis.