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'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=

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When you spend so much of your time talking, writing, and posting about #chronicillness, you are accused of that being the only thing you talk about. So why do it? Because talking about is the only way to correct misinformation about our condition, or explain why we suddenly cancel plans or cannot participate in things. Or I may use to explain the strange quirks that help me to survive the onslaught of symptoms when out in the world. But it is incorrect to say that my chronic illness is all I ever talk about - I actually do talk about other things! I love talking about books, as like most people know I always have my head stuck inside a book. I am also passionate about TV and films, and regularly talk about the latest things I have enjoyed watching, or I talk about what is happening in the world as so many of us do. Yes, chronic illness is a huge part of my story and because of that it can be hard to not talk about it, but it is not my whole story and it is not all I talk about #spoonie #spooniewarrior #spoonielife #chronicillnessblogger #chronicillnesswarrier #chronicillnessawareness #chronicpain #chronicpainwarrior #chronicallyill #chronicallyillblogger #wherethetiredgirlsare #chroniclife #neisvoid #invisibleillness #neurologicaldisorder #FND #functionalneurologicaldisorder https://www.instagram.com/p/CfcLvlwsfWc/?igshid=NGJjMDIxMWI=

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Reading has always been my favourite past time, loving nothing more than to lose myself for hours in a book. It is one that I especially love since becoming #chronicallyill as books have become a magical portal allowing me an escape from the severe, debilitating symptoms that are now my constant reality. For me, reading is not merely a hobby, or a way to past the time because there are magic and power in those printed words. They can transform me into other worlds, allow me to become the heroine, or someone who finds their happily ever after. In books, I am not incapacitated by pain, or the myriad of others symptoms that constantly overwhelm my body and spirit. #spoonie #spoonielife #chronicillness #chronicpain #bookworm #reading #spooniebookworm #books #spooniecommunity #spooniesisters #chronicillnesswarrior #chronicpainwarrior #chronicallyillblogger #chronicillnessblogger #chronicillnesslife #invisibleillness #disability #neisvoid #wherethetiredgirlsare #FND #functionalneurologicaldisorder https://www.instagram.com/p/Cfme8AXr1Gu/?igshid=NGJjMDIxMWI=

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Why I Don't Always Talk About My Chronic Life

Why I Don’t Always Talk About My Chronic Life

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Reading is definitely one of my preferred hobbies; I love getting lost within the pages of the book I currently have on the go, whiling away the hours and distracting me from the symptoms that are hounding me. One disappointment that I find with literature and the books I surround myself with is the failure to find any that reflects my life and experiences of living with chronic illness. All of which made me uncertain if, I or where I belong. This is why I absolutely loved #GetALifeChloeBrown by @taliahibbert. A chronically ill character, although not living with the same diagnosis I could relate and found myself nodding along as she dealt with the same problems and pitfalls as I have done living with #chronicpain. And best of all a chronically ill character that is not written as a tragic victim, or for #inspirationporn - and one who gets a happy ending, as happy endings can often feel like an impossible dream when constantly dealing with debilitating symptoms. Are there any other #fiction books that you have read and enjoyed that have touched upon the realities of chronic illness well? #spoonie #chronicillness #chronicpain #chroniclife #fiction #bookworm #chronicillnesswarrior #chronicpainwarrior #chronicallyill #wherethetiredgirlsare #chronicillnessawareness #chronicillnesslife https://www.instagram.com/p/Ccv0HNysOp-/?igshid=NGJjMDIxMWI=

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Although we all experience #FOMO at certain times of our lives, when living with #chronicillness, we don't fear missing out because we often are forced to face it. Instead, FOMO becomes the FEELING of missing out because, all too often, the debilitating and disabling #symptoms of living with illness force us onto the sidelines, watching instead of being able to experience or participate in the fun and frivolity. Or the feeling of missing out when not being invited or even thought of when those in our social circle organise a party or event, sometimes only finding out about it on social media. On a recent breakaway, I often missed out, seeing so many people going out enjoying walking the many different trails of the #NewForest but unable to experience it myself with my limited mobility and the tendency for my legs to give way suddenly. I felt lazy and unaccomplished, only being able to enjoy the confines of the beautiful log cabin we stayed in and the scenery just outside it. The feeling of missing out and the increasing isolation and loneliness of living with a chronic illness is a grief I don't think I could ever overcome or get used to. #spoonie #spoonielife #chronicillness #chronicpain #chronicfatigue #chroniclife #chronicillnesslife #wherethetiredgirlsare #chronicallyill #chronicallyillblogger #chronicillnessawarness #chronicillnessquotes #neurologicaldisorder #fndaware #fnd #functionalneurologicaldisorder https://www.instagram.com/p/CciQF2EKSmo/?igshid=NGJjMDIxMWI=