Список из самых популярных хештегов по теме #CFSME

This image was created in collaboration with @natashalipman Now I’m going to be completely honest here, I have no experience of using a mobility aid in public spaces. I’m not going to pretend that I do. Regardless of that though, I think I can still say I somewhat understand what it’s like to have to face change in your bodies abilities. And it’s difficult. It’s okay if you’re finding it difficult. Change can be a tricky thing to navigate and it can be confusing. And that’s just how you view it yourself, never mind how other people view it including people you know personally and the general public. The only thing I can somewhat relate to it with, in my personal experience, is my use of a shower chair. It took me weeks to finally use it for the first time and when I did I sat on it and cried for 20 minutes. I was nervous for people to see it in my bathroom, and it felt like a step backward. It felt like a visual representation of my physical decline. That must be about 2 years ago now and I can confidently say that I now have absolutely no issues with using my shower chair. I’m not ashamed of my need for it or that I’m in need of one in my early twenties. But that only came with time, and it was a rough road. I’m not trying to say it’s the same thing, or belittle anyone’s struggles here. I’m simply trying to use my own experiences, along with truly listening to other people’s, in order to become a more informed ally. Access is so important, and it shouldn’t be solely up to the people that need it to fight for it. So I’m fighting for it with you. You’re not fighting for it alone. If you’re struggling with the idea of needing a mobility aid or a different type of mobility aid - I hope you know every one of your feelings about it is valid. I truly believe that. 75/100 #The100DayProject Image description - a mustard background with white handwritten text that reads ‘it’s okay to be conflicted about needing to use a mobility aid’ Above the text are some symbols of people aiming to showcase what some different disabilities can look like. These symbols include people standing on their own unaided, using a wheelchair and using a cane.

A little illustrated gallery wall for today’s post. At some point I’d love to actually sell stuff like this but for now the idea of getting my head around printing, packaging, postage etc freaks me out. For now I doodle them instead, like the grown ass graduate I am ha 76/100 #The100DayProject Image description - an illustrated gallery wall of framed prints. They range in both positive and realistic affirmations including ‘sometimes it just sucks balls’ and ‘your best will vary and that’s okay’

. . . . . . #memes #lifememes #chronicillnesscommunity #mecfs #cfsme #cfs #fibro #fibromyalgia #chronicfatigue #chronicpain #chronicillness #chronicillnesslife #chronicillnesssupport #chronicillnessquotes #chronicillnessblogger #chronicillnesswarrior #spooniehumour #myillnessmythoughts #Invisibleillness #arthrits #autoimmunedisease #spoonie #spoonies #spooniesupport #pots

It's one of those "I need fresh air but I'm too potsie to get dressed and go outside" kinda mornings. Sitting in weird places is my thing now! I'm feeling really stuffy and claustrophobic this morning and I'm cold but boiling at the same time... So dressing gown and windows open while I listen to the rain and the birds singing is soothing my soul and balancing my body temp a little bit. ️ . Still going to have to go out though, 'cause I've just realised I'm completely out of electrolytes and giant bottles of water and anyone with pots will know that's a pretty apocalyptic situation to be in! ‍♀️ . . . . . . . . . . . #dizzyblonde #memyselfandi #chronicillness #iloveme #iamloved #invisibleillness #brainfog #cfsme #mecfs #myalgicencephalomyelitis #pots #spoonielife #canyouseeMEnow #millionsmissing #strongwoman #goodday #badday #gratitudejournal #brainfog #mindfulnessmatters #chronicfatiguesyndrome #potssyndrome #spoonieproblems #tiredgirl #eds #chronicpainwarrior #chiarimalformation #chronicillnessawareness

Just going to leave this right here ##truthinmemes ##spoonietruths ___________________ ##butyoudontlooksick ##fibromyalgia ##chronicfatigue ##chronicfatiguesyndrome ##myalgicencephalomyelitis ##fms ##cfsme ##mecfs ##understandus ##millionsmissing ##canyouseeMEnow ##fibrowarrior ##fibrofighter ##mecfsfighter ##spoonie ##spoonietruth ##invisibleillness ##chonicillness ##chronicallyill ##theillest ##fibromyalgiaawareness ##fibromyalgiaisreal ##thatfibromama

I even feel like Venus would be more habitable than my body ‍♀️☠️ . . . . . . . . . . #qotd #chronicillnesscommunity #mecfs #cfsme #cfs #fibro #fibromyalgia #chronicfatigue #chronicpain #chronicillness #chronicillnesslife #chronicillnesssupport #chronicillnessquotes #chronicillnessblogger #chronicillnesswarrior #spooniehumour #butyoudontlooksick #Invisibleillness #arthrits #autoimmunedisease #spoonie #spoonies #spooniesupport #pots

I do not know what life is like as a twenty something year old outside these four walls I call my home. It’s so so surreal, especially when I write it down or say it out loud to other people, but the thing is I don’t know any different. When I first became housebound I remember I was always counting the days. “It’s been X days since I left the house, it’s now been Y days…” But I realised the counting this year has stopped. I don’t know why, maybe it’s because it has been so long now it hurts a little bit to think about it too much. Or maybe I’m just so focused on keeping my hope and trust alive that these housebound days will very soon be over that I don’t like to dwell on it. The thing is when it comes to “time” we often measure it wrong. If I got offered the chance to give three years of my life in exchange for a lifetime’s worth of knowledge, growth, wisdom, and happiness, I would take it. This is how I am starting to view my time being housebound: a few years of solitude and simplicity in exchange for the rest of my life to then be deep and meaningful. I know how lucky I am to have gained the kind of insight I have at such a young age. Most people don’t experience this kind of shift in perspective until much, much later in life, and so to have this chance and opportunity to learn all these lessons so young really is a gift. I truly am grateful for these years and I wouldn’t give them back even if I could. I know in the future I won’t look back on this period of time with sadness, but with an understanding that I wouldn’t be the person I am today if I hadn’t gone through all this first. ❤️

This image was created in collaboration with @natashalipman I’ve put up a new blog post today all about my personal experience with our (failing) benefits system here in the UK. I’m sick of how the disabled are treated in this country and today I’m sharing my story with it. In the post I’ve given some background on my experience, and in order to do so I’ve spent today going through all my past paperwork on it. My brain is absolutely fried. Brain fog problems. I’ve also discussed where I feel like the issues come from, and the public perception of what disability looks like. I’ve touched on the issue of ‘weeding out fakers’ and how this concept is hurting the disabled day after day. I’ve laid myself bare in this blogpost and shared some very personal details. I’ve done so in the hopes of raising awareness, and hopefully helping to spark change. I’ve put some links at the bottom of the post where you yourself might be able to help if you’re a UK citizen. Regardless of where you live please consider reading the post. I’ve tried really hard on it, and am now going to reward myself with a nap I think. Balance. 69/100 #The100DayProject Image description - a pink background with navy handwritten text that reads ‘I’m ill not lazy’

The truest story So the strangest thing happened. I was at reception after seeing my consultant, making my next appt for 6 months time (for this particular one) & the receptionist gave me a date in December, which genuinely shocked me. That it will be December in 6 months. It took me a little while to work out why. You see, I know it’s June, like in my brain, but in my body I haven’t started living this year (never mind the others), so to me 6 months time is maybe August-inside. Because I haven’t started to live, I haven’t lived the time, I’ve existed as the time has passed. So there’s this strange disconnect. I know that with extreme fatigue & cognitive function/brain fog we already feel this sense of disconnection from others, the ‘real’ world and so on, but I guess I hadn’t factored in this passing of time. I had in the sense of we’re forced to stand (less of the standing tho ) still while everyone around us move on with their lives, but not this kind of disconnection. The ironic thing, I saw this consultant at a consulting room at a campus for ‘Ageing & Vitality’... well I’m certainly not living with vitality and I’m ageing without living that’s for sure!!! (It was also a site for biomedical research, but so random). . . . . . . #DontForgetAboutME #chronicillnesscommunity #meawareness #mecfs #cfsme #cfs #fibro #fibromyalgia #chronicfatigue #chronicpain #chronicillness #chronicillnesslife #chronicillnesssupport #chronicillnessquotes #chronicillnessblogger #chronicillnesswarrior #spooniehumour #butyoudontlooksick #Invisibleillness #autoimmunedisease #missingbutnolongersilent #spoonie #spoonies #spooniesupport