Through the lens of chronic illness

My life living with a chronic illness

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Chronic pain doesn’t just affect the day — it changes the night too. I’ve written about what it’s like to lie awake when your body won’t let you rest, and the exhaustion that follows into the next day. It has a name: painsomnia.

Painsomnia: What It's Like Lying Awake With Chronic Pain

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Dynamic Disability: The Truth About Life in an Unpredictable Body

Dynamic Disability: The Truth About Life in an Unpredictable Body

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The Magic of Hope In the Storm of Chronic Illness

The Magic of Hope In the Storm of Chronic Illness

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"I hold my breath, always bracing for the moment my symptoms strike and knock me off my feet. My legs give out without warning, sending me crashing to the ground."

Disability And Its Hidden Anger: This Body Betrays Me

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Fatigue: A More Fitting F-Word For My Chronic Life

"For me, the real f-word is fatigue. Why? Because it is my most formidable adversary - an intensely debilitating symptom that not only obliterates my energy but also has the might to make my existing symptoms worse."

Fatigue: A More Fitting F-Word For My Chronic Life

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'Joy Existed Even if My Memories Were Not Free From Pain.'

'Joy Existed Even if My Memories Were Not Free From Pain.'

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I'm on Benefits, But Stigma Makes Me Feel Ashamed

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Why I'm Not Faking Being Sick; I'm Faking Being Well

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I recently came across this quote on #Twitter and thought that it just brilliantly summed up the experience of living with #chronicillness perfectly. Because although there are good days, sometimes even wonderful days - pain and illness are still there, still a part of that memory and experience. In my experience, there is never a day when pain or the #symptoms of the #neurologicaldisorder I live with are not there; it is my full-time job, just one where I never have a break or a holiday entitlement, and which I work 24 hours a day, 365 days a year. This illness and these symptoms have now been a part of my life for so long, I can no longer recall what it felt like when they weren't there, or what it feels like to feel healthy, what it feels like to feel well. #spoonie #chronicpain #chroniclife #chronicallyill #invisibleillness #spoonielife #chronicillnessblogger #chronicallyillblogger #spooniecommunity #neisvoid #wherethetiredgirlsare #chronicillnesswarrior #chronicpainwarrior #chronicpainblogger #fnd #functionalneurologicaldisorder #fndaware #voices4fnd https://www.instagram.com/p/CqIM1NLtGp2/?igshid=NGJjMDIxMWI=

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As Invisible In Books As I Am In Life

"The more time I spend inside books, the more my life feels as fictional as what I'm reading. Because books rarely reflect any fragments of my reality of living with a #chronicillness."

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At the moment, my pain seems to be off the charts most days, but despite this I have been in a quandary about whether or not to pop one of those little white pills. So often than not, the choice between pain or painkillers is.not an entirely easy decision to take. cramps, nausea and constipation, have kept me up on nights when I've taken them to help me sleep when the pain is so severe. Or sometimes, I've found that the painkillers have done nothing to take the edge off the severe disabling pain ravaging my back and legs. So often than not, the choice between pain or painkillers is not an entirely easy decision to take. #spoonie #spoonielife #spooniewarrior #spooniecommunity #spooniesisters #chronicillness #chronicillnesslife #chronicpain #chroniclife #chronicallyill #chronicallyillblogger #chronicillnessblogger #chronicpainblog #chronicpainblog #chronicpainsucks #painkillersdontwork #painkillers #chronicillnesswarrior #chronicpainwarrior #invisibleillness #neurologicaldisorder #neisvoid #wherethetiredgirlsare #FND #functionalneurologicaldisorder https://www.instagram.com/p/ClCNG5FtRMm/?igshid=NGJjMDIxMWI=

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One thing that I have learnt from living with #chronicillness and having to take many pills is that they can be difficult to swallow! (And I would love to know why the the smaller pills are so much harder to take than the larger ones!) But the physical pills are sometimes not as hard to swallow than the metaphorical ones. All the losses that chronic illness causes in life such as loss of relationships, your health, the future as you once planned are all devastating #spoonie #spoonielife #spoonielifeproblems #chronicpain #chroniclife #invisibleillness #chronicallyill #chronicillnessblogger #chronicallyillblogger #spooniecommunity #neisvoid #wherethetiredgirlsare #neurologicaldisorder #fnd #functionalneurologicaldisorder https://www.instagram.com/p/CkySCw5sfAi/?igshid=NGJjMDIxMWI=

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When I say '𝐼'𝓂 𝐹𝒾𝓃𝑒' I actually mean: - I'm struggling under the weight of constant, excruciating pain - It means I constantly live in survival mode, existing, not living, and never being able to leave it - t means that I’m fighting to maintain a positive, upbeat demeanour as much as possible, but there are moments every day when it feels too damn hard - . It’s a general term for I feel like death, but I have still exerted myself to get up and dressed to go somewhere that is not home - I'm scared that I will never get better, and that this Is my life now - I fear that I will get even worse than I am now, erasing the little independence I do have - I'm absolutely exhausted - I'm trying not to cry because it is sometimes all too much to live with - I'm NOT fine #spoonie #chronicillness #chronicpain #chroniclife #chronicallyill #chronicallyillblogger #chronicillnessblogger #chronicillnesswarrior #chronicpainwarrior #chronicillnesslife #spooniecommunity #invisibleillness #neurologicaldisorder #neisvoid #wherethetiredgirlsare #imfine #howareyou #fineisnotfine #FND #functionalneurologicaldisorder https://www.instagram.com/p/CiDjbrSL8Ex/?igshid=NGJjMDIxMWI=

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I love nothing more in the summer months than to grab a book and head outside to sit in the garden and get lost in some other world, experiencing a different life. Books gives us a window to other worlds, other experiences, and different viewpoints. Books can bring so much joy and connection as we enter into lively debates about it’s characters, or the themes that drew our attention. All of which I loved about the brilliant #TheReadingList by @saranishaadamsbooks. The book was a joyous celebration of the power that books can have, the therapeutic power they have to help us in our darkest moment and how they connect us to people we might never have otherwise. I especially love the idea of compiling my very own ‘reading list’ of those books that I have loved over the years, the ones I love revisiting, delving into its pages and feeling like I’m seeing old friends again. And those books that have had some emotional impact on me, or taught me an important lesson about life. But, if you has to compile your own list, what books would you include? I’m still in deep thought about my own! I know that #LittleWomen would definitely make my list as it’s a book that I have loved since I was a I young girl, seeing a little of Jo myself as a fellow bookworm and a love of writing! #books #bookstagram #bookshelf #reading #literature #bookworm #bookrecommendations #booklover #reading #read #readinglist #readingaddict #readingbooks #booknerd #bookaddict #booklove #bookhoarder https://www.instagram.com/p/ChFGGdND_31/?igshid=NGJjMDIxMWI=

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"How are you?" A question, or some variation, is one we hear daily - from family, friends, neighbours, or even a stranger we happen to meet. When living with a #chronicillness, it can sometimes be hard to know how to answer this simple, benign question. Because we never feel fine, every day, we experience severe, debilitating symptoms that make us feel sick, weak, or sometimes even at death's door! But we feel that we cannot tell the truth - we don't want to be a burden, or we have no idea where to begin to try and explain our sometimes complex health conditions, or sometimes it just feels more manageable than having to explain what we are going through and how it makes us feel. So despite feeling anything but, our usual response is, "I'm fine, thanks, and how are you?" #spoonie #spoonielife #chronicillness #chronicpain #chroniclife #chronicallyill #chronicallyillblogger #chronicillnessblogger #chronicillnesswarrior #chronicpainwarrior #chronicillnesslife #spooniecommunity #invisibleillness #neurologicaldisorder #neisvoid #wherethetiredgirlsare #fnd #functionalneurologicaldisorder #howareyou #imfine #fineisnotfine https://www.instagram.com/p/Cg-B9P6rWAF/?igshid=NGJjMDIxMWI=

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I'm Fine: A Lie Illness Makes Me Tell

"But it's also an extremely misleading answer, if not an outright lie. Because I am never fine, I never feel fine; my chronic illness's symptoms ensure that. Therefore, I'm fine is a lie that chronic illness makes me tell."

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I’ve always loved the quote, "The greater the storm, the brighter the rainbow." And living with #chronicillness for so long now, there really have so many storms to conquer especially when it has all become too much. It can often be so difficult to see the positives, and all the good in your life when you are constantly at war with your body and mind as you battle debilitating and horrible symptoms. But when you do have good moments, or do and experience something positive, it makes that rainbow 🌈 a little brighter, and more beautiful. When I am in the midst of a storm, I need to remember to hold on for the rainbow to appear after it has wreaked its havoc. Now, I have a little charm to remind me - a new one for my ‘positivity’ bracelet, which has all charms with positive, uplifting quotes engraved on them, or inspired by my favourite sayings! #spoonie #chronicallyill #chronicallyillwarrior #chronicillnesswarrior #chronicpain #chronicpainwarrior #chronicallyillblogger #chronicillnessblogger #neisvoid #wherethetiredgirlsare #spoonielife #chronicillnessawareness #chroniclife #FND #FunctionalNeurologicalDisorder https://www.instagram.com/p/CgHX6PAsQGJ/?igshid=NGJjMDIxMWI=