#gym exercises for ME/CFS

[compassionmattersmost]

6: Gentle Movement and Stretching in the Gym: Reconnecting with Your Body

Now that you’ve taken the significant step of entering the gym without the pressure to exercise, you might feel ready to begin exploring gentle movement. For people living with Post-Viral ME/CFS, this phase requires a delicate balance—respecting your energy levels while slowly reconnecting with your body through light movement and stretching. In this blog post, we’ll look at how to introduce…

[she-is-ovarit]

It's been over 10 years, but one of the most motivational things I have heard was during high school. My friend had mentioned he just began working out. I said something along the lines of, "I always think about working out but it takes awhile for anything to actually happen."

And he very simply responded with, "Why? I feel it physically right now and it's been three days."

I don't know why that was so perspective-shifting to me but I think of him whenever I'm done working out now.

It's because of that small exchange that on days where I severely lack motivation or am edging into or just out of a CFS/ME episode I still just show up at the gym just to physically be in that space even if I don't exercise. I feel the effect of just existing in that space in gym clothes and continuing the routine of being present there. I stay 5 minutes and listen to a song or part of a podcast and leave. Sometimes I just stretch and leave. Sometimes, if it's just an unmotivating day and I am not in a PEM episode and am physiologically able to exercise, it becomes me getting hyped and I surprise myself by being there for 45 minutes.

The goal for me is often to just be present. Sometimes I meet it. Sometimes I'm not physically able to achieve that goal and the goal becomes respecting my physical limits. I might not be able to get out of bed to even change clothes. That is part of the process, there is a limit that I don't exceed. I take it easy. Other times I exceed the goal of just showing up and do more. All because my way too honest autistic buddy in high school challenged my thinking by pointing out you can feel the effects and influences immediately, and I applied that not just to exercise itself but the process that supports it to occur either right then or in the future.

[symphorine]

man doctors sure love to say ur obese and losing weight would solve all ur problems lol. like i went for bloods and bp check and the nurse was perfectly fine, but she was looking at a letter from a consultant contacted by the gp... who had never seen or talked to me... saying yeah weights the problem here. its like telling anyone covid was the main health event before my bp rose sky high just goes in one ear and out the other. also "exercise more" I Have Chronic Fatigue And Pain i literally cant afford to tire myself out with going to the gym or on a run bc then i will. not be able to do anything. god im so fucking annoyed, and its the same fucking thing talking to literally any doctor. weight! weight! lose weight! when i say i have cfs none of them seem to understand what that actually means for my day to day

what /i/ think i need is to never have to work full time again. then less stress -> better health and less fatigue -> maybe ill lose weight and make the drs happy idk but it would certainly feel better. but nobody's gonna prescribe me "employ this person for 50% of their current work time and 100% of their current pay"

[trashbirdthoughts]

I get a little frustrated at myself a lot. I want to get back into the gym, but due to health issues flaring up between POTS, CRPS, CFS, etc. It makes it so hard to.

Flaring up means having to start over sometimes like right now. I was going 5 times a week when suddenly a flare hits either because I over exert or weather. And suddenly I'm back at square one. I'm struggling to walk 10 minutes on a treadmill at 1.5 mph. It's taken me awhile to not be so fucking down on myself about it. It's hard because I want to be angry and upset and frustrated. It shouldn't be this fucking hard to want to exercise and do things.

But the reality is, that it is okay. It's okay to not be able to do things correctly or able bodied all the time. It's okay that progress isn't linear. It's okay to fail and try again.

You are not a failure. The lack of progress doesn't mean you are inherently failing. Progress and ability especially when it comes to disabled body's is complicated. Continuing to try, I think is the most important bit. Even when it's really hard.

[keepingupwithkrispy]

Do you have any ‘bad’ motivators, things you may feel ashamed to admit, but still give you motivation?

I have done fitness for the last 10+ years for different reasons. 

I began my fitness journey to partake in some form of physical activity since I didn’t participate in sports or recreational activities growing up. In high school I started going to Anytime Fitness at this time my motivator was lack of physical activity and body development. In college I was introduced to CF at this time my motivator was out training a college lifestyle of eating and drinking. 

For many years I struggled with eating appropriately and balancing my exercise regimen. I often had the mentality of wanting to look good and not push past those physical and mental barriers of performing better. 

The last year and a half I have let go. My primary reason for going to the gym now is to see what I am capable of physically and mentally. I love feeling strong. I no longer care about what my body looks like or what it should look like according to society. Tbh, it is the least interesting thing about me. I have several motivators (good and bad) as to why I keep showing up for myself in the gym. 

There are two bad motivators that I am working on letting go of. The first is comparison…not with others, but with myself. It is okay to compare yourself to previous versions of yourself as long as it is in a positive light. I have been doing the opposite and using the comparison in a negative way. I’m living my life with a sense of spontaneity and taking it day by day…with this comes a lot of feelings and emotions of the unknown. As I’ve come to this conclusion I realize I need to do what feels right for my mind, body and spirit, which is different each day. The second motivator is allowing comments from others to infiltrate my psyche. People who have their own shit to work on, but choose to say hurtful things…lacking empathy and humility. I understand this is about them not me, but I have let all the comments take up space when they don’t deserve the space because I want to prove them wrong, but I’m not here to put on a fucking show. I’m out here trying my best, being grateful for what I can do and proud of what I will be able to do. So, here’s to proving myself right. 

[iconicfitnessae]

“Don’t Judge a Workout by its Weights: Debunking CrossFit Myths”

As someone who has worked and trained in a predominantly Bodybuilding world for most of my fitness career, my views and opinions of CrossFit were for a long while based only on what I saw, read and heard. I was very much guilty of “judging the book by its cover”, or perhaps in this case we could say, “judging a workout by its weights”, as since stepping onto the CrossFit scene and into a CrossFit box, I have come to realize how many of my previous perceptions were actually grand misconceptions. Just like many others I had fallen victim to several myths surrounding this incredibly exhilarating fitness regimen, leaving me with the conclusion that CrossFit is definitely not for me.

From assumptions about CrossFit ‘gyms’ being places where heavy objects are recklessly tossed around, to concerns about all the injuries that result from such cave-man behavior, there’s no shortage of skepticism when it comes to CrossFit. However, having now experienced the true reality firsthand, it’s time to shed some light on some of the most prevalent myths about this very exciting and beneficial world that is CrossFit.

MYTH: CrossFit athletes are super athletic, competitive, and egotistical meatheads. First of all, and contrary to popular belief, CrossFit boxes are not exclusive clubs for Zeus like characters with chiseled physiques and rock hard abs, who are always in competition to look or perform better than one another. In my experience, especially here at Iconic Fitness, the atmosphere is warm, welcoming and supportive, with members of all ages, body types, and fitness levels working TOGETHER towards their own individual goals – something I have come to learn is one of the most paramount and beautiful characteristics of any CrossFit box and the community thriving within.

MYTH: CrossFit is dangerous and causes injuries. While there may be accounts of injuries associated with CrossFit workouts, the reality is this – the risk of injury (in any kind of physical activity) depends more on the individual and proper technique (or lack thereof) rather than the fact that it happened in a CrossFit environment. Pushing too hard, not warming-up correctly, or simply forgetting to leave your ego at the door – can always result in injury. Therefore, through a combination of responsible coaching and gradual progression, CrossFit can be one of the safest and most effective ways to improve fitness. Furthermore, and hold onto your hats for this one folks – CrossFit can actually help PREVENT injury! By implementing and practicing functional movements and exercises that imitate movements performed in our daily lives and tasks, you’ll be better prepared to carry heavy boxes or pick up the kids without worry or difficulty!

MYTH: CrossFit uses weird and made-up acronyms and words that make no sense. This one may have some truth to it, as CrossFit definitely has its own unique vocabulary, filled with creative acronyms and terms that can be intimidating and confusing to newcomers. EMOM, AMRAP, RFT, DU, OH, KB, and 1RM to name a few. We’re also talking jerks, snatches, and cleans (which doesn’t involve any kind of broomstick or soapy chemical). But embracing this new, ‘foreign’ language is all a part of the fun, and adds a sense of camaraderie and humor to the experience. While the terminology may seem daunting at first, it soon becomes second nature, and proves to be a unifying element, making you feel like a real part of the tribe.

MYTH: CrossFit workouts are too short to be effective. CrossFit sessions can unquestionably deliver a highly effective workout in a short amount of time – a truth that you will know for sure if you’ve ever done CF yourself. As a matter of fact, CrossFit was originally designed to challenge the mentality of “more is better”, by having the intent of being short in duration but high in intensity. While traditional workouts may span several hours, CrossFit’s emphasis on high-intensity and interval training (as opposed to high volume) allows for maximum and efficient calorie burning and muscle engagement to be achieved in as little as 30 minutes. This makes it especially ideal for those short on time, but still wishing to prioritize physical activity and achieve their fitness goals.

MYTH: CrossFit will make women big and bulky. Engaging in CrossFit workouts WILL NOT automatically lead to big and bulky muscles. While observing professional CrossFit athletes and bodybuilders might spark concerns about gaining excessive muscle mass, it’s crucial to understand that achieving a physique such as this requires a lengthy period of time, comprised of strict adherence to specialized diet plans and fitness routines (so ladies, unless you’re planning on devoting the next couple of months to training like Tia Toomey or Sara Sigmundsdottir – you’re safe!). In reality, CrossFit offers numerous benefits for everyone, such as improving overall fitness, enhancing strength and endurance, boosting self-esteem, and triggering the release of endorphins, often referred to as “happy hormones”, and no one can say they wouldn’t like more of that!

MYTH: CrossFit hurts, A LOT! CrossFit workouts are designed with the aim of pushing participants to their limits, which naturally results in intense physical exertion (which ironically ends up being one of the things loved most by CrossFitters). The idea of such discomfort may be intimidating or even discouraging, but really it’s a testament to the effectiveness of the workouts. It also provides you with the opportunity to go above and beyond what you thought you were ever capable of, and this is where the real magic starts happens and goals are achieved! Embracing the challenges presented by each AMRAP or EMOM furthermore leads to improved endurance, strength, and mental toughness, ultimately enhancing overall fitness levels. And if its the pain that follows the workout that is truly worrisome, fear not – by incorporating a proper warm-up and cool-down routine, as well as adequate hydration, and rest, you can safely manage and reduce soreness whilst still maximizing the benefits of CrossFit training.

CrossFit continues to grow in popularity, despite the above mentioned myths that have evolved and been blown wildly out of proportion. So instead of basing your opinions on stories or experiences found online or buzzing around your current gym, leading you to the final conclusion that CrossFit is either extremely dangerous, pointless, or definitely not for you – why not do your own research. Locate a few CrossFit boxes in your area and check them out!

Perhaps you will realize that all the stories were correct, and CrossFit is certainly not for you.. but perhaps you realize that with CrossFit, your life will never be the same again. Perhaps you realize that CrossFit can in fact change your life for the better, improve your confidence and health, and utilize workouts that provide excitement and variety within the usual boring gym routines, that will furthermore allow you to become even stronger, fitter, and better than you ever imagined, whilst being encouraged and supported by your new found family that emerges from any CrossFit community.

I’ve really done all I can to debunk the myths, now the rest is up to you. Stop simply judging the cover and read the dang book!

Click here to sign up for our 30-Day Trial. We’ll book you in for a 30 minute complimentary Transformation session with one of our Iconic coaches to find out more about your current fitness levels and abilities, lifestyle habits, and health and wellness goals. And from there, the real journey begins!

[mydiary-com]

080623

Hi, there

How r u? Hope you’re doing great wherever you’re, send u hugs

Nosotros hoy andamos en ola de emociones jajaja pero esta es una ocasión especial porque hoy oficialmente hemos dejado de ser becariaaaas, firmamos contrato en la tarde y estamos muy happys por eso ✨

Even tho jaja we were pretty idk all day long, I mean I wanna tell the good news but actually I found a little hard to find who tell. We showed the pic to my mom when I arrived, I posted in close friends de te y lo quería subir a cf de insta pero no sé, algo me dice que mejor no, I hace close friends de mi trabajo y idk doesn’t feel right

I told Edu y agh idk este wey I’ve found that it’s pretty selfish in the meaning that I feel minimizado when I’m with him and idk I feel that he’s just like that, he’s Scorpio and wey idk I hear it when I say it and it’s like why are you justificando que te haga sentir mal? I mean he’s just my friend not like a boyfriend but doesn’t your friends aren’t supposed to make you feel like that? Idk maybe it’s just my mentality y no debo de tomarme las cosas tan personales pero sometimes I’d like to be asked how was my day, or be listened, or not put after you know? Agh idk he’s could be an asshole in that way but I mean lo queremos al bato and sometimes I’d love to tell him this but idk tanto no ha salido el momento tanto no sé cómo expresarlo para que suene de la manera que quiero que lo entienda sin que se no se que podría pensar jajaja pero ash idk

Anyway, he has been the one that has been there this time and he’s a good friend in his way and maybe that hurts me cause lo estimo mucho y que una persona que estimo mucho a veces me trate in some ways we’ll hurts, it’s like when some say tomate las cosas de quién vienen y wey they’re important people in my life e importa, me importa mucho how they react to me, like my mother jajaja vergaaaa lo que me cuesta con ella leerla y que se que neta sus intenciones son buenas porque lo son pero verga la manera en cómo a veces lo expresa parece que a cada rato quiere buscar pleito y que lo que pide o quiere lo expresa en maneras que es como de ay madre, lo haré, me podría enojar y lo estoy haciendo un poco pero decido no hacerlo y llevármela tranquilo y al final ya sé que es lo que quieres decir so serenidad jajaja y por ejemplo con Edu el pedo es que solo habla de él jajaja y acostumbra a minimizar-me o así lo siento yo ay no ya que horror mi ex también hacia lo mismo verga issueeeeeees jajajajaja ay no regresaré a terapia un día de estos I need xd

Pero bueno, en panorama más bonito, estamos felices del lifestyle que hemos adoptado, amo esta nueva etapa de wey I wanna it I got it, no taaaan verga como una desearía pero si esta verga, jajaja aspiramos a mas, estamos trabajando para mas pero wey I’m 23, el próximo mes me suben el sueldo, ya ganamos en cifra de cinco números, la estamos rockets do en el trabajo, new retos se plantearon hoy, wacko coordi? 👀 omg estaría awesome, I’m proud of myself, party que se antoja, party que vamos, eficientes, más equilibradas, we’re doing more exercise, ya vamos más seguido al gym, nos estamos cuidado, nos estamos poniendo primero, a ponerle importancia a las cosas que se le deben poner (doesn’t excluye que algunas cosas duelen como lo anterior) pero we’re doing our best

Manifestanding crecimiento, aprendizajes, nuevas experiencias, achievement de nuevas metas, good surprises, health, seguridad, amor, cuidado a mi familia, y wey gracias por todo lo que está pasando, muchas muchas gracias, esta pretty amazing ver nuestra vida ahorita y que se siga viendo verga y se vea en un futuro aún mejor 💛

Te mando mil besos y abrazos, espero te encuentres muy bien, te mando un abrazo y nos escribimos luego.

Besitos

Loviu, Uri.

[the2amrevolution]

100% this! My PT and the EDS specialist I had momentarily banned me from stretching. They were like, "nothing in you needs to stretch. if it feels like it does, it's actually too stretched out and weak, and you need to strengthen it."

Recently I started to have pain from the back of my mid-thigh to behind my knee like I'm being stabbed after having to bend at the waist to do anything. I had similar pain when I did gymnastics that prevented me from being able to do the splits. Coaches always said I needed to stretch my hamstrings more. After all, I was a student who sat all day, so they must be shortened. So I tried. I could easily bend at the waist and touch the floor, palms flat, as folded as my stomach and chest would allow. No stretch. Just back of knee twinging.

Turns out, hamstring stretches are supposed to be felt in the top of the thigh into the butt. Back of the knee pain is nerve pain. The biceps femoris is pinching or rubbing against the sciatic nerve which runs between the two muscle segments. That muscle is what bends your knee. When you are hypermobile and your knees extend past 180 degrees, that muscle gets stretched any time you stand up straight. When you bend at the waist to do things like play with the dog, get laundry out of the machine, vacuum out the car, etc., your knees hyperextend even more because you need to counter-balance the weight of you upper body.

How do you make the pain go away? Strength training. A strong core and back to be able to support the weight of your upper body so you don't need to counter-balance as much, and strengthening the biceps femoris so that they are able to engage when you are upright to prevent the knee from over extending and thus prevent being stretched. Once they're strong enough to not be stretched out all the time, the sciatic nerve won't be as easily irritated.

Hypermobility without enough muscular strength can also cause widespread pain as the fascia tries to compensate to stabilize joints. It gets bunched in places and tight in others and generally causes pain. You can get myofascia release massage, foam roll, use a massage gun, etc. to temporarily relieve the pain, but as long as the muscles are too weak, it will return.

A friend of mine who is lucky enough to not have ME/CFS or exercise triggered MCAS took up powerlifting to manage her chronic pain. It started as a weight loss and fitness challenge with her husband, but she found the more strength training she did, the less pain she was in. She found out she has hEDS after joining a gym to learn to lift heavy safely, and the trainers there started noticing her joints were out of place as they taught her proper form and assisted her. Sometimes the exercise itself is what set the joint back by engaging the muscle that was connected to the too stretchy tissues that allowed the bone to slide from position. She was walking around with dislocated ribs and had no idea because she was just in pain everywhere with no physical trauma.

This is one of the big reasons that controlling my MCAS, finding out if something is wrong with my sleep, taking supplements to help my metabolic processes, and getting on more effective ADHD medications are really important to me. If exercise triggers my MCAS, then I'll be exhausted, unable to breathe, and have a constant migraine, so I still won't be able to do anything. If I'm not sleeping properly, then I'm doubling my causes of non-restorative sleep, and not healing or making up lost energy properly. ME/CFS causes my cells to go into anaerobic respiration too easily, so I'm not using fat stores properly, just glucose, and I'm producing less ATP than healthy people.

Supplements can hopefully improve oxygen transfer between cells so that I stay in an aerobic state longer, using both glucose and fat, and producing more ATP, and supplemental D-ribose allows me to produce some additional ATP without needing oxygen.

More effective ADHD medication (or an outsourced frontal lobe in the form of a cohabitating romantic partner, but only one of those things is purchasable at a pharmacy), would help me keep track of days and do routine tasks like short strength training sessions more frequently. I did get some ankle weights to put by my bed so I can slap those on to do some light weight leg curls while doing other things, but there is a limit to how much I can do from my bedroom versus needing to up the difficulty to further strengthen the muscle with real gym equipment.

If you have pain in your soft tissues and stretching doesn't help, look up strength exercises for that area. It's probably weakness that's the problem.

this is a friendly little post to say: if you find that doing stretches for wrist/shoulders/back/whatever either 1) don't help or 2) seem to make your pain worse, then please stop doing the stretches. the answer here is not to keep doing them becuase if you push through the pain eventually it'll get better, right?

listen to me. listen. stretches never did anything for me and at age 25 i learned i had hEDS, which meant 1) most stretches would never help me 2) depending on the stretch, could hurt me, so please. if they aren't helping. please do not keep doing them hoping that they will "eventually" help.

look into whether or not you have a hypermobility disorder or EDS or smth, great resource here: www.ehlers-danlos.com

[compassionmattersmost]

10: Embracing Your Own Pace: The Conclusion of Our Post-Viral ME/CFS Exercise Journey

Dear Friends, As we come to the conclusion of this series on exercising with post-viral ME/CFS, I want to offer you a heartfelt reflection on the journey we’ve been exploring together. It’s been a path of discovery, patience, and above all, compassion—compassion for yourself, your body, and your unique experience with ME/CFS. We’ve discussed everything from imagining workouts while lying in…

[celestialcatra]

Chronic fatigue guidelines scrap ME exercise therapy advice

The updated guidance for England and Wales recommends people judge their own "energy limit" when undertaking activity of any kind, and a physical activity programme should only be considered in specific circumstances.

It warns practitioners: "Do not advise people with ME/CFS to undertake exercise that is not part of a programme overseen by an ME/CFS specialist team, such as telling them to go to the gym or exercise more, because this may worsen their symptoms."

It also clarifies advice on a talking therapy, known as CBT, stressing that it is only helpful in treating anxiety around the condition, not the illness itself.

And it emphasises the need for early and accurate diagnosis.

Baroness Finlay, a consultant in palliative medicine and vice-chairwoman of the guideline committee, said: "Those with ME/CFS need to be listened to, understood and supported to adapt their lives. The committee members involved in this guideline have worked particularly hard to ensure care becomes more empathetic and focused on the individual's needs."

Opposing views

ME Research UK said the publication was "a significant step in both the acceptance of ME as a physical illness and recognition of appropriate treatment needs of those affected by the condition".

Sian Leary from the campaign group ME Action UK, said not publishing the guideline in August had been "devastating to thousands of people with ME", who she said had been "seriously harmed by graded exercise therapy".

Dr Charles Shepherd, medical adviser to the ME Association, said: "This new guideline will have a big impact on care for people with ME, and draws a line under the damaging therapies of the past."

Dr Alastair Miller, an NHS consultant physician in acute medicine and infectious disease in North Cumbria, said exercise programmes could be helpful: "It is unfortunate that so much emphasis is given to working 'within current energy limits' rather than a gentle and controlled pushing of those limits.

"However, it is to be welcomed that clinics will still be able to provide appropriate personalised activity and exercise programmes for those patients in whom it is felt to be appropriate."

Prof Peter White from Queen Mary University of London said: "I worry that this guideline seems to suggest that patients need to learn to live with CFS/ME, rather than be helped to recover from it.

"NICE have banned graded exercise therapy, in spite of it being found to be helpful in a major Cochrane systematic review, while recommending an energy management programme, which involves 'staying within your energy limits', for which there is little evidence for it helping, and some evidence that it doesn't."

[samuel-is-an-idiot]

Alright hello its me again here to talk about my disabilities and my experience with biggots as a disabled teen ^^

I have Chronic Fatigue Syndrom, autism and chronic pain. Which in itself is a ✨wonderfull✨ mix of disabilities. BUT THATS NOT IT I also have immune system deficiency (*in a southern accent* mah whate cells dont be working real well) and some sort of spasmic bullshit I dont understand and doctors dont either, heres the info we got on it; whenever I feel a strong emotion (ex anxiety/joy) or focus on something too hard my muscles lock up and tense, I dont realize it until one of the following happen; tremors, cramps, limb doesnt respond to nerves, limb does respond to nerves but not to muscle. We believe this spasmic bullshit may also be the thing causing me ✨pain attacks/crisis✨ which basically feels like my nerves are being pulled out through one of my limbs. Its really really painfull, makes me cry everytime and the first time it happened I ✨screamed✨.

I have been suffering from all of that since I was 11 (though CFS came later around when i was 14-15 y/o) and one of the thing that scared and scares me the most still is having to deal with ADULTS who dont believe me when I say I'm disabled because its not visible. I have had teachers in the very beginning forcing me to pick up a pen and write while my right arm was weak enough that I could NOT pick up my own FORK to feed myself. For a few years my mom had to cut my food because I couldnt and people, ADULTS, Teachers, didnt fucking believe me when i said "I'm sorry I cant do this or that", "I cant climb up to the gym because I'm afraid I will pass out from exhaustion". I went through YEARS of physical therapy as a teen only to not be believed that I truly was disabled. Even a DOCTOR believed that the pain I described was impossible and through the whole consultation we were with her fucking made me cry out of pain from the exercise she made me do.

Explain to me how that's normal behavior. I fucking dare you. You dont get to assume what a person went or is going through from how they look. You dont get to call someone, especially a fucking kid, a liar because you dont understand their bloody condition.

You wouldnt go up to someone who told you their dad is dead and say "hey I dont believe your dad is dead. I think youre a liar. And if you don't call your dad right now you're going to be in trouble"

I used to be an extrovert and then i became disabled and I was bullied by my fucking teachers and school nurses and for some reason I became a really anxious and socially awkward introvert. Weird right?

TLDR: Local teen gets angry at adults for causing them social anxiety and insecurity about their disability

[miraefmdarchive]

q3 2021 update & plot call !!

below the cut, you can find an update on miss mirae’s current life, career, and development for quarter three, as well as plot and thread ideas! if you see anything that you’d like to plot out or write with her, like this or message me, and we can get to it! if you have any ideas that aren’t here, feel free to let me know as well since mirae’s pretty open to almost anything right now.

professionally

her main work focuses are currently silhouette schedules, her youtube channel, and acting. she might start picking up some cfs/brand deals before long too

she began filming her next acting project in quarter two, but is continuing to film it through early september, which is netflix’s persona. technically, it’s her first ever drama project, but it’s anthology series, so it’s like a middleground between her previous experience in films and a burgeoning interest in branching out into dramas. anyone who has been in dramas before, mirae would be really interesting in talking about that! or if anyone wants to come visit her on set, that’d be cool, too

she’s excited about her new youtube channel, so catch her at dance studios or around the gold star building rehearsing covers or around seoul filming vlogs. she could talk to someone about video ideas maybe? if any ladies with a youtube channel or planning to claim one want to collab, that’s something too!

she’s also still working on a potential solo release. i’m thinking about having her release it either in q4 this year or q2 next year depending on how i decide i want her other acting claims to play out. i don’t have it claimed yet and can’t until the points shop is open again, but considering that, listening to potential demos is still something else she’s working on. feel free to have your muse run into her and talk to her about that since i’ll probably claim it shortly after the points shop reopens

personally

honestly there’s not a lot planned in this area? i don’t have many plots for her so if i can get more of those, i’ll probably have a better idea of where she stands here

she mostly wants to prove herself professionally rn

she’ll be visiting her dad and mom separately for chuseok, but she’ll be in seoul for at least part of that break if anyone doesn’t have family to visit and wants to come over to her place! or they can go out to get drinks and/or food

other plots

her plots page is here! everything on it is still open, so if you see anything that could work, let a girl know. 

mirae loves dancing, so if anyone wants to be dancing buddies with her and hit up the dance studio, she’d love that! deeper connections can be built on that, whether they be friendly or romantic/sexual, or even if we want to push it into something negative/antagonistic

she’s always willing to be a mentor/older sister figure to anyone who needs one. just don’t expect her to go full mom

she did go viral for her mushroom chocolate dance video if anyone wants to bring that up

she does a lot of exercising: pilates, yoga, aerial silks, pole dancing, a lil swimming, some running just working out at the gym, so that can be the basis for a connection/thread too, whether your muse is as into it as she is or not

mirae is very ambitious and wants to branch out more individually but is very dedicated to silhouette, so idk she could talk to someone abt that. maybe they’re in the same situation as her or less dedicated to their group or have less ambition for solo activities

if you’re planning on claiming an acting role for your muse, i’d be super interested in talking about mirae claiming a cameo role in it if there’s any available that fit her age and the types of roles she’d play.

i’m also really interested in her starring in mvs if anyone’s planning on any music releases with mvs with acting roles

yeah mirae’s a pretty blank slate right now since she has hardly any plots, so if you have any ideas please do let me know!!

prompts (baseonline & schedules)

i still have the following baseonline prompts open: practical joke, advice live, choice live. you can see the ideas i had for those here!

she’s promoting with silhouette from july 19-august 19 so she can run into people during that

in august and september, she’ll be around the gold star building a lot as silhouette prepares for another comeback

she has festival dates with alien, 7rophy, lucid, impulse, decipher, bee, lipstick, knight, charm, chroma crystal, gal.actic, mars, aria, origin, and fuse

she’ll probably do all the volunteering? but she’s especially excited for the animal shelter one since she has a few pets of her own if anyone wants to gush over animals with her!

[rotationalsymmetry]

That post I just reblogged has good points.

I don't think "restorative activities" and self care are entirely the same thing.

I don't find brushing my teeth pleasant, and probably never will. It's still self-care. Because while doing activities that mitigate stress is one form of self-care, and that's probably what OP is talking about as self-care, self care is everything you do for your physical, mental, emotional, social, spiritual, heck with it, financial well-being. All aspects of your well-being.

this is why I think analogizing to caring for someone else is helpful. You'd never understand "child care" to only be playing with your child and storytime and doing fun things -- those are important aspects of child care and children need them, and there's also a thing where they can seem less important or less virtuous than the unpleasant stuff which I don't think is true, but they also need food and doctors' appointments and other things that aren't intrinsically pleasurable. If it's child care when you do it for a child, it's self care when you do it for you. Going to the fucking doctor is self care. And that has nothing to do with whether you like going to the doctor, and everything to do with "health is multifaceted, and people need many different things, including things they like and things they don't like, in order to be healthy."

Incidentally? As far as I'm aware, the stats showing that exercise tends to have a beneficial effect on mental health are not actually connected to whether the exerciser finds the exercise intrinsically rewarding or not. I'm generally in favor of looking for ways to exercise that do feel good just because life's too short to make yourself miserable, but the value of exercise isn't just "is this part of my ideal of a good life", it's actually beneficial whether you enjoy it or not. If you go to the gym for 30 minutes three times a week and hate every minute of it and don't even feel that great afterwards, that sucks and I hope you can find a form of exercise you like better, but that's not actually going to negate that exercise strengthens your bones and lowers your heart rate and yeah, also lowers stress.

Which, don't get me wrong, I have CFS and very much don't think exercise is an unqualified good for everyone! I just think it's a mistake to see the stress-relief benefits -- let alone the broader health benefits -- of excerice as strictly a "is this something that makes me feel like I'm living my best life" thing.

(Note: this probably comes across as "you have to exercise" and I don't actually mean that. People aren't obligated to maximize their health. I just think that when people are deciding whether they want to improve their health and how, it helps to depict possible health-improving options accurately.)

I wonder if some of this focus on self-care as things that feel good (or...that are a sort of self-expression?) is coming from a place of thinking you can't justify things that feel good without coming up with some "virtue" justification, like "this is important for my health"? Fuck that. Doing things that feel good is its own reward, is a terminal value, is worth prioritizing for its own sake. Pleasure is valuable on its own, and does not need to be justified via other values. Is that selfish? Then be selfish.

I have strong opinions on this, because as someone with CFS (and probably ADHD) I have to pay way more attention to self care than most people. I can slip up on my self care so easily -- getting caught up in something and forgetting to eat, forgetting to rest, staying up late because I just don't feel like going to bed. Spending long times with friends and family because I want to and I don't get to see them enough. A few years ago, I wasn't as on top of my self care as I could have been right before Christmas, and I get up to my family's on Christmas Eve and I play a card game because that's what my family does when we get together, and Christmas day I was a fucking wreck and had to go home a couple days earlier than planned. Because I'm chronically ill and I fucked up on self care. One time before that, I was out with my partner and a friend from out of town and overextended, and I spent the rest of the afternoon being overly noise-sensitive and an irritable yelling asshole. Because I'm chronically ill and I fucked up on self care. And it's so fucking insulting to have people talk about how self care is about what kind of life you want when I can't have the kind of life I want, and if I don't do things I hate doing I get things that I hate even more.

I would be quite happy to live the sort of life where I periodically got caught up in writing stuff and didn't notice the time for hours, or periodically caught up in a great conversation with friends and suddenly it's 3 am, I'd be happy to have that kind of life, and if I try to live that kind of life now I'll end up with less overall time with people I care about and more yelling at them.

And sure, I like yoga and it's good for me and I like long, hot baths that smell nice and I like guided meditations, I like a lot of the things I do for myself. But they're not good for me because I like them. If I was seeing my self care solely through a "what do I like" lens, I'd be a fucking mess. (With even worse dental health than I have as it is.)

If you want to talk about prioritizing things that make you feel good or like you're living your best life, that's awesome, by all means do that, but come up with a different fucking name for it.

[of-another-broken-heart]

I was randomly possessed to just. Do some squats yesterday? I was waiting on the microwave. I did 10 squats. Just to move. In the kitchen.  And then I did a little walking later with my friend. Maaaaybe a half mile, if I’m being generous??

I’m so out of practice. My thighs are having a rough time today. And my right hip, especially. 

It makes sense, obviously. Years of being sedentary due to fatigue and financial reasons and social reasons. Of course 10 squats and a half-mile walk all of a sudden have done this to me. 

Still feels bad. 

I miss exercising. I miss going to the gym. 

Shit’s so fucking expensive. 

I’m over here, slightly giddy because I’ve got “st*mulus” funds hoarded right now that are as high as I ever actually managed to save when I was working. So I know, technically, I can afford a few things. 

But years of poverty trauma mostly won’t let me. The $10 fruit smoothie indulgence yesterday was a combined celebration. First time seeing a friend in years. Early birthday for us both. 

I still looked up the pricing. Because I want to be able to do it, again. 2021 really coming through on the “Let’s remember how to WANT! And SUFFER for it!!” front.  The Black Card membership price is way higher than I remember. Basic is still $10/month (plus $39 annual membership fee - but “no contracts” somehow??) and the Black Card is more than double that - $23/month (same annual membership fee - same “no contracts” claim).  Basic isn’t really worth it. Tied to one single location, not allowed to use a lot of the facility’s perks, can’t bring a friend. So the Black Card would be the only plan I would actually consider. But not when a year clocks in at fucking $315 (plus taxes and fees*). The Basic ends up just about half that - $159 (plus taxes and fees*). But you go alone, locked to a single location, and can’t use more than half the stuff the place offers. 

I can’t believe there was a point in my life where I was doing well enough that I could afford that.  And I wasn’t even doing that well!  I looked through my old records. I think the most I ever took home in a year was a little over $9k. That was my income during the busiest of my years in my last job, making $15/hour.  And I thought i was doing well. I thought that was great.  My boss tried to make me feel guilt for doing that much work and earning less than $10k a year. He, who owned not one but TWO houses by the end of it all, and was able to comfortably plan and start a family, and own new (less than 5 years old) cars for both him and his wife -- HE wanted me to feel guilty for the price of my work done for him, even though it still clocked in far, far below the poverty line.  God, that’s so fucked up.  That’s SO fucked up. 

In contrast to making literally nothing for years, though. $9k does sound huge. And it’s been years of cost of living inflation and more wage stagnation, and pandemic and inhuman corner cutting so businesses can still keep profits ahead of human life since then. So even though $9k sounds huge it’s still just. What? A few months of survival? Rent and food and medical expenses and car costs and hygiene and household cleaning and maintenance... $9k is nothing. 

I wish gym memberships were covered under insurance.  All this fucking panic over “Fat is BAD! FAT IS BAD!!” But fat-removing surgery is just cosmetic, honey darling sweety. Diet and exercise! Diet and exercise!!  But all on your own dollar and time. You get NO nutrition education, no metabolic screening, no meal planning, no food assistance! You get NO safe space to move or exercise, you get NO coaching, you get NO training, you get NO gym access!

It’s all a fucking sham. 

I just want to feel better. I will probably never get to the point I was before - especially not if it turns out I have CFS (in which case exercising can worsen your health, isn’t that fun!) but I’ll probably die before I find a doctor willing to even entertain that diagnosis, much less run the tests and criteria for me when there’s conveniently my weight and lifelong depression to use as scapegoats instead. 

[shinysun]

The Mask

Imagine the feeling of having a colicky baby. You haven’t had any peace or sleep for a month. You have forgotten who you are, how you got here or where here is.

Imagine you overdid it in the gym/ran a marathon yesterday and your whole body aches today.

Imagine you have just done press ups till your arms collapse and you can’t lift them any more. Your arms and legs feel like this just from having a shower.

Imagine that tingly feeling of a cold sore about to appear, you feel that all over. Some of your skin and flesh feels like it is trying to crawl away.

Now add a permanent headache, sore throat and tinnitus.

Oh and someone is messing with gravity too. Most of you feels far too heavy but some bits want to float away.

All your hard earned muscles are dying because you can’t do any proper exercise any more so you keep getting random spasms and cramps.

You are sitting at your desk at work and the noise, light and movement are jangling every one of your nerves as though there is a vibrating tuning fork inside you but you need to concentrate, you have work to do, a mortgage to pay.

Now it’s lunchtime, for some reason you feel the need to write down how you are feeling and that helps a bit. You know you need to drag yourself out for a walk. You would much rather curl up in a ball but you have to keep moving a little at a time or you won’t be able to move at all. So, you’d better make a start.

When I said “Fine thanks, how are you?” That’s what I meant.

(Myalgic Encephalomyelitis (ME) is a severe chronic illness in which symptoms are worsened by physical exertion. In some countries and some literature, ME is referred to as Chronic Fatigue Syndrome (CFS).)

[spooniemumoftwo]

This is me!

Have you ever heard of ME CFS? Do you know anyone with ME CFS? Have you ever heard the phrase ‘counting spoons’? 

Having read a huge number of blog posts on ME CFS over the past few years, this is my own answer to some of these questions. Please bear with me – this has been a work in progress for a while now.

Me – Could I have M.E?

As a teenager, and even recently, I never imagined that I would find myself writing about my experiences of life with a chronic illness, and yet, here I am. I am 33 years of age, a wife and mother to two beautiful children, and I have a diagnosis of Myalgic Encephalomyelitis (ME CFS). 

Over the past few years, I have come to realise that ME CFS is something you can’t fully understand or describe to someone unless you have the experience of this debilitating illness yourself.

Where do I start?

Over the last three years, there have been ups and downs; life has been interesting, and the learning curve I have found myself travelling on has been almost vertical at times. I am not there yet.

Back in Summer 2017, I woke one morning to find I had no voice at all. This was unusual for me but not the first time it had happened. Things had been busy and a little fraught with two small children, whilst I was also working almost full time, so I thought nothing of it. I now suspect, as do the consultants I have spoken to since, that this was my body’s way of fighting the Chicken Pox virus, as my youngest came down with Chicken Pox two weeks after I first lost my voice. A week without my voice went by, writing notes for my husband to ignore as he felt appropriate, and giving my children 'the look' instead of telling them what I was thinking, and I spoke to my GP who diagnosed me with Acute Viral Laryngitis, and prescribed me three weeks off work and TOTAL voice rest, much to my husband’s delight and amusement. Three weeks later I returned to work, having slept all day for at least two of the three weeks I’d had off work. I was shattered. I never imagined returning to work after only three weeks off would be that tiring, but I did it. I underwent a further six months of speech and language therapy sessions (ironic considering my own role as a speech and language therapist) to help me work on my returning voice and my worryingly limited breath support, something I had only noticed since losing my voice.

Nearly twelve months on, in April 2018, I found myself signed off work again, this time with suspected Labyrinthitis. I experienced dizziness on and off, and again, I slept for most of the time I was off work. I was finding it hard to put sentences together, and felt like my whole body was being held down by a weighted blanket. Three weeks off work again and then I returned to work and my usual routine, with a promise to myself to take things easier this time. The dizziness continued but not enough for me to be off work, so a referral to a cardiologist followed to check it was nothing cardiology related. A 24 hour ECG followed by a 32 day ECG test demonstrated nothing significant, and therefore this was put down as yet another symptom I had no answers or reasons for.

By August 2018, I realised I had spent the majority of the summer term in schools telling myself ‘if I can make it to the summer holidays, I will be okay’ and yet, there I was, at the start of the summer holidays, and I hadn’t allowed myself to slow down at all. I have always, even as a pre-teen and a teenager, worked towards the school holidays, and continue to do so as an adult. I recall, as a teenager, regularly sleeping for the first one or two days of a school holiday, or suffering with a cold and feeling generally unwell for the first few days after allowing myself to slow down or to relax, and yet, here I was, putting the same pressure on myself as I always had. This time, however, I did not allow myself to rest. I knew what would happen if I did.

August 2018 saw me celebrating my own mini achievements regarding my engagement in a Couch to 5K running programme. I have never been sporty, and running was my least favourite exercise. However, for some reason, in 2018, I decided I was going to make myself enjoy running! I soon found running gave me time to myself with my thoughts, (unless accompanied by one of my chatty little people who often wanted to go with Mummy on a run) and running was my 'me time'. I managed to complete my first ever continuous 20 minute run in the middle of August, a very small achievement for many, however for me this was huge! I was becoming a runner, or so I thought. I only ran once more that month, and haven't managed a run since…

The summer holidays passed by and at the end of August, we celebrated my eldest child’s 5th birthday. I will never forget the call we received first thing that morning, to tell us that my grandfather had sadly passed away in the early hours of the morning.  On my daughter’s birthday. I held myself together and threw all of my energy into celebrating my daughter’s special day. I was heart broken, and yet, as always, my children came first, and always will. The day after, we hosted a party for our daughter as we had planned. I could think of any number of places I would rather be, than hosting a children’s party, but for my children, ensuring they were happy, and maintaining the usual normality, especially things they had looked forward to, was essential. After we had cleared up, and the children had been put to bed, revelling in the excitement of the day, I took myself off to the gym, and pushed myself to run as far as I could.  I managed a 35 minute continuous run, telling myself “it was just for you, Grandad!'’ I was exhausted, mentally and physically. Running had allowed me time to myself to clear my head and my thoughts on many occasions prior to this, however that night, I was broken. I could do no more. My head hurt, my legs hurt, even my breathing was draining me.  I was done.

Two days later, I lost my voice again, and this time, I listened. I listened to what my body was saying, and started to put a few of the pieces together in my story. I have always pushed myself as far as I could push, but I was spent. Emotionally, and physically, I had nothing left. I spoke to my GP in view of my previous significant voice loss, and was instantly told to take some time off work to recharge and rest my voice. I reluctantly agreed to take a week off to recharge before going back to work.

A week later, at the start of September, I saw my GP, accompanied by a very good friend, to make sure I gave the facts and was honest about what was going on. We talked about everything. With the support of my friend, I listed all of the symptoms I had been experiencing, and yet not acknowledged, things I was finding difficult - sensitivities to light and noise, complete physical exhaustion, difficulties concentrating, poor spatial awareness - there can only be so many times a person can walk into the same photocopier in the same position on the same day. (My record was five times one day.) I described the difficulty I had in expressing myself and communicating with others at times, and my concerns about the slightly narcoleptic speed at which I could fall asleep and still feel totally unrested when I woke up, no matter how long I slept for. I raised my concerns and questioned whether I could possibly have some signs of ME CFS, however my GP said that at this stage, she did not feel I had ME, and that there were a huge number of reasons I was feeling as I was at that time. She was right about that, there had been a lot going on. I reluctantly left the doctor’s surgery with a certificate signing me off work for four weeks, and I was under strict instruction to rest completely, and not to return to work within the next four week period. I have never taken time off work willingly, other than for the usual expected absences due to the usual common illnesses, and therefore this went entirely against my work ethic. But this time, I had to - I was spent. I had no idea what was wrong with me, and how long it would last.  I was worried and totally exhausted.

A month later, I returned to my GP to try and persuade her I was ready to return to work. We talked about how the last month had gone, how I was feeling, and what my thoughts about work were. I tried to list the positives to show I was feeling better but what were they? I was sleeping all of the time other than when I had to be awake to do a school run, or to look after my children, which I had been doing mainly from the sofa whilst they amused themselves in my sight. I was finding it difficult to carry out simple and regular tasks such as showering, which left me incapacitated and lay on my bed for some time before I could continue with the day. Cooking and preparing meals were a challenge, as this involved me being upright for longer than was comfortable. Having a conversation on the telephone was exhausting, and yet talking to someone in person was strangely slightly easier. I was often disorientated and a slight change in plans left me confused. On really bad days, I frequently could not have a conversation without losing what I was saying, and found it difficult to think of the words I wanted to say. My mind went blank. None of this made sense. I was 31 years old and generally healthy. What was wrong with me? I sounded like I was making this up and began to doubt myself. My GP informed me that she had been thinking about me, and had spoken to a colleague of hers for some advice. She advised that after some thought, she felt a referral to a specialist in Chronic Fatigue may be worthwhile, as it was possible that some of my symptoms could be signs of ME CFS. That made me anxious. I had suspected that this may be the case for me for a while, but to hear a clinical professional confirm my suspicions and want to investigate further sent chills right through me. How and why was this happening? We agreed that I would be referred to the consultant specialist, and I left the appointment with another four weeks off work, and a hope that I would return to work after another month, IF my energy levels had increased sufficiently.

Another month later, I returned to my GP, and despite me still experiencing significant fatigue, I was desperate to return to work and some normality. My GP reluctantly agreed to a phased return to work which would be monitored closely by her. I returned to work, initially for two half days a week, with a view to being back to my normal thirty hours a week by the end of December. I was still exhausted. Each day was a huge challenge, but it felt so good to be back at work! I tried to take things as easy as possible, as I was mindful that I needed to read the signs and listen to what my body was saying. I didn't feel like the person I was before, and yet just being 'me' again, in my usual workplace was a tonic.

In February 2019, I saw a consultant specialist in chronic fatigue, accompanied by another amazing friend. We talked through everything, literally everything! For a whole two hours, we discussed things I was able to do and things I couldn't do. Things I enjoyed and things I didn't. We talked in detail about my childhood, family history and medical history. I was referred for a sleep study to rule out sleep apnoea, and was advised that if the results of this study were unremarkable, then yes, I would be diagnosed with ME CFS. Otherwise, the diagnosis would be sleep apnoea. I felt sick, but with support from my friend, my husband and my family, we talked things through. But there were still no answers.

I am so lucky to have an amazing family and so many loyal and caring friends around me who know me better than I know myself at times. I can't express my thanks to each and every single person who supports us. Those who are there for me, to listen, advise and give the best hugs, and those fabulous friends who just know what to say and do when its needed. Those who try to understand what's going on, and those who know me best! My amazing family and friends regulate me and aren't afraid to tell me what I need to hear, despite this often being the harsh reality that I can't see (or don't want to!). I am often told to rest and that I need to put myself first, but that's not how I work, or it’s not how I've worked in the past anyway. I know I unintentionally frustrate the people I am closest to with my stubbornness and drive, and my reluctance to 'give in or give up', and I am so grateful for the support of so many people.  

I finally received my appointment for my sleep study at home at the end of May 2019. I was shown how to fit the oxygen tubes, oxygen monitor and all the gubbins that go with it and was sent on my way. Honestly, the sleep study was not the best night of sleep I've ever had...it turns out I'm a little more claustrophobic than I thought I was. But, by the following morning, the test was done and the equipment was safely returned to the hospital. My pending diagnosis was in their hands now. I received a letter at the start of July 2019, to say that I didn't have sleep apnoea, so there it was. A diagnosis of ME CFS.  Mixed emotions flooded me...relief that I wasn't going to have to wear a mask to sleep, and yet dread at reading the words I knew would be in my next letter from the consultant! On 25th July 2019, my letter arrived in the post. It simply said 'I can confirm that this patient has ME CFS. I will refer her to the local ME service for support'.  I was numb. 

So many questions!

How will this affect my children? What will happen next? Where do I stand with work? Will I need help? What does the future hold? All these questions filled my head. Many questions remain unanswered even twelve months on from receiving this letter. With no cure or successful treatment for this, I felt a mixture of panic, sadness and dread and telling my husband the results we didn't want to hear was hard. How would I be able to be the wife and mother I so wanted to be with this chronic illness? My children are still so young. My husband didn't sign up for this! This all felt so unfair!

Since my diagnosis, I've been supported by the local ME CFS service and their advice has been invaluable. The learning we have done as a family about the illness, the symptoms themselves and life as we know it, has been intense. I am able to recognise some of my triggers and my responses, though these constantly change and have increased in severity lately, but my husband, family and close friends will agree that I'm still pretty rubbish at really listening. I cannot seem to take it all in.  I am on overload.  I am a giver naturally...I don't come first in my head. I think of everyone else before myself - my children, my family and my friends. That is just me.  But it wears me out.  

My children

When I was diagnosed with ME CFS, my first thought was not for me, but for my children. This is not how I imagined parenting my own children. I felt a huge sadness that this would mean they had to grow up more quickly, to understand things a young child shouldn't have to, and that we may not be able to do all the lovely things we did when I was a child. I made a promise there and then...ME CFS wasn’t going to stop me doing things with our children. Our promise to our children even then, was that they would come first and that my husband and I would get through this together. This is not my children’s problem, it is mine.

My husband and I agreed very early on, not to give our children the details but just to explain, when needed, that Mummy just needed to rest. This worked for a while and kept questions at bay. I recall one lunchtime when I had prepared a 'picky lunch' at the request of our three-year-old son. I had laid on the sofa while they ate and watched a film. My daughter, aged around five at the time, touched my arm gently and gave me a crisp she had found, saying “Mummy, please have this heart-shaped crisp. It will give you more energy”. Wow!! I'm not sure how I held the tears in...I was completely taken aback! Without telling her anything other than that Mummy was sometimes a bit tired, this little sensitive soul had put two and two together and made her own conclusions. I knew we had to tell her a bit more now, if anything, to make sure she wasn't making her own ‘wrong’ deductions. 

We have recently been introduced to a fabulous book which has been integral in our challenge of giving our children the facts they need whilst not giving them too much. This book, 'Supercharged Superhero' by Gemma Everson has been written to help children understand why a parent with ME may not be able to play all the time, and that they can have fun in different ways with their family. We love this book, and my children often ask if we can look at it again. We've spent many hours reading through the story, chatting about the pictures and thinking of our own ways to have fun which I can join in with too. Find out more about ‘Supercharged Superhero’ and get your own copy of this gorgeous book.

The Journey so far – September 2020

My journey through diagnosis and learning to adapt so far has been uphill. There have been some huge changes I've had to make to my lifestyle, specifically our pace of life and my priorities. Having never been able to say 'no' to anyone or anything in my adult life, my major challenge is to start saying ‘No, no, no!’ Such a simple word, and yet I just can't do it! Others always come before me; my family and my friends, and yet I know I need to work on this. I know I unintentionally drive my husband and close friends to distraction...they know me better than I know myself often, and I am always being told to slow down, or to put me first, but I can't. Only when I have no option otherwise.

I spend my life falling asleep without planning to. I rarely see the end of a television programme or film. As a family, we often plan to go out on adventures in the mornings or early afternoon, as my more unpredictable time of day is usually mid afternoon to early evening. With careful planning, we do go out and make memories as a family of four, and we have lots of fun together. 

Everyday, I spend huge amounts of energy putting a brave face on to hide what I'm really feeling inside. I can’t do this anymore! I feel like most people only see me in a disguise, only my close friends and family know enough to understand what's really going on, and many of them can read me like a book. Conversely, I am constantly told I look really well, when in reality, I can barely stand up some days!  When things are really bad I can't easily hold a conversation, and I often focus all my energy on getting to the end of a day, an hour, a meeting or some other mini target I've set myself. I am wishing time away just to ‘get through’.  My illness is an invisible illness, and it is called that for a reason...it IS invisible!

On paper, my symptoms are fairly mild in contrast with others who have the same diagnosed condition. I am able go to work four days a week still, I am able to take my children to the park or on carefully planned day trips, I can still do some of the things I do for me, to allow me to be 'me', although these ‘things’ for me, are usually the ‘things’ I cut out if I need to slow down - leaving no time for Me!  

The Present and the Immediate Future   

In recent months I have seen a huge flare of my symptoms and have been much more debilitated than previously, but I am hoping this is just a blip in my journey. Working from home and home schooling two young children during the Covid 19 pandemic has not helped.  Life has been a bit mad for us all lately, hasn't it?! I can only imagine how people feel, who have much more significant symptoms, and I try to empathise with those whose symptoms are much more severe than mine. ME CFS is so varied and different for each and every person diagnosed with it!  

ME CFS is not well understood.  As it is ‘invisible’, others do not know I am suffering symptoms that often debilitate me. I cover it well by pretending I am ‘ok’ until I finally crash and burn at home. This is my reason for sharing my story, living with this condition, to promote awareness so that others may benefit from learning about how it affects a person and how people can make allowances. It is not going away!! Maybe I was ‘given’ this condition because I am naturally a strong person who is ‘driven’ to come through everything, no matter what. I do not know. I know that sometimes, I just can’t and I am worn out ‘pretending’. So I have chosen to share this and maybe I can make a difference to someone else. Acknowledging symptoms is just the start. Getting a diagnosis is paramount, and getting the right help is vital for any kind of future.

You've got this far, well done! Look out for how my story unfolds. Until then, we must stay positive!

XxXx

#chronicfatiguesyndrome #chronicfatigue #mecfs #me #myalgicenceohalomyelitis #cfsme