#International CFS/ME Awareness Day | Explore Tumblr Posts and Blogs

sylvies-chen · 2 years

Text

ok it’s been days and though this is not the most aggravating thing about 11x03 of CF (which honestly, INSANELY, says a lot about how awful this episode was) it’s still worth being discussed so here is my hot take of an essay on why Sylvie’s monologue in this episode was absolute bullshit writing.

putting everything under the cut as always, just to clean up your dashboards. I hope you’re ready for some intellectually vocalized anger :))))

So listen. I get it. The “this job, this life… it forges you in steel” line is really cool. It’s a pretty fucking badass line, everyone can see that. But thematically, Sylvie’s monologue of an explanation for why she’s truly— no seriously— okay with her breakup with Matt is not only extremely out of character for her, but also brings up an issue I have had with the way the writers room, and One Chicago in general, writes female characters.

Sylvie uses the anecdote of the female stabbing victim who died by her side in season 6 to explain to Violet why the breakup isn’t affecting her as openly as expected. She says that when it happened, she cried in her car for days because she had a hard time dealing with it, but now she’s stronger than that. That statement in and of itself is completely antithetical to Sylvie Brett as a character. (And boy if you could see the utter fury with which I say that out loud.)

The story is fine, if she hadn’t already used it four seasons ago as a reason why Matt should seek help and open up about his feelings as opposed to pushing everyone out and internalizing it. That behaviour is what she condemned in season 7, because she regretted not having opened up and let others in to see that emotion. Now, in season 11, she all but embraces it. What she once used as a story to promote healthy emotional vulnerability is now being used to help her push her feelings down even further.

Which brings me to my larger thesis on the Chicago Fire writers: that these writers have no clue how to break free from their own unhealthy masculine ideas of strength to be able to write what real strength is. Because to me, claiming that Sylvie (in season 6) crying in her car was weak sends the message that crying itself is not a strong thing to do. That she somehow needed thicker skin.

I am well aware of the horrid nature of being a first responder. I know a thick skin is needed. But that still does not completely negate the sometimes therapeutic and healing value of having a good cry. Letting your emotions come out in whatever form they take in a moment, that is always a healthy thing. If you let an emotion exist as it is in a moment, whether it be crying or screaming into an open field or just straight taking a nap, it becomes easier to let it go. You’ve sat with the feeling, you know what it is and you’ve let yourself feel it wholly, and now you’re picking yourself up and trying to be happy again. You are not supposed to let a feeling consume you or make you scared, but you also aren’t suppoed to completely numb yourself to a feeling. There is a balance to be had.

So now you have Sylvie, saying she’s stronger than a version of herself who would cry when she felt sad (because wow, how terrifying would that have been). An extremely important relationship for her has ended— one she thought was it for her, the happy ending, the last relationship she thought she’d ever need— and she is refusing to shed a single tear. That is really disheartening, because women are often berated for being emotional and vulnerable, and now this development in Sylvie only enforces the idea that being an emotional, feeling, crying human being is somehow a sign of weakness. An error. A flaw. It is none of these things. Crying in healthy doses and being affected in moderation by the work you do and the things you experience is not only normal, but in itself a strong thing to do. Make no mistake: it is extremely brave to let yourself feel strong, raw emotions.

This is the same problem I had with Gabby Dawson. Now I promise with all my heart this is not “shit on Gabby Dawson” hour. I’m not trashing her character, I’m just pointing out something that bothered me with the way she was written. We are introduced to her in season 1 and immediately she is established as a total badass. She’s one of the boys, basically: she can match their speed and strength, she’s tough, cool, doesn’t take their digs personally, responds to things with anger first before sadness, doesn’t like relying on anyone. And as much as I loved that, I find that sometimes the writers overdid it wayyyyyy too much. Whether you like it or not, Gabby Dawson exemplified every trait of toxic masculinity: disregard for the rules and for authority being seen as badass, rarely cried when handling tough calls, an acute aversion to depending on anyone or anything. She was rewarded for it. She was the strong female character only because she was like the men.

Men have an idea in their heads of what it means to be strong, or to be a man, which almost always involves some sort of concealing of emotions. No crying, no honesty, no vulnerability with people you are close to. Just bear it all “like a real man would.” Stoicism is worshipped, placed on a pedestal and regarded as the ultimate show of strength. It is bullshit, and it bothers me when women show strength and emotion simultaneously and are then punished for it. It bothers me when men try and impose these very ideas onto women as well. Why should Sylvie Brett be seen as any weaker than the rest of her coworkers for letting herself feel sad and cry when she needed to cry? Why should a woman like her be seen as in need of some toughening up if she can cry that hard in her car and still go to work the next day with her head completely in the game? Why is what we consider femininity constantly mocked and undermined and seen as incompatible with strength?

Women? We are strong in our own ways. Our emotional openness is a pièce de résistance in today’s patriarchal society. We know it is a mark of strength. That is a fact.

Sylvie Brett has always been strong. She has been as strong when crying in Matt’s arms or embracing “femininity” by bringing flowers into the firehouse as she has been when she’s had a gun held to her head. This is non-negotiable, and the writers can never take that from me.

#I don’t know if this got too off topic but I hope you found it interesting #FUCK derek haas. FUCK dick wolf. FUCK the writers room.#chicago fire #sylvie brett #brettsey

63 notes · View notes

farcillesbian · 2 months

Text

wanted to share my experience with local activists today because it was really like. heartening

for context, I live in a pretty small town (like 6000 people, and many of those are just here for university). it's somewhat rural, and over 200 km/a 2 hour drive from an actual decent sized city.

a local anglican priest organized a Pilgrimage4Gaza event today and again next weekend, as a way to express solidarity with the Palestinian people and to meditate on just a fraction of what Palestinians have been experiencing. it's an international movement (with more information here), and I believe part of the intent is to be part of the way Christians around the world can use the Lent season to engage in activism and raise awareness for the Palestinian cause. not all the people in the walk I was at were Christian, myself included, though it was kicked off with the reading of some prayers centered around Palestine and we spent a minute listening to the lord's prayer in arabic as well. that was about the extent of the Christian specific experience during the walk though!

the goal is to walk the distance from Gaza to Rafah, 36 km (22.4 miles) in total, to put into perspective how far that is to go on foot while fleeing for your life, but also to map that distance onto our own cities and realize how small of an area 2 million displaced people have been forced into. the pilgrimage organized in my town has been split into 2 days, today and next Saturday, 18 km (11.1 miles) each day so as to allow the greatest number of people to participate in at least some of it.

today we spent 4 hours covering those 18 km. we walked over 23,000 steps, representing approximately one step for every Palestinian life that has been brutally taken by Israel since October 7th 2023. there were 22 of us at the start and almost all of us completed the first 9 km loop. many participants were older people with some mobility limitations, but they still came out. one participant I talked to was telling me about how she's doing as much as she can despite dealing with either long COVID or ME/CFS. there were people who were driving alongside us so that anyone who needed to stop walking would be able to step into a car, and they also kept extra water on hand. these measures were taken to keep the activism as accessible as possible. we also reflected on the knowledge that people who walked this distance in Gaza did not have these resources, not even clean water access along the way.

some people finished their walk after the first loop, but about 10 of us kept going to complete the second loop. we also were able to stop by the rally being held in front of town hall, where another 20 or so people were chanting and holding signs and flags - a great alternative for those who were unable to participate in the walking today. there were some children (around 9-10 years old it seemed) leading chants with the megaphone.

throughout the walk, people honked to show support, they nodded and waved and gave a thumbs up. some people on the streets stopped to acknowledge what we were doing. cars full of young university students rolled their windows down and chanted in support of Palestine!

even in small places like my town, there are people working hard to make sure that others are still noticing, thinking about, and talking about Palestine. even if for just the moment they passed us on the street, they could not forget about Palestine. we will not let them forget about all the martyred people.

#petchyposting

6 notes · View notes

tocautiouslygo · 1 year

Text

Because of the internet ME/CFS connection we can have conversations, push back the dark all-encompassing silence. We can look for answers and theories and share our experiences with others, who in turn share their experiences with us.

I think sometimes about what our fragile lives with ME/CFS would be like without the internet and it makes my blood run cold. So many of our members would be alone. Even some living with their families cannot be around other people for long, and they live in their bedrooms.

#mecfs #me awareness day #my posts #disabilityposting #not trek

7 notes · View notes

bougiebutchbitch · 1 year

Note

I don't know alot about eds but I appreciate you talking about it so openly. Sorry if this is rude I have rheumatoid arthritis which I think is something a little similar and am very intereseted in all of these things. Dislocations do not sound like a good time

Neither does rheumatoid! You have my condolences <3

And haha yeaaaaah I'm just yelling a lot because I'm (relatively) freshly diagnosed and like. I finally have an answer for ALL THE SHIT that's been wrong with me for my entire life! It's genuinely a big relief.

But if you wanna know something interesting... the dislocations & subluxations suck. But they don't bother me nearly as much as the other stuff!

Like, don't get me wrong. It's annoying & painful when joints lock up and need to be popped back in, and it's especially annoying in that I really struggle with a lot with say... cleaning, or writing with a pen, (or drawing, more and more.... :c) because my fingers and thumbs pop in and out and twist at the slightest application of pressure. But that doesn't have nearly as much day-to-day affect on my life as all the hEDS-adjacent issues - i.e., falling over and fainting a lot, gastrointestinal issues, swallowing difficulties, internal bits falling out, overreactive MAST cells, the constant draining joint pain and fatigue and frequent migraines... like anyone who has CFS is a fucking TROOPER, I could not live with any greater level of fatigue lmao

I think a lot of hEDS folks find that. The dislocations and subluxations are the most obvious issue, and what everyone knows about. But the other issues often fuck up your day-to-day life just as much, if not more!

I'd love to know more about rheumatoid arthritis, too! I'm only vaguely aware of it as an autoimmune disease that can cause some pretty serious damage to hands and feet??? But I'm sure there's a lot more to it! If you ever wanna yell, feel free to, because I'm super interested in all connective tissue disorders too xxx

8 notes · View notes

wisteria-lodge · 2 years

Text

badger primary + lion secondary (badger model) (snake model)

Hi! Thank you for all the awesome content on your blog!! I’m super stuck on my sorting (primaries and secondaries) and thought you might be able to help?? I pretty quickly ruled out Bird - while I can understand building your morality system from logic, it doesn’t feel right, and I know I’m much more people and instinct based. I love reading, but very much for stories, not often knowledge for knowledge sake.

A fiction vs nonfiction preference doesn’t really give me a clue to your primary. (Actually, the way you phrased this is mostly making think that you’re not a *bird* secondary, who can attach a lot of important to “knowledge for the sake of knowledge.”)

Likewise for secondaries, I’m not a big fan of pre planning - it often bores me, and I struggle to do preparation for work tasks. I find I often simply don’t stick to plans I set for myself without outside accountability, so they feel a bit pointless (cf revision plans as a kid). I do like planning for say, a holiday itinerary, but I also like to keep lots of space for flexibility, and tend through life to enjoy spontaneity and surprising myself.

So far, I’m really thinking an in-the-moment secondary for you (Lion or Snake) … and I’m kinda leaning snake. That bouncing-of-things-for-fun while in a new place feels snake.

So! Not Bird, I don’t think.

Agreed.

A lot of pointers seem to indicate Badger. I like being part of communities - whether that be my sports team, the experience living in a town where my friends were all close to hand,

ooooh I think you may be a Badger primary.

or just day to day chatting to someone new in the street and being like - hi, fellow person!

Whatever secondary you have, you’re going to be the most social version.

I love the fact that fan communities exist, I enjoy the idea of people banding together around something they love, it all feels quite me. I really admire people who create something that others can share in.

Badger primary.

I also am quite people focused in how I approach problems - if I’m struggling with something, I avoid it a little (although I’m aware that’s not good)

Hmmm. I mean avoidance is just it’s own thing, but Lions do have a tendency to just ignore the problem… maybe…?

but then my first approach will often be to reach out to the people I care about and get their insights on the problem. It doesn’t mean I’ll act as they say, but it’s often my first port of call to seek out their advice and talk a problem through.

This is a Lion or a Snake with a Badger secondary model. The more improvisational secondaries sometimes get stuck, because what they really like is *responding* to things. So, you do the Badger secondary thing, and get some input from the people around you… but are not especially swayed by what they have to say. That’s not badger, that’s using Badger to get some fuel to get that Lion or Snake secondary (both famously stubborn in their own ways) going.

Likewise I do want everyone to like me (I know I know),

The “I want everyone to like me thing,” is just a person thing (which you know is impossible/unhealthy/all that jazz.) But it does hit Badger primaries especially hard.

and will slightly shape myself to achieve that - but I do not enjoy doing this, however necessary it sometimes feels in order to make sure I’m liked.

Basically this is telling me that you have a model (probably a Badger model) that you don’t really like. Underneath the Badger model could theoretically be anything (even an actual Badger secondary.) But in your case I’m thinking it’s probably Lion. I haven’t seen any evidence of a prep-work secondary so far, and I’m guessing that if you were a Snake secondary, then you’d probably have an easier time just using People-Pleasing Snake.

I’m also better at external accountability than internal

What an interesting thing to say.

- if I’m doing something for someone else, I’ll get it done, if for myself, ehhhh maybe.

That is the way of the Badger. Both primary and secondary, honestly.

I’m also quite envious of a (badger) friend of mine who has a group of friends that organise a bunch of social events and have built themselves a lil hive of a community in the big city we live in.

That sounds like the Badger primary dream. Of course you want that.

I also looked after a lot of friends and a few acquaintances in sixth form / uni who were struggling, and got validation from that helper/carer role, but it sorta burned me out (burned Badger??) and I ended up drawing a line.

Badgers struggle with boundaries, it’s a thing. And what I’m hearing is…. more about that Badger secondary model. You formed it because it made you feel validated, and it made you feel like a good person and it made it easy to be liked… but then you wore it too long, and got burnt out. And seriously, being a caregiver is an exhausting thing to do.

(A Burned Badger primary is more like - it’s unsafe/stupid/impossible to care about the whole community, so I’m going to pick a handful of people to be my new community. You also tend to get a lot of dehumanization with Burnt Badgers, ‘I don’t HAVE to care about them, they don’t count for xyz reasons.’)

But what’s not that burned is

Yeah, you know this.

I felt way happier after I did this - the year after was one of my favourites ever - and better because I wasn’t carrying a lot of other people’s burdens. And ever since I’ve done this a lot less - I’ll of course talk through and support close friends if struggling, but I don’t do seek out doing so for people outside that, and that feels like the right thing for me. So could be burned? But if so I think it’s good it burned because that wasn’t very sustainable? So I’m not sure.

Absolutely not burnt. You were actively going and finding people to problems to help (when you didn’t have the bandwidth yourself?) Sounds like coping mechanism to me. One that you ended up not needing anymore, so good for you.

However, what makes Badger hard is I know three pretty clear badgers in my life (my mum and two close friends) and there’s some areas fundamental to it that I don’t seem to have: (a) abiding by rules, (b) believing rules matter in of themselves © an unwillingness to cut corners, belief in the proper method to do something

Okay, that’s Badger secondary. You’re not Badger secondary. You might model it (or heck even perform it) but that absolutely is not you.

trusting in authority

Hmm. I wouldn’t call this a specifically Badger thing. It can be - Immature Badgers will often turn themselves into photocopies of authority figures. But, over the course of these write ups, I’ve noticed that the people who struggle the most with whether or not to trust authority are actually Idealists. Especially Burnt Lions or Burnt/Exploded Birds.

and sorta general belief in the best in everyone and general politeness - this last one sounds a little odd, but both of my friends will keep talking to guys/strangers even after they show what I see as red flags, whilst if I get a bad instinct about someone, I’m outta there. That’s not from horrible prior experience, I just trust my instincts I guess, and I don’t put politeness above that.

More Badger secondary stuff. That sort of general polite, unthreatening niceness is a classic Badger secondary tool, and it can absolutely get you out of sticky situations - mostly by making sure no one gets angry/unpredictable. But it’s not the Lion secondary way.

Likewise with rule following, I don’t really believe in rules innately. I’m nervous I’ll get caught if I break the rules, but I don’t feel like it’s bad in of itself. This is however, partly shaped by a family dynamic which apart from my mum that is pretty Snake.

It is absolutely true that young (or immature) Badger secondary usually get really intense about following all the rules. But there are just bad rules out there, that’s not even controversial or wild to say. Thinking about if rules are good or bad (helpful or harmful, useful are not useful) is just a good skill to have.

And it makes sense that you learned this young if you’ve got a strong Snake secondary authority influence… but that is absolutely making me double down on Lion for you personally.

And with cutting corners, I like to work hard but only if it has purpose - if there is a quicker way of achieving something, I would take it. And I don’t work for work’s sake I don’t think (though I do sometimes feel quite guilty about that). Which does sound a bit - dare I say it - lion?

yeah…

I trust my instincts, about people and situations. I hate going against what the people in my life want, but I also hate going against my own instinct about a situation.

Badger primary vs Lion secondary fight!

(it happens. My Lion primary and badger secondary fight all the time.)

I often find it hard to tell what I think, and I have the feeling that other people’s opinions are intruding on how I feel about something, and I try to push them out my head briefly to work it out. I’ve started really enjoying going on solo holidays because it’s fun, and a relief somehow, and I feel like it’s allowed me to figure out what I actually want, rather than pre-catering for what the other person wants.

While it’s possible that there’s a Lion primary under a Badger primary model that you really quite love… I’m thinking that this is a story about a Badger primary learning to find boundaries, and learning to make time for self care… when you didn’t have access to either of those things, not too long ago.

That said though, I’m the one who seeks out my loved one��s views when I’m stuck on things so like, clearly I do seem to strongly value their opinions (?). Eh.

The little qualifiers! The ‘?’ the ‘eh.’ It’s just a model. It’s a tool that sometimes you use.

Also don’t know if relevant, but whenever I’m in big friend groups I tend to make close 1-1 relationships with a few people, and while I like the feeling of being in the wider group, my investment is very much in the couple of individuals I’m particularly close with.

I want to say that’s just how it goes for Badgers? You like the group, the group is important and nice and feels safe, but you still have your favorites.

Big fan of 1-1 friendships as a rule! Partly because we discuss things more honestly and more at depth. And also - this is bad - but 1-1 I can be closer to my actual self, and know what they want me to be, but in big groups I can’t please everyone, and I don’t like the attempt of it.

A couple things here.

It seems like you like the authenticity of one-on-on relationships, which would definitely make sense if you’re a Lion who wants to be their actual self. Trying to essentially model Courtier Badger for a big group is a lot.

But you also talk about ‘knowing who they want me to be’ and consciously changing to accommodate, which is sounding really Snake secondary again. You seem to feel a little more positively about this way of doing things than the ‘polite’ Badger thing. Knowing that you have a mom with a strong Snake secondary, I would probably say that you might even specifically modeling *her* Snake.

If I had to say to you what matters most to me it would probably be - myself and the people I care most about. If I had to hurt a stranger to help my family I would, but only if I felt that was what my family wanted.

“I would hurt a stranger if it seemed in the best interests of the group.” That’s some (very honest) Badger.

But Snake feels quite far from me because almost none of the other traits seem to track. I never see people as means to an end really - I very much see them as ends in themselves

“People are people and that matters,” is a primary thing (A Badger primary thing) while “People are a useful way to solve problems” is a secondary thing (usually a Bird or Snake secondary thing.) It’s really helpful when you’re sorting yourself (or other people) to make sure you haven’t got methods and motives muddied up.

for example my sister (very Snake) giggled at me for coming back from a first therapy session and saying “oh she’s so nice, she’s worried about her kids at school today”, aka, I find my way to make conversation two-way even in a situation like therapy!

which is normal these days? This isn’t the 1950s style where you’re just supposed to talk and the psychiatrist is silent taking notes the whole time. A LOT of people feel a LOT more comfortable if they have a relationship with their therapist. I can’t really tie any of that back to sorting.

I do enjoy being flexible and adaptable but I always forget to think enough about a situation to manipulate anyone, and end up just saying what’s actually on my mind.

… lion. Also I love the phrasing of “forget to manipulate.” Like you can, that’s a skillset you have, you mostly just… don’t.

So anyway! Please do let me know if there’s any leaning you can see. I feel like perhaps Badger primary and Lion secondary, but a not very confident lion perhaps? Or I think maybe my brain has been all twisted by other people’s moralities so I’m confused about what’s left? who knows man?? Any insight appreciated!!

You could probably stand to be a little more confident in your Lion secondary, although I think you’re a lot more confident than you’re giving yourself credit for. I think most of what you’re reading as ‘lack of confidence’ is just a bunch of models, some of which you like, and some of which you don’t.

#sortinghatchats #shc #wisteria sorts #badger lion #snake secondary model #badger secondary model #lion secondary #badger primary #sortme

15 notes · View notes

nationaldayof · 1 year

Text

Today is officially National Sapphire Segulah Day; International Me/cfs Awareness Day; International Nurses Day; National Fibromyalgia Awareness Day; National Nutty Fudge Day; National Odometer Day; National Limerick Day; National Military Spouse Appreciation Day; and National Provider Appreciation Day!

#holidays #holiday #love #today #today on tumblr #knowing #only today #today in the world #sharing things #social media themes #todays the day #in today’s news #today trending #today i learned #today is #usa today

0 notes

kelliaellis · 2 years

Text

May 12th is Coming

Each year on May 12th, we observe International Fibromyalgia Awareness Day. Globally, we also acknowledge Awareness for Chronic Immunological and Neurological Diseases (CIND), typically considered Chronic Fatigue Syndrome/ MyalgicEncephalomyelitis (CFS/ME) and Multiple Chemical Sensitivities (MCS). This does include other conditions such as Multiple Sclerosis, Addison’s Disease, Lupus, Chronic…

View On WordPress

0 notes

orthomedhospitalchennai · 1 year

Text

Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), does not have a specific designated day like Nurses Day. However, May 12th is recognized as International ME/CFS Awareness Day

Symptoms

Extreme fatigue

Post-exertional malaise (PEM)

Cognitive difficulties

Sleep disturbances

It's important to note that symptoms can vary widely among individuals with CFS, and the severity of symptoms can fluctuate over time. CFS is a complex condition, and its exact cause is still unknown. If you suspect you may have CFS, it's important to consult a healthcare professional for a proper diagnosis and guidance on managing the condition.

1 note · View note

nationaldaycalendar · 1 year

Text

View On WordPress

0 notes

myalgicencephalomyelitiscfstom · 1 year

Text

Dr Weir's 5 free Irish ME/CFS talks in Cork/Dublin/Galway/Limerick/Sligo, May 2023 The Irish ME/CFS Association is pleased to announce that it has arranged for Dr William Weir, a leading international ME/CFS expert from the UK, to give 5 ME/Chronic Fatigue Syndrome talks in Ireland in and around international ME/CFS Awareness Day, May 12 May. The talks entitled "ME/CFS: Past, Present and Future" will include questions-and-answers sessions. Each talk will be followed by a chance to chat to others over complimentary tea/coffee/herbal tea/water and biscuits.

The talks will take place in the following venues: - Dublin Wednesday May 10 2023 - 7:30 PM Clayton Hotel Dublin Airport, K67 X3H5 https://www.claytonhoteldublinairport.com/ Car parking: Complimentary for guests attending a meeting/event at the hotel Location: see here https://www.claytonhoteldublinairport.com/airport-parking/find-us/ 24-hour courtesy bus to & from the airport (useful as there are a lot of transport links to the airport) This talk is being hosted by Vera Kindlon, the Association’s chairperson. - Cork Thursday May 11 2023 - 7:30 PM The Kingsley Hotel, Victoria Cross, Cork, T12 P680. https://www.thekingsley.ie/location/ Lots of free car parking Location: see here: https://www.thekingsley.ie/location/ This talk is being hosted by Michelle Dinn, coordinator of the Cork ME/CFS Support Group, and Ashling O’Leary. - Limerick Friday May 12 2023 - midday Limerick Strand Hotel, Ennis Road, Limerick City, V94 03F2. https://www.strandhotellimerick.ie/ Car parking on site): 90 minutes complimentary parking €2.50 per hour after this Location: see here https://www.strandhotellimerick.ie/map-page/ This talk is being hosted by Sarah Warde, co-ordinator of the Limerick ME Self-Help Group. - Galway Friday, May 12 - 7:30 PM Maldron Hotel Sandy Road The Connacht Hotel, Old Dublin Road, Galway H91 K5DD (Not to be confused with the Maldron Oranmore) https://www.maldronhotelsandyroadgalway.com/ Free parking for attendees Location: https://www.maldronhotelsandyroadgalway.com/location/ Take the exit for Liosban Industrial Estate at the N6/N84 junction (some of the road marking have it written as L'ban on the lane you go into), and then a right turn into the hotel car park. This talk is being hosted by Orla Ní Chomhraí, secretary of the Irish ME/CFS Association and coordinator of the Galway ME/CFS Support Group. -Sligo Saturday, May 13 – midday Radisson Blu Hotel & Spa, Ballincar, Rosses Point Road, Sligo, F91 XW7Y https://www.radissonhotels.com/en-us/hotels/radisson-blu-sligo-spa Free parking Location: https://bit.ly/3Yr34r6 This talk is being hosted by Ruth Flood Admission: Free. We don’t take pre-bookings but we expect the rooms will be big enough to hold the numbers we expect to attend. Mask wearing is encouraged for the talk and question-and-answer session of the event. After that, when the tea/coffee/herbal tea/water and biscuits are served, many if not most people probably won’t be wearing masks (so some people may choose to leave before that). If you would like further information and/or be kept up-to-date with future events, please contact us at [email protected] or our voicemail 01-235 0965.

#myalgic encephalomyelitis #chronic fatigue syndrome #mecfs #cfs #me/cfs

2 notes · View notes

cfs-crohns-colitis-warrior · 2 years

Text

Only today found that this coming week is ME awareness week, and Thursday 12th is ME/CFS and Fibromyalgia International Awareness Day.

In spirit of this I hope to be wearing some blue whenever I leave the house this week (I have a couple cinema trips and a breakfast outing to get to!) as part of the Go Blue for ME campaign, just to try and raise some awareness when I post on social media (not linked for personal reasons). I have also ordered myself a pin badge and a couple of ME awareness t shirts I intend to wear out as soon as they arrive. If I remember I’ll post pictures of them here.

While I have Crohn’s as well (speaking of, World IBD Day is 19th May) ME/CFS is something I definitely want more people to be aware of, and more understanding of. While people can be dismissive of IBD, it’s sometimes easier for people to accept as an actual illness, even if it’s invisible, because of the the fact it clearly affects the digestive system.

I feel like ME/CFS is taken a lot less seriously which makes it a lot harder to get people to understand it as something you have. When I visit my old workplace and they ask how I am, and I mention CFS they think it’s something that will improve over time and eventually go away, and that maybe I’ll have my life back one day. Unfortunately it’s not so simple. The other problem, with CFS and fibromyalgia is that a lot of people seem to think that it’s all in your head and don’t have the correct treatment tools. To be honest, I don’t even know if I was officially diagnosed at the end of my specialist appointment, and at this point I don’t want to have to waste my energy going back for it to be made official when I know for certain it’s what I have. While it sucks to have this and IBD, I feel somewhat lucky that I already have my IBD diagnosis as this helps people understand why I’m so ill. If they can’t understand the CFS side, they just automatically assume it’s the Crohn’s and you know what? For the moment I let the believe it, because I’m too exhausted to explain it’s not that, but letting them believe it is is what gets me out of wasting more of the energy I don’t even have.

I hope others plan to help raise awareness some way, for these illnesses and others. Obviously these are just the ones I know about because I have them, and am still relatively new to other chronic illnesses as I see more posted online about them. I hope to let myself learn more. I wish I could do some proper fundraising but am unsure how at the moment and with little energy to find out, much less put things into action. I hope one day I can get things more under control to be well enough to do a bit more in raising awareness and fundraising.

Love to all suffering with any kind of chronic illness and or disability 💙💜

#chronic illness warrior #myalgic encephalomyelitis #awareness #chronic fatigue syndrome #cfs/me #crohn’s colitis #chronic illness #crohn’s disease #chronic illnesses #crohns and colitis #crohns warrior #crohnsandcolitisuk #me awareness week #world ibd day #go blue for me

1 note · View note