List of the most popular hashtags for theme #CHRONICCONDITION

#fordayswhenyoudonthavetheenergytosayit Due to symptoms it can be hard to keep on top of letting everyone know there’s no change or you’ve had a bad time of it lately. I’m having quite an okay time lately after the hell of the last few months but, this came about as a kind of sarky reply to a comment I’ve heard often when I had to take a break from things the whole “ooh I thought you’d disappeared ha ha” thing. Truth is nope, we don’t disappear we go into the difficult place where managing illness and life is the only focus so you can make it through the day. No disappearing acts or choosing not to turn up or take part, it’s called survival mode and without it we’d never again have the energy to show up at any time. Never feel ashamed or wrong for taking time out to recover, rest and get yourself back to a point of your normal, because I always find too those people who make such passing comments are never the ones to check up on your wellbeing or show concern anyway, rather they’d just make a dig about it because it’s just a complete lack of understanding what you go through and they often have very little interest in actually finding out. It’s okay to put your needs first.

So yesterday didn’t go as planned... a day late but it’s never a wrong day to talk about gratitude really! As someone who has a daily gratitude practice I wanted to make this post about stripping it back to basics. Often we are so caught up in surviving and getting through each day it can be easy to miss the chance to be grateful for the very basic things we have access to and taking them for granted. That’s not a dig or saying oh how bad of you, no no, it’s about saying we all do it, me included! I mean how many times do we struggle to take a shower because it’s so draining and the focus is on getting it done (and there’s nothing wrong with celebrating when you do!) yet, how often are we simply grateful we can just switch a shower on and have clean fresh running water to shower in when we are able. Or how many times do we flush the toilet and be grateful we have the plumbing and structures in place to be able to do this without thinking. Another is having a well lit house. We don’t think much about switching on a light anymore until we can’t. The list is quite endless once we get started. The point of this post today is to think about gratitude of course, but also express gratitude for all the little things that pass us by that if they were to not be there or stop functions would make our lives ten tones more difficult. I have added a few personal ones here so totally appreciate if not everything resonates with you! Our blessing and gratitude are personal to each and everyone of us, but this post is here to remind you even on the worst of worst days we still have so much to be grateful for if we take a minute to look at our daily life I’ve added a gratitude story template (which now makes sense ) for you to fill it with gifs/emojis/words that can be used anytime you like to express your gratitude! Simply screenshot and go, feel free to tag me, it would be great to create a gratitude train! Because the best thing about it is it can’t ever be used up, the more gratitude we put out there the more we create and encourage others too!

Double tap if you have ever felt like saying this! Link in bio to connect with other #spoonies http://bit.ly/2VuHPEa . . . #InvisibleIllness #breastcancer #multiplesclerosis #crohnsandcolitis #lupus #copd #rheumatoidarthritis #fibromyalgia #epilepsy #endometriosis #parkinsonsdisease #hemophilia #foodallergies #chronicpain #depression #PCOS #IBS #migraine #heartdisease #pulmonaryhypertension #spondylitis #hyperhidrosis #osteoporosis #myeloma #leukemia #lymphoma #HidradenitisSuppurativa #ChronicCondition #myhealthteams

I'm sorry what were you saying? If you have a #ChronicIllness you know too well how #BrainFog can make seemingly easy tasks seem impossible. Learn how to beat brain fog and meet others who understand what you go through using link in bio. http://bit.ly/2VuHPEa . . . #chronicillnesseswarrior #chronicillnesssupport #chronicillnessfighter #chronicdisease #chronicillnessawareness #chronicwarrior #chronicallyill #chronicallysick #chronicillnesslife #chroniccondition #chronicconditions #chronicfatigue #spoonie #spoonies #spoonielife #spooniewarrior #spoontheory #invisibleillness #invisibleillnesses #invisibledisease #invisiblediseases #invisibledisability #morethanjusttired #fatigue #butyoudontlooksick #dontgiveup #myhealthteams

:: Invisible Illness :: _ Does this look like someone living with a chronic condition to you? Nope, right? That's endometriosis. It's invisible. Invasive. Inexplainable. And often infuriating. _ "Well she looks fine to me!" Or "You were fine just a minute ago" Or "Ah it's just a normal part of being a woman" Or "It's all in your head" >>> Statements many of us endo girls will be all too familiar with. _ When you live with an invisible illness you can spend a lot of time faking looking well and trying your best just to get on with things. However, when it all gets too much (and it does) when it come as quick as a flash of lightening (and it does) when you reach a time you’re so exhausted you can’t hide it anymore (and it does) this can be mistaken for faking being sick. _ There's no truer place this unfolds than in the workplace. The pain can be debilitating. The list of symptoms exhausting. And yet all invisible to the naked eye so colleagues and employers have a hard time relating to or empathising with a condition like endometriosis, or in fact any condition they can’t see. _ I worked in digital for 7 years. Across that time I missed out on promotions, was made to feel like the weakest link and constantly felt guilty for not working late. I wished I could have literally shown my teams the tiniest part of the pain, sickness and fatigue I experienced on a daily basis. Many amazing artists have captured the pain of endo in the form of bruises, cuts and wounds. That would have been so much easier for people to understand. _ Endometriosis is truly misunderstood in the workplace. It’s the biggest reason for starting my PhD next year researching women’s true lived experience at work. _ Thank you to so many of you who have already shared interest in supporting this project. I’m going to need and would love as many of you to get involved as possible. I’ll be updating everyone with info when it’s time. _ So here’s to ensuring Endometriosis and Employment isn’t a contradiction in terms for the future ✨

One of the best things to have come out of creating this account is the ability to connect with people who don’t have my illness. This may sound odd as usually I’m posting saying how lovely it is to have community and people who get it. That is absolutely true however, when trying to raise awareness from the confines of your bed/house getting the message out about what people with ME/CFS or any other chronic illness go through seems near impossible especially when you consider the Drs don’t even know half the time. This account has opened up many conversations from people globally who have had no idea what ME/CFS is. I’ve had some lovely messages and chats with people who know someone who has had it or care for people with it. I sometimes find people feel awkward asking me about it or step around it politely not wanting to offend. Now I know there are many opinions out there regarding conversations about illness but this is my personal take on it. You may not agree with it, you might agree I honestly don’t know how each individual follower feels, it’s Impossible too but this is my message. Please never be shy to ask about my illness and how it affects me. Just because you don’t know about it doesn’t automatically make you a bad or wrong person. No! There’s lot of things here I’m learning about from you lot! We don’t learn until we read/discuss and understand. That’s the only way. Please don’t feel bad if you’ve never heard of it because the chances are I wouldn’t have if I didn’t have it. Awareness is about respect on both sides, you respect my experiences of it and I respect your questions. I have had some lovely conversations with people about this illness even though sometimes it’s been extremely emotional and difficult to discuss but often they create the best connections & understanding. That said, it can’t be ignored that there are people who have no interest in knowing or understanding about you & your illness and that’s fine, just leave them be. It’s not your job to change them. Focus your energy carefully. We can all only do our best. We are all human, we all have our own problems and we all make mistakes. It’s about doing our best where we can.

Living with any kind of condition is hard but it's even harder when you have to deal with judgemental people who simply don't understand what you are going through. To all my fellow warriors, you are amazing. ______________________________ Be kind to yourself ______________________________ . #psoriasis #livingwithpsoriasis #longtermcondition #chroniccondition #psoriaticarthritis #arthritisawareness #arthritiswarrior #psoriasiswarrior #psoriasiscommunity #psoriasissupport #migraine #fatigue #curearthritis #pcos

Just some truths I’ve encountered on this journey... sometimes when I write/draw things I do sit back and wonder am I the only one thinking this and should I really post this Your responses to stories and posts lately have convinced me to keep posting. This again fits in line with an experience I had with a so called “friend” yesterday. The expectation to not be ill anymore is too big or your illness is nothing because they have a job and a life to live. Let me point out I’m not talking about those general life conversations, but the ones that are created by them for a “who has it worse” match or to make out your life is a breeze compared to theirs as it’s just so busy. They think you chose this life, that living without big improvement is a choice, but the reality is when you have your health your choices are your own, if you’re not happy with your own life change it completely, you are your only obstacle. While I believe and acknowledge even when you have an illness you to are responsible for your happiness, there are still things that must be sacrificed and you have no say in because it ultimately comes down to your health whether or not you can physically do something about it. There are huge differences between choices made and forced circumstances you’re learning to handle. For me, I’ve learned that when you encounter this, no matter how long you’ve known a person it rarely ever changes. It’s time to say no thank you I don’t need that added to the burden, I’m responsible for my life and you are yours. It’s time to move on, because for every person who does this there will be a dozen more who don’t. People who even if they have health still give respectful, mutual grown up conversations about the difficulties life has for everyone without competing or belittling. Sorry it’s a long one, but I just feel it needs to be said. Rant over ☺️

CLC MEMBER FEATURE: Hello, I’m Brianna and I’m 18 years old. In June 2015 I was an active 15 year old girl with no cares in the world. One month later I was diagnosed with a type of congenital heart disease, called dilated cardiomyopathy. Later that same night I went into cardiac arrest. • Everything went black, and two weeks later I woke up with a seven inch scar down my chest and a machine doing most of my heart’s work. It wasn’t until then that I realized how serious my condition was. By the time of diagnosis, I was in the end stages of heart failure and needed a transplant to survive. • After two months of having my LVAD and being listed Status 1A for Transplant, I received my gift of life on September 19, 2015. Today I have had my heart for over two years and it is still functioning well with no heart rejection. • That’s not to say life post-transplant has been perfect. In May of 2016 I was diagnosed with PTLD (Post Transplant Lymphoproliferative Disorder), a rare type of lymphoma that only transplant patients can get. Since then I’ve had a tonsillectomy, an appendectomy, a bowel resection, and I’ve fought through stage two heart rejection. Despite these complications, I can say with complete certainty that my new heart has given me more fun and adventure than ever before. • My hope is that one day no child will be born with a CHD. Until then, I’m going to put as much effort as I can into spreading awareness. To anyone going through a tough time, I know it can be hard, but don’t give up hope! If anyone feels like chatting feel free to message me and I’ll do my best to respond ASAP. #ChronicLoveClub