#and have unpredictable brain fog fatigue and flare ups

[raeofgayshine]

I made a joke about how every wedding should have Butter Barn Hoedown played at, because it’s honestly an iconic song. This led to my friend agreeing and saying they were going to bring it up to a mutual friend (though primarily their friend) for his (gay) wedding.

I made another joke after that if only I was marryable (alas I am aroace and have no desire even for a platonic marriage to be honest unless someone came along I felt comfortable enough for that with), I would play Butter Barn at my wedding.

And see. Here’s the thing I will be thinking about for a long time.

My friend then said, and I have no idea if this was a joke or serious, that I could just come to mutual friends wedding as their platonic date and all three of us could enjoy Butter Barn at a wedding together (And I could go to my first wedding also).

I don’t know if it was a joke. I don’t care either. The fact they would even joke about something like that, that I’m like enough of a friend they would consider that. Fuck dude, what am I supposed to do with that information? That makes me feel things

[ilrefantasma]

𝕹ico di 𝕬ngelo and Chronic Fatigue 

I have ME/CFS, also known as Chronic Fatigue Syndrome, and currently I’m going through a flare-up. 

Thinking about Nico as a person with CFS isn’t just calming and comfortable for me personally, but I also find it very fitting. I’ve seen theories before that Nico might be anemic, and I’m not dismissing them nor am I claiming CFS!Nico to be canon. However, with some symptoms being specific to just CFS, I find it to be very fitting. 

Nico having CFS just makes sense to me, and because it makes sense, I think he’d be a good representation for people like me. 

First, I’d like to enlist and describe symptoms of CFS and how they feel for me. Every person’s experience with CFS is unique, as some people get all symptoms and some get only the “major” ones. 

☠ Lowered ability to do activities accompanied with fatigue.  CFS makes people experience fatigue intense enough to lower one’s ability to do much. Some people with CFS grow bed bound while some retain the ability to do activities, but need a long recharge period after. For some people, it’s hours or days while for others it’s longer. The length varies. 

☠ Fatigue that isn’t resolved by sleep.  While short naps aren’t going to make you feel worse, CFS fatigue isn’t resolved by sleep. People with CFS tend to pass out multiple times whenever fatigue hits, and it’s hard for us to stay awake. 

☠ Post-exertion malaise/fatigue.  This is one of the symptoms typical of specifically CFS that doesn’t overlap with conditions such as anemia. People with CFS get hit with fatigue after strenuous activities, and it doesn’t have to be an activity that is very energy consuming. For some of us, even standing up for too long might be malaise-inducing. 

☠ Sleep disturbances.  CFS affects one’s sleep in multiple ways. People with this condition tend to either have very poor sleep routine, wake up a lot at night, be unable to fall asleep or, on the contrary, have issues with constantly falling asleep. It depends on a person. 

☠ Unpredictable crashes/relapses of fatigue.  Fatigue in CFS comes on very suddenly. Sometimes it hits us during the day while sometimes we can have most of the day without getting fatigue and only have it hit at nighttime. Aside from being triggered with activity, CFS fatigue is fairly random. 

☠ Feeling dizzy, not thinking properly, having brain fog.  CFS is a complicated disorder that manifests neurologically, alongside other physiological manifestations. Because of that, it can cause brain fog, typical of other nerve disorders. It tends to lead to us thinking with difficulty and needing more time to process information. 

☠ Memory problems.  Alongside brain fog, CFS tends to affect our memory capacities. People with this condition often have issues remembering things, and some of us might even develop short-term memory loss. It isn’t a symptom that’s present in all of us, but, again, a common one. 

☠ Shortness of breath, irregular heartbeat.  CFS causes a lot of us to be out of breath after activities that are too strenuous for our bodies, or have unusually fast heartbeat whenever we experience a flare-up. Under this condition, the heartbeat and breathing abnormalities are way more intense than those in people without CFS doing intense exercises or heavily strenuous tasks. 

☠ Rare symptoms: rashes, weight changes, seizures, infections, canker sores, allergies.  These symptoms are self-explanatory. They are fairly rare in people with CFS, but they can’t be dismissed as possible comorbidities. 

Examples & Commentary:  "I don't sleep too well...", "...managed to put all the dead to sleep but nearly passed out himself...", "...the more Nico did it, the more tired he seemed...", "...tired . . . couldn't summon a dog bone...", "...great need to take a nap, Wake me up later.", etc. 

There are more examples within the books that I couldn’t present because it’d include quoting or retelling whole chapters or paragraphs of text.  Nico is canonly portrayed as someone who fits the blueprint for CFS. He has very low energy and is often shown tired and exhausted - more so than any other character. He is seen growing tired after using his powers, which seems to be a strenuous task for him. While other characters are depicted growing tired after excessive physical exercise, Nico is the only one who’s shown passing out or nearly passing out after using his powers. He’s been shown getting short of breath after shadow-travelling, too. Memory issues and problems thinking are something that was also shown in his appearances. He suffers from chronic nightmares and sleep disturbances where he has trouble falling asleep and constantly needs to nap. It gets so bad that Will has to carry a travel pillow for him.

Additionally, Nico is shown to need sugary snacks after some of his travels, which might point out to him getting hypoglycemic, which is a common CFS comorbidity. 

[brckensociety]

pinned post (last update 5.5.24) 

hello my beautiful lovelies! i’m zoe (she/they, 27) the writer of brckensociety!

this post is for quick links for mobile users along with updates relating to me and what’s going on irl and on the blog! hope you’re having a great day and i look forward to any interactions we may have! note: please read rules before interacting or messaging me. i do not rp anywhere but tumblr. I DO NOT RP ON DISCORD.

quick links

muses (mobile version) | rules | wanted opposites | open starters

scream and angel/demon muses!

to find further background to the scream muses as a while along with the specific lore my new angel and demon muses follow please visit here.

important info:

my rules are super important to me, especially the second section "female vs male muses" please read them before interacting as not doing so can result in blocking.

life/blog updates

currently this blog is on a fluctuating semi-hiatus due to my mental and physical health being very up and down (and super unpredictable). i will be getting on as often as i feel capable, some days will be better than others but i may take longer to reply than normal and may disappear for multiple days at a time! if you want to drop a thread because of waiting or whatever just let me know. also, if i haven’t replied for 2+ weeks and i’ve been active feel free to check up with me on if i saw the thread with tumblr hiding replies and all, but firstly, check my rules, specifically the 2 week hold rule under "female vs male muses" as that could be the reason i haven’t responded to specific threads. update 28.8.23: my brain disorder is playing up again and making my brain fog worse, so activity will be all over the place and it’s likely i may prioritise threads that i have higher muse for when my brain is feeling up to replying and all. please, be patient and if you want to drop threads just tell me. it sucks when i push myself to reply and never get a response because mine took too long. just tell me so i don’t waste my time. for a detailed update of the situation go to this post here. (don’t feel obligated to, but if you want to understand to some deeper extent what kind of shit show is going on, read the post). update: 5.5.24: this year has started of as a hellscape, with dental issues non-stop and my pain and fatigue flaring like crazy. i've been trying to get on when i can but the past two months have been extra difficult. i do plan on trying to get on again as my dental issues have at least seemed to be settled but please be patient with me and know i appreciate those who have waited for replies from me.

[your-krazy-uncle-bob]

When the original strain of COVID-19 arrived in spring 2020, a pandemic soon swept the country. 

By far most survived COVID. But hundreds of thousands did not. American deaths now number well over 1 million.

Amid the tragedy, there initially was some hope that the pernicious effects of the disease would all disappear upon recovery among the nearly 99 percent who survived the initial infection. 

Vaccinations by late 2020 were promised to end the pandemic for good. But they did not. New mutant strains, while more infectious, were said to be less lethal, thus supposedly resulting in spreading natural immunity while causing fewer deaths from infection. 

But that too was not quite so. 

Instead, sometimes the original symptoms, sometimes frightening new ones, not only lingered after the acute phase, but were of increased morbidity. 

Now two-and-a-half years after the onset of the pandemic, there may be more than 20 million Americans who have had or are still suffering from what is currently known as “long COVID”—a less acute version but one ultimately as debilitating.

Some pessimistic analyses suggest well over 4 million once-active Americans are now disabled from this often-ignored pandemic and out of the workforce. 

Perhaps 10-30 percent of those originally infected with COVID-19 have some lingering symptoms six months to a year after the initial infection. And they are quite physically sick, desperate to get well, and certainly not crazy.

So far, no government Marshall plan exists to cure long COVID. 

While we know the nature of the virus well by now, no one fathoms what causes long COVID’s overwhelming fatigue, flu-like symptoms, neuralgic impairment, cardiac and pulmonary damage, and an array of eerie problems from extended loss of taste and smell to vertigo, neuropathy, and “brain fog.”

“Post-viral fatigue” has long been known to doctors. Many who get the flu or other viruses like mononucleosis sometimes take weeks or even months to recover after the initial acute symptoms retire. 

But no one knows why long COVID often seems to last far longer and with more disability.

Is its persistence due to one theory that SARS-CoV-2 is a uniquely insidious, engineered virus? Or do vaccines and antivirals only help to curb infection, while possibly encouraging more unpredictable mutations?

Who gets long COVID, and why and how is, to paraphrase Winston Churchill, “a riddle, wrapped in a mystery, inside an enigma.” 

Those who nearly die from acute COVID-19 can descend into long COVID. But then again so can those with minimal or few initial acute symptoms. 

The obese with comorbidities are prone to long COVID, but triathletes and marathon runners are, too. 

The elderly, the mature, the middle-aged, adolescents and children can all get long COVID. Those with downregulated and impaired immune systems fight long COVID. But then again so do those with upregulated and prior robust immunity, as well as people with severe allergies. 

Since early 2020, no one has deciphered the cause, although numerous Nobel Prizes await anyone who unlocks its mysteries. 

Does a weakened but not vanquished SARS-CoV-2 virus hide out and linger, causing an unending immune response that sickens patients? 

Or does COVID-19 so weaken some long-haulers to the degree that old viruses, long in remission, suddenly flare up again, sickening the host with an unending case, of say, mononucleosis? 

Or is the problem autoimmunity? 

Is there something unique to the nature of COVID-19 that damages the vital on-and-off buttons of the immune system, causing the body to become stuck in overdrive, as it needlessly sends out its own poisons against itself?

Without knowledge of what explains long COVID, it is hard for researchers to find a cure. 

After all, is the answer to slow down the immune system to dampen the immune storm, or to enhance it to root out lingering viruses? 

Do more vaccines help or worsen long COVID? 

Is the solution some magical new drug, or discovering off-label uses of old, reliable medicines? Can a good diet, moderate exercise and patience finally wear out long COVID? Or is its course too unpredictable or near permanent and chronic?

Is long COVID a single phenomenon, or a cluster of maladies, each manifesting according to one’s own genetic makeup, particular history of past illness, and unique reaction to the initial infection?

If we have few answers, we do have an idea about the costs.

Long COVID may be one of many reasons why in a recession, labor paradoxically still remains scarce. Millions likely stay home in utter disbelief that they are still battling long COVID. Others isolate in deadly fear of getting either the acute or chronic form of the illness. 

The social costs to America of this hidden pandemic in lost wages and productivity, family and work disruption, and expensive medical care are unknown. 

But they are likely enormous, still growing—and mostly ignored.

There should be some penalty imposed on whoever funded or performed the research that let this bug out of the bag. Why the hell is the government investigating J6 instead of the origins of COVID. The only obvious answer is that they already know.

YKUB

[fuck-abled-people]

I have a handful of autoimmune conditions that, y'know, make life hard to live. I'm grateful right now that my entire company works from home but even 40 hrs a week cushy desk job feels like too much. I'm so tired and I feel like if I just had more time I could be taking better care of my body. The flare-ups, the brain fog, the aches and pains, the fatigue all make life so unpredictable.

My work place is fairly progressive and I could drop to 32 hrs a week (with a drop in pay) but I'm SO worried. What if my management thinks less of me, or sees a drop in productivity? What if this leads to getting passed over for promotions? How do I measure the (doable) loss of income against gaining more time? How long can I stick this out?

Hang in there. I wish I had actual advice, but all I can do is offer you a digital hug.

[queerfictionwriter]

On Standard Writing Advice

I might’ve ranted about this before, but this is my blog and I’ll be unhinged as much as I like. So much of the writing advice I see comes from a blatantly abled and ableist perspective that I roll my eyes and scroll past it while gnashing my teeth and, sometimes, resisting the urge to scream. It’s not applicable to me, or people like me, so I won’t reblog it and increase its’ reach. But having to see it all the time is infuriating and

Because advice like “write every day!” or “set a routine and stick to it!” ignores the realities of having unpredictable health. You can’t write four days a week when, at any moment, your body might pull rank and leave you bedridden in a flare, or insensate with pain, brain fog, or a migraine, or when all of your plans for the week are thrown into disarray by a sudden doctor’s appointment, or an emergency trip to the hospital or your pain management provider. You do the best you can, obviously, but when that’s your reality, it’s frighteningly easy for goals and targets to become weapons of self-flagellation for factors beyond your control.

The valorizing of routine and steady progress also ignores the unpredictability of minds that cope with mental illness and other forms of neurodivergency. There are days where, no matter what was on the to do list, fuck all is getting done because you’re out of spoons or didn’t sleep, because you’re dealing with a dissociation or med change/adjustment, because all available mental energy has been diverted to basic self-care or Not Spiralling or coping with a trigger. Sometimes there are just Bad Days.

And that’s not even mentioning the fact that basically every disability and chronic condition comes with “chronic fatigue” as a symptom, and creative work is, in fact, work and requires energy no matter how important or rewarding it is to us. and it would be easy and defeatist and ableist to just shrug and assume that disabled people should give up, that it’s too hard, that it’s not worth it. Or to assume that we don’t have anything to say, nothing worth listening to, that our art and writing doesn’t matter, that we should let go of our dreams and goals because it would be “easier”, somehow. and of course this attitude contributes to the whole “i could never live that way” nonsense that gets thrown at disabled people all the time, but that’s a rant for another day

In these situations, you have to be a particular mix of ambitious and relaxed, determined and forgiving, because you have to want to be creative enough to persist, despite the obstacles, and practise enough self-kindness that you don’t overextend yourself because you pushed too hard, or crucify yourself for failing to meet the target you set for yourself. And that is why the advice that I give to all writers, but that I especially the ones with health challenges is:

1) Learn to trust yourself. This one is maybe the hardest thing to do as a creative, but it’s so, so important, because so much of your creative work gets easier once you trust yourself--to tell the story, to know your limits, to finish eventually even if it feels like it’s taking forever.

2) Learn to listen to yourself. What are your instincts telling you--about this scene, this character, this story, this trope? What is your gut feeling about where you’re at and what you’re capable of today? Is today a day to try, to rest, or to push?

3) Don’t be afraid to suck. We all start somewhere, and there’s no shame in being bad at things, especially things that you were never taught--we’re never done growing and learning and experiencing new things. The important bit about the sucking phase is not giving up--because you can push through it until you’re out the other side with new skills and greater mastery over your craft.

4) Cultivate a healthy relationship with feedback. Not everything you create is going to be for every single person. It’s okay to have a target audience in mind. And, when that happens? You have to let the negative opinions of people who aren’t in that target audience roll off your back, because you will never make everyone happy. One story--or even the collective work of one person--can never be all things to all people. Representation is a team sport. That said, though? It’s worthwhile to cultivate feedback from people that you trust--to understand your intentions, and to be honest with you. We all have blind spots about our own work, because we’re all human. Having someone you trust to point out those blind spots is incredibly valuable, but it’s also okay to be picky about who you choose to take that feedback from.

5) Write for yourself. Do it because you love it--because you love to write, because you love the topic or the characters, because this is your niche interest. Write with love and it will bring your words to life for your readers, in addition to making the overall process more enjoyable for you. (It also helps in letting the haters’ opinions roll, because if you love it, everyone else’s opinion matters a little less.) If you’re just writing it--whatever “it” is, a story or trope or particular plot or character interpretation--because of some notion of “should” or “tradition”, rules or social pressure, that half-heartedness will translate for readers. The words will feel lacklustre.

[lisacatherwood]

Me and M.E.

The Horror

Fatigue as a word doesn’t begin to describe the horror that they casually call Chronic Fatigue Syndrome or M.E. - Myalgic Enephalo Myelitis

I was 14 in 1980 when I contracted a virus known then as glandular fever. I was seriously less than chuffed… I was an 800 meter runner. I was a member of my town swimming club, doing competitive swimming and planning to do scuba diving training (I desperately wanted to be a Marine Biologist). I played hockey and went on my bike to the athletics club on a Saturday. I had a lot to do, but I had friends who had had the illness, a cousin who had been very ill and had had a long recovery over some weeks, so we knew what to expect, and I wasn’t too worried.

I had a high fever and then a low grade fever and felt really rotten and it simply didn’t go away. It’s such a simple thing to write down but the reality was and is horrific for my family as well as for me.

I was finally diagnosed with M.E. (myalgic encephalomyelitis) when I was 22 years old. In the intervening time I had had nearly two years off school. I got O’ levels, at 16, doing two year’s work in a year but was then so poorly during my 6th form that I largely blew my ‘A’ Levels at 18. I spent some time in the metabolic unit at my local hospital as they tried to work out what was wrong, with no success. It was frightening and disappointing for me, and for my family. I was so exhausted, confused and miserable that I couldn’t even fill in the university applications never mind thinking of packing and going.

A pattern developed which has persisted until now, forty years later. I would start to rebuild my life out of the illness and then catch a bug or even just overdo it a little and be destroyed by it. The illness seems to be something to do with a defunct immune system. Some bugs, colds, flus etc. I catch and get over the same as other people, some I catch and it’s like my immunity fails. I can’t get rid of the bug and the symptoms persist for months and months. In my body it feels like the immunity starts to triumph in one part of the system, but is overwhelmed in others. Like chasing dry rot round an old house. The painful joints start to feel better and then it flares in my digestive system and I have nausea and other digestive symptoms. Or the headaches die away and I feel so physically weak, I can’t stand steadily, lift a kettle, turn a tap on, hold a pen. Not just tired, but sore and stiff and lacking control. I have had long periods of being incredibly fatigued cold and hungry. Mind numb, sluggish forgetful, time concertinas, days, weeks pass in weird disjointed forms, sometimes I can barely speak. Summer days spent in low light indoors with two duvets and a hot water bottle, the central heating on, the fire lit, still freezing cold.

Every year or two Something happens which knocks me down into bed for months, sometimes years. After the initial sickness illness the convalescence is unending. I have described it as being like the worst flu and hangover you have ever had combined and lasting for months – the problem with this description is that I don’t think it really explains it, people don’t really remember what that level of awfulness feels like. The brain has a gift for not really storing the memory of physical symptoms – pain discomfort etc. We remember as an intellectual exercise not as a visceral experience. Even if you can vaguely put together a sensation of what that might be like it doesn’t really scratch the surface. (Try thinking of what a strawberry tastes like – really imagine it, hard as you can. Now eat a strawberry. See?)

The terror of finding you can’t roll over in bed on your own, the humiliation of having to have your personal care taken care of by someone else, the days when all the radios in the world are on in your head, all light is too bright, all sound is too intense, the indignity of being questioned like a criminal in benefits offices and doctors surgeries. I think I can now write openly about all of this because I have nothing left to lose.

I think I had always tried to hide the damage the illness does particularly to my mind because I was afraid of a diagnosis of mental illness. I had an acquaintance who had the same symptoms as me when we were in our twenties, she ended up on a ward in our local mental hospital. They took her drawing materials away from her. They wouldn’t let her write. I fear this kind of thing more than anything.

I have not been idle. I have not been a scrounger. I have a tiny website design business. I work as much as I can always from home and now employ two people part time. I am a self taught artist and designer and love my work when I can do it and I do it as much as I can. Just at the moment that isn’t very much. But I live in hope.

I don’t have any children. We sat down and thought about it. It seemed that to bring a child into a house where their mother could spend long periods unable to look after them was a bad thing to do. We made the choice some years ago and given how my health has been subsequently we were right. We made an adult choice and we live with that every day. It doesn’t mean it wasn’t and isn’t painful. I say 'we' but my marriage broke up after 23 years due in no small part to the effect of my illness. When we married I was 25 and the prognosis was that the illness would lessen and in at worst 7 years it would be gone. I'd grow out of it.

I am writing now because I feel awful, my hands ache the tears of weariness and anguish are running down my face. The brain fog is ghastly and I feel so alone and isolated. My next major birthday I am 54. I have not learned to scuba dive. I didn’t become a marine biologist. In some ways it would not be over dramatic to say this illness has ruined my life. Certainly it has ruled it, changed it, made it unpredictable, difficult, at times nearly unbearable.

I saw a child on the TV the other night, recently diagnosed with ME/CFS, he is lying there, another little grey shape in a bed (we all go that way) and I saw the desperation in his mother and recognised myself and my mother. The silent scream of horror I had at seeing it all happening again was from the depths of my being.

That the scream was silent is partly because I don’t have the strength to scream and partly because I have no words. It is not just me – the English Language has not got the words.

I had a really bad flare which put me in hospital unable to walk in Oct 2018 and I’m still housebound/bedbound dealing with the consequences. Applied for disability benefit got a home visit and didn’t score a single point even after 40 years I am not believed. Too ill to fight for it and terrified about the future. My incredible Mum stepped in again to take care of me when this latest flare happened. I have no words to express my combined gratitude and shame for being this kind of endlessly needy daughter. l when, at this age I should be taking care of her.

Originally Written September 2012.

Header Artwork originally by me aged 15.

Added to in 2015 after my marriage broke up.

Updated July 2018 and again Feb 2020 for #MEAwarenesshour on Twitter every Wednesday share relevant content with the hashtag to help raise awareness.

Reposted July 2020 to send to @OxMEDiscovery

[gogh-save-the-bees]

Fibromyalgia Masterpost

As someone who has struggled with severe chronic and pain fatigue for over a decade and have recently been diagnosed with Fibromyalgia - I have decided to research my condition amd educate myself on my symptoms.

Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body. As well as widespread pain, people with fibromyalgia may also have: increased sensitivity to pain. fatigue (extreme tiredness) muscle stiffness.

Through my own research i have learned that many difficulties i have are directly linked to Fibromyalgia. There are over 200+ symptoms and while not everyone will expereince all of them, we experience our own combonation of debilitating symptoms.

With anything, education is key.

If you have fibromyalgia, have a family member or friend with the condition or would like to be more educated on the condition this post can help.

Disclaimer: I am not a medical professional and do not claim to know everything about fibromyalgia. This post will not list everything so i urge you to do your own research. And if you have any of these symptoms, go to your doctor!

Symptoms (most common)

All over pain is the most common symptom of fibromyalgia but the syndrome causes many others. Extreme fatigue , trouble sleeping and feeling stiff and achy. Your ability to think and make decisions can be affected (this is known as fibro-fog).

As well as widespread pain, your muscles can be very tight and knotted. They can be painful to touch and they radiate pain to other areas - these firm knots are myofascial trigger points. (These knots are commonly used to diagnose fibromyalgia in a physical pressure point exam)

Other Symptoms

Cold feet and hands

Feeling cold often/feeling hot often

Heart palpitations

Craving carbohydrates

Symptoms worsened by temperature changes

Unexplained weight gain or loss

Joint pain

Feeling spaced out

Restless Leg Syndrome

Noise intolerance

Scalp Pain (like hair being pulled out)

Sensation that you might faint/ Syncope (fainting)

Tinnitus (ringing in one or both ears)

Photophobia (sensitivity to light)

“Growing” pains that don’t go away once you are done growing

Transposition (reversal) of numbers, words and/or letters when you speak

Difficulty with long-term memory/and short-term momory

Difficulty following conversation (especially if background noise present)

Difficulty expressing ideas in words

Blind spots in vision

Eye pain

Excessive sleeping

Difficulty falling asleep/ Difficulty staying asleep

Difficulty balancing

Vivid or disturbing dreams/nightmares

Sensitivity to the sun

Bruising easily

Sensory overload

Allodynia (hypersensitive to touch)

Menstrual problems

Suicidal thoughts

Irritability

Abrupt and/or unpredictable mood swings

Frequent crying

Diagnosis, Medical Help and Treatment

If you think you or someone you know has fibromyalgia go see your doctor. Tell them about your symptoms and explain that you think it might be fibromyalgia. Keep in mind that a diagnosis can take time and you have to be persistant and in many cases fight for your diagnosis!

Common treatment involves pain medication, anti-depressants, physiotherapy and therapy (CBT and pain managment).

Self Help

The most common coping technique for chronic pain is breathing exercises and meditation. Try the following,

Put yourself in a relaxed, reclined position in a dark/or low-light room. You can shut your eyes or focus on a point.

Begin to slow down your breathing. Breathe in deeply, using your chest. If you find your mind wandering or you are distracted, then think of a word, such as the word "Relax," and think it in time with your breathing...the syllable "re" as you breathe in and "lax" as you breathe out.

Do this for 2 to 3 minutes or until you feel relaxed.

Now that you feel yourself slowing down, you can try to use imagery techniques, like the ones below.

Positive imagery

Focus your attention on a pleasant place that you can imagine going to - the beach, mountains, a place where you feel safe and relaxed.

Positive self-talk

Encourage yourself and tell yourself: I can do this, I am strong and capable. Find a positive coping statement or affirmation that works for you (even if you don't believe it at first!). Write it down and memorise it for when you need it.

Counting

Counting is a good way to deal with painful episodes. You can count aloud or in your head. You can count breaths, the number of yellow items in your room, the floor tiles, or even visualise some sheep and count them!

Grounding techniques

Look around you, what do you see, hear, smell, sense? Say aloud (or in your head):

5 things you can see? 4 things that you can touch? 3 things you can feel? 2 thing you can smell?

It can also be helpful to use sensory items like plushies, fidgets, slime, and more! Anything that brings you comfort or joy or relaxation.

Pamper yourself

Do something you really enjoy, or do something relaxing like a bubble bath!

Mindfullness Box

Make a box of items that remind you to use the techniques that help, or put photos on paper, or write and decorate a list. (This box can be filled with items to help with depressive episodes)

The daily fight with fibromyalgia goes beyond pain management and fatigue and it's important to be educated on all aspects of the condition.(Especially if you or someone you care for has a diagnosis)

What are the facts

Fibromyalgia is a neurological illness and involves neurotransmitters (chemical messengers in the brain) that are also involved in some mental illness. This means that depression and anxiety are common overlapping conditions in fibromyalgia.

Stress is a major exacerbating factor in many, if not most, cases of fibromyalgia. It's suspected as a causal factor and known to make symptoms worse and cause flare-ups.

It is also believed that childhood trauma may alter the body's physiological stress response leading to illness later in life.

Looking after your mental health is just as important as physical treatments when treating fibromyalgia. (I should state that fibromyalgia is a chronic illness and that there is no cure for the condition.)

When it comes to fibromyalgia patients seeking mental health help it's not much different from someone without the condition seeking similar help.

The major difference would be around pain managment and the emotional distress that comes with daily pain and the inability to live a normal life. It's common for fibromyalgia sufferers to feel hopless/helpless and worthless alongsides feelings of frustration.

It is believed that depressive episodes, mood swings, suicidal thoughts and suicidal attempts are all symptoms of fibromyalgia and it is very common for fibro-sufferes to struggle severly with poor mental health.

Treatments such as anti-depressants, anxiety medications and therapy are commonly suggested alongsides pain medications. Both help the other as stress and low mood decrease our ability to cope with pain.

Mental Health Techniques

Keep a mood diary

This will help you keep track of any changes in your mood, and you might find that you have more good days than you think. It can also help you notice if any activities, places or people make you feel better or worse.

Connect with people

A good support network will always be a good thing. Having people you can reach out to when in distress is a important part of recovery and having good mental health.

Take control

If the problem has a solution, make it happen! Don't let thoughts like "i cant do anything" hold you back as they only add to the problem. But,

Accept the things you can't change

Changing a difficult situation isn't always possible. Especially when you have a disability. Instead, try to concentrate on the things you do have control over.

Try to be positive

Look for the positives in life, and things for which you're grateful. Challenge thoughts like "I can't do this" or "there's no point" or anytype of thoughts which are negative and defeatist. They won't help, chuck them out!

TIP: Try writing down 3 things that went well, or for which you're grateful, at the end of every day.

Work smarter

What i mean is, some tasks are more important than other. As someone with a chronic illness it's not always, if at all possible to do more than one task a day. Often we are forced to choose between making food or cleaning and we have to learn to prioritise based on a number of factors. Don't feel bad when you can't do a lot or even anything, your pain and illness is valid and the last thing you need is to feel guilty about something you can't control.

If you have to choose between washing the dishes or preventing a flare up - your health wins everytime.

Diet, sleep and exercise...

It can be frustrating we all you hear is "you should exercise, eat healthy and have a good sleep routine..." and somehow people think that this will heal us. This is not the case.

Yes, a healthy diet, sleep schedule and light exercise is good for us but it's not as easy for us to achieve. There are many factors that make access to these difficult (poverty being the big one). But, lets ignore that for now (like everyone else does).

Okay, lets say we eat a healthy diet. We can't always follow a sleep routine because we have severe pain that is generally worse at night. We also struggle with other symptoms that are more prominant at night (restless leg syndrome, heat intolerence, twitching, nightmares...) that make getting to sleep and staying asleep very difficult. And, exercise is the hardest of them all. We cant go to the gym and get our sweat on. It's not in the cards. Every chronically ill person has been told to eat healthier, sleep better and exercise and it's not helpful. In fact, it only adds to our stress. If you don't know what you're talking about (e.g. you suffer from a similar chronic illness or are a medical professional) then shut up!

Excerise when you can. Don't excert yourself. Swimming is one of the best options. Eat as healthy as you can (but any food is better than nothing) and try your best to keep a sleep routine. But don't stress when these things arent possible, they won't cure you, they will only help you decrease your symptoms and make them more managable.

This has been a long post, congradulation on making it to the end! I hope this post has been educational and helpful in some way or another. Feel free, encouraged even, to reach out to me with any questions, i am happy to amswer any to the best of my ability. Please reblog this post so other fibromyalgia sufferes can have a read and add to the post if they wish.

I would also like to add that i am looking for fellow spoonies to follow on here and instagram (@gogh_save_the_bees) give me a follow and ill do that back!

[ultratesterthings]

How to Cope When Chronic Pain Affects Friends, Family & Social Life | The Princess in the Tower

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When our lives have been so devastatingly altered by chronic pain and illness, with not a single facet untouched, the support we receive from friends and family becomes all the more essential. But one of the many ironies of a life with chronic pain is that at the very time you need the love and support of those you care for most, those relationships are so often challenged and affected by the same cause of that need.

In the recent pain support survey that so many of you kindly did (*enormous thank you* ~ you can still find the survey here), many report that one of the greatest obstacles is not with our bodies but in relations with those closest to us. Our friendships and connections with family can make the difference between coping or finding ourselves feeling entirely misunderstood, isolated in our pain, by some, even judged for it.

Dealing with this on top of the symptoms can naturally be devastating for pain patients. Yet the lessons of living in pain run deep, and even the darkest times can be illuminated by the slenderest light. This post focuses on the effect of pain on our relations with others and offers a few tips on how to cope.

Changing Relationships

“Chronic illness throws a monkey wrench into our relationships,” says Susan Milstrey Wells, author of A Delicate Balance: Living Successfully With Chronic Illness. “We may seem as foreign to the people who love us as if we had begun speaking a different language. Our family and friends still want us to be the mum who works, the dad who plays baseball in the backyard, and the friend who meets them for lunch.”

“In turn, we want to be treated as the same loving spouse, parent, and friend we always have been. A large part of the responsibility for making those relationships work falls to us. We have to educate our family and friends about our disease, allow them to express their emotions openly, and clearly state our limits and our needs. Also, we have to expect these changes to be unsettling.”

Chronic Pain and Socialising

Planning a social life around chronic pain and illness is hugely frustrating for everyone involved and – for those who are not in it for the long haul – can be swift to dissolve friendships. If you’ve ever known someone who keeps on saying that they want to catch up but never commits, or a friend who is constantly cancelling on you at the last minute, you know how frustrating that flakiness is.

Yet in our ever-erratic, unpredictable illness, our chronic pain can make us mimic that flaky friend to perfection.  “On the one hand, we don’t want to over-commit to others and then have to cancel. On the other hand, we don’t want to unnecessarily isolate ourselves too much,” says patient, advocate and author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, Toni Bernhard.

“This constant need to assess what’s best for us to do is hard and exhausting work. In the end, because of the uncertainty of our symptoms, most of us must simply make an educated guess and hope for the best.”

Never Knowing How We’ll Feel

The ongoing uncertainty about how we’ll feel each day makes planning impossible. “It’s hard to make plans because we can’t be sure how sick we’ll feel or how much pain we’ll be in on any given day. Even after I’ve woken up, I don’t know how I’ll feel as the day progresses because my symptoms can flare at any moment,” says Toni Bernhard.

“In addition, resting for days in advance of a commitment doesn’t assure that I’ll feel okay when the day arrives. It took me a long time to even be able to begin to make peace with the uncertainty of my symptoms. It’s an ongoing challenge, that’s for sure.” Some pain patients also feel that others expect too much from them, so believe they are letting them down in some way if they can’t keep up, which leads to more unhelpful thoughts.

Cancelling at the Last Minute

Just as others are perplexed by the fluctuation in symptoms, especially the speed with which a flare can transform us from being happy and engaged with someone, to collapsing in a voiceless heap, we too are equally perplexed. We can do everything within our power and planning to see our loved-ones but there are times when it simply does not help, or the pain flares so viciously, we are entirely powerless in controlling it.

Only you know which decisions to make to best manage your symptoms. If you are unable to do something or have to change plans you’ve made with friends, it’s important to communicate this but don’t feel obligated to give long explanations or grand apologies, though I know that is natural. We obviously feel bad, sad, and upset but the subsequent guilt at letting another down will only serve to depress you.

One Event = Whole Day’s Preparation

A single event, such as seeing a loved-one means our entire day is built around that event. From waking-up, everything is considered and for many of us, we cannot do anything we want to before the event as it jeopardises it. So when we do have to cancel, it’s not just the event but an entire day wasted, us in pain, yet we were never able to even see that friend. This is frequently ignored, especially by those who get annoyed at us for being in pain and needing to cancel.

It’s complicated as we long to socialise, to see those we love but the depth of understanding needed to truly comprehend the constant evaluation, uncertainty and ongoing management of our pain, is only grasped by a select few. These friends are perhaps the finest of all as they do not get angry or feel put out if we must cancel at the eleventh hour, nor do they mind it if our plans are cut short because they understand that we are doing everything we can. It just doesn’t always go to plan.

When you look perfectly healthy but cannot participate in activities such as a short walk with friends or a party, explaining why is often difficult and always tiring. We naturally become exhausted explaining over and over why we cannot partake.

It also breaks our hearts when we keep having to explain that we’re not able to do something that we would truly love to, even if it was ‘just’ a walk with friends or a drive in the countryside. Though of course there is no ‘just’ about it when for the most part, you are stuck indoors because of your pain and illness.

Living with chronic pain and illness involves a constant evaluation of the impact that various activities might have on our pain, fatigue, and other symptoms. This painstaking (pardon the terrible pun), and meticulous pacing often requires difficult choices about whether or not to engage in an activity that others do without a second thought.

Not Knowing How to Act Around Pain

“We may lose friends because we can no longer share a sport or hobby with them, or because we don’t seem to be as much fun as we used to be,” says Susan Milstrey Wells. “Sometimes our friends just don’t know how to act around us when we are ill.”

Being so misunderstood by loved ones and losing the intimacy once shared in formally close friendships naturally hurts. Human beings are social creatures. Our sense of who we are and our place in the world is forever influenced and redefined by the nature and quality of our interactions and relations with others. Yet chronic illness inevitably changes relationships.

Sensory Overwhelm and Brain Fog

Another aspect of socialising with pain that becomes difficult, even impossible is trying to interact when the pain rises because of sensory overload and makes it impossible to think. The more people in the room the greater the stimulus on your nervous system, and consequently, your pain.

While you are trying to listen, engage, think of your responses too, any additional noise, people, and especially music can make brain fog and sensory overload exacerbate, making it painful physically and emotionally. The desire to have and maintain closeness in friendship and family is sadly made all the more impossible because of the very symptoms that thwart it.

Many pain patients, especially those with severe pain conditions that mostly leave them house-bound, naturally struggle to see, speak to, or socialise anything close to what we long to. Though it’s humble compensation, when we do connect, it does make it all the more wonderful, Skype too, is a beautiful means for those with pain to see their friends and chat.

Being Treated Differently

When you have an illness that is so hard for others to understand, others may treat you differently. Even those who fully support us can change in how they relate to us. We want to be treated as whole people, and adults, not ’the one with pain’ but may be treated like shadows of our former self, exclusively defined by our pain or illness, or worse as dependant children.

“I’ve had people talk to me as if I’m a child. There’s a word for this frustrating phenomenon: infantilization. The unpredictability of how we’ll be treated by others can be extremely stressful,” says Toni Bernhard. “Will they understand that chronic illness hasn’t turned us into children? Will they speak to us in a pitying voice? Will they shy away from meaningful interaction altogether, as if we’re contagious?”

Toni offers two strategies for handling this particular uncertainty: “First, I reflect on how even well-intentioned people may behave unskillfully for reasons related to their particular life history and their cultural conditioning. This helps me not to take their behavior personally. Second, I remind myself that, despite this illness, I know in my heart that I’m a whole and complete person; then I re-commit to making sure that’s good enough for me.”

Talking About Our Pain

If we talk about our health problems, loved-ones may respond judgmentally yet in keeping quiet about our health issues, or the severity of the pain and symptoms, perhaps even acting ‘healthy’, we risk leading others to misunderstand what we can and cannot do. Additionally, by keeping quiet, we’re also passing up the possibility of receiving much-needed support, emotional and practical.

“How much you talk about your pain and other difficulties is a personal matter, affected by your personality, the situation, your culture, and the personalities and cultures of others in your life,” says Lynette Menefee Puiol, Ph.D. “For example, some friends might think it is not polite to ask how you are doing, while others think that not asking indicates that they don’t care.”

“There is a delicate balance between sharing enough so people will understand, and knowing that talking about your pain has a negative effect on relationships,” adds Lynette, who suggests having a ‘script’ prepared when you don’t want to say much, such as, “I don’t like to discuss the details, but thanks for your concern.” Instead of talking, some pain patients use a sign or a number system to communicate when pain flares-up or it is particularly difficult to speak.

Exceeding Limitations

The nature of invisible illness and our fluctuating symptoms can lead to an equally fluctuating level of support. Since others cannot see our pain, sometimes even those closest to us find it hard to believe that someone who looks healthy can have so many severe symptoms and limitations. We may be misunderstood or expected to exceed our limits by even those we love the most, no matter how much we explain that we cannot.

This of course is hurtful emotionally as well as physically if we do go over those limits. Yet sometimes even those we think understand show they do not. We might try to ‘keep up’ only to pay for it so dearly later but of course the flare-ups and recoveries are as hidden as our pain is. So that side of living in pain is also so vastly misunderstood, which can also affect friendships and relations with family.

Unpredictable Symptoms

Everyone with painful neurological conditions and invisible illness knows how tricky it is to manage our unpredictable symptoms and limitations but just as we struggle with it, our friends and family may think we are exaggerating our pain or mismanaging it, which may strain in turn friendships and relations with family.

Loved-ones who see us ‘able’ to carry out activities, though obviously oblivious to how painful these actually are, are then confused by our need to rest and recover, or allow that invisible pain to lessen. Oblivious to the pain involved, aftermath, or inability to repeat that activity, this creates doubt and may lead to their questioning of our pain, in turn affecting the closeness and connection in our relationships and friendships.

The swift climb from ‘normal’ pain to being entirely unable to speak because of a flare can also be perplexing to others. Of course not everyone reacts in this way. Some friendships are deepened through our illness and pain but if we are judged on something that is so out of our own control, it naturally makes us feel even more isolated, especially as the reality is so beyond the scope of our loved-ones’ own experience and therefore understanding.

Changing Needs, Changing Relationships

The world of the chronic pain patient, no matter the cause, shares the need to be understood. We don’t want pity but understanding. Not sympathy but empathy. When friends and family change how they respond to us it can make life with pain even more difficult. Even if initially our loved-ones respond with kindness and concern, that may change as time passes and we don’t ‘get better’.

Another way our relationships change is that we may rely on others in new ways, something that can be difficult to acknowledge even to ourselves, let alone in communicating those needs to others. We may feel embarrassed, flawed, or inadequate because of the pain. It’s natural to worry that others may be resentful of our needs because of disability and pain but that frequently leads to those needs not being met.

Compassion Fatigue

Sometimes our friends and family are there for us only to slacken that support when things don’t improve. They may become frustrated in their role if they are a caregiver or a family member, or simply misdirect their own feelings about your illness at you, which is always hard. Your friend you went out every week with is fed-up of waiting, or your family stops asking how you are.

When even those you thought supported you get compassion-fatigue, or grow a little clipped or angry at you ‘never getting better’, take comfort in your own inner strength and remember that new people do come into your life, online and in person, especially now with so many online support groups.

Distance from Illness and Pain

Watching a loved one struggle with pain often makes others feel helpless and uncomfortable. They may also be experiencing fear, disappointment and loss. These emotions can be powerful motivators. It hurts for us, of course it does, but denial can be their own means for coping, how ever hurtful that is to us. They may simply feel too uncomfortable to acknowledge our pain and ill-health.

Some reactions are also often complicated by feelings of guilt for being healthy and able to walk, run, get out, or simply unable to share aspects of their lives that they know you can now no longer be a part of. Remember that others have their own challenges and lives to lead, that everyone has their own battles to face but above all, keep in mind that others’ reactions usually have far more to do with them than with us.

Letting Go

I used to have a friend who was one of the kindest you could hope to meet. Yet when CRPS began, although the initial reaction was one of concern and compassion, the distance was evident. That grew to increasingly infrequent visits, until it became all too apparent that the pain made them too uncomfortable (as ironic as that sounds to us in pain). Their need to create distance was as they could not deal with it, and many people cannot. Illness, as perpetuated by our youth and health-adoring society, doesn’t sit well for many.

While some relationships are deepened by the challenges of chronic illness, we may need to accept that we must let others go. Letting go is a part of life but with chronic illness and pain that teaching acquires a whole new depth. Of course it hurts if someone you love leaves but for your sake, letting go is often the most healing action you can take. Just as our lives shift and evolve, we too change and grow, so do the people we share it with. Instead of focusing on the heartbreak of losing loved-ones to your chronic pain and mystifying illness, let go, have compassion for yourself, them too in letting go, and know that new friends do appear.

Self-Compassion

“Ultimately, as we strike a delicate balance between our own needs and the demands of our most important relationships, we grow in self-awareness, creativity, and acceptance,” says Susan Milstrey Wells. “We can’t be sick successfully without learning to love ourselves, and when we accept our own limitations, we’re much more likely to let those around us be less than perfect too.”

Self-compassion attains a whole new height when it comes to living with chronic pain and illness. We are so frequently hardest on ourselves, and when we lose those we love, all the harder. Sometimes that loss, that separation from friends we considered for life can lead us to this dark and lonely place.

Remember that you are doing your best, you are dealing with incredibly difficult circumstances so be kind to yourself. Speak to yourself as if you are a friend of yourself, without judgement, without criticism, without drama. Having self-compassion means to fully be with yourself in awareness, much like a good friend, with the willingness to be a loving companion to your own pain.

Self-compassion also brings care and concern for ourselves; warmth, love, and kindness for our challenges too. It’s a gentleness within you that permeates with acceptance, unconditional love and intimate understanding. As author and Eastern teacher, Jack cornfield said, “If your compassion does not include yourself, it is incomplete.”

Finding Friends in the Spoonie Community

One way to cope with the ongoing challenges is to make friends with others who truly understand those that you face, on a day-to-day, moment-to-moment basis. Finding others who are suffering with similar symptoms is nourishing and connecting with others who live with chronic pain can provide much comfort. Although they may have a very different illness or condition to your unique combination, they have the ability to be empathetic, encouraging, and a great source of support precisely because of their direct experience.

Yet just as the night is darkest before the dawn, so too can the sadness in our lives be lifted by new people who come into our lives. If you are reading this after being recently diagnosed and fear the loss of friends, take heart in the fact that so many new people will come into your life; brave, inspiring, beautiful, compassionate people.

Some feel their friendship circle actually expands after a diagnosis, or, perhaps more vitally, if you reach out to others in pain online, or in support groups. The capacity for human connection is something that even chronic illness and pain cannot take away.

Feel free to share your thoughts in the comments below or in the Guest Book. ♥

You can also sign-up to the Princess Post and receive a free Flare-Up Toolkit here:

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This content was originally published here.

[generalelectricllama]

Fibromyalgia

As I have stated before, I have many illnesses (both physical and mental). Fibromyalgia happens to be one of the more problem causing illnesses that I have. It is most common in the elderly. Or at least those over the age of 40. And there is no true test to give a definite diagnosis, which is why it can be very hard to near impossible for doctors to figure it out.

Fibromyalgia is said to be caused by many things, the most common being sudden traumatic events (such as car wrecks, which is how mine came to light), depression, and it has recently been found to be genetically inherited. There is, as of today, no known cure for this illness, just basically a bunch of medications to combat the symptoms of the illness and more medications to combat the side effects of the previous medications.

Fibromyalgia is a disorder characterized by widespread musculoskeletal (muscle and bone) pain accompanied by fatigue, sleep, memory, and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

Symptoms sometimes begin after a physical trauma (think car wreck or surgery), infection, or psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.

Basically, in simplified terms, fibromyalgia causes the nerves in your body that register pain to constantly or near constantly be firing, telling your brain that you are in pain or that something is hurting you. It generally causes all over pain, but can sometimes be in a specific area.

Fibromyalgia causes your brain to be constantly working, as it is constantly receiving pain signals from your pain receptors. One of the bigger symptoms or side effects of fibromyalgia is something those who suffer from it call “brain fog”. Your mind feels kind of foggy and you have trouble remembering recent events or even current conversations. It is your brain shutting down your short term memory because it is overworked.

Some of the worst symptoms of fibromyalgia I have are the fatigue, extreme sensitivity to cold or heat, and sensitive skin. Seriously. Sometimes it hurts just to wear clothing. 

I have had this illness since I was near 16, and I am now 22. It wasn’t until I was 20 that I finally got a diagnosis, after two very bad car wrecks and severe depression. Many doctors will not even try to perform the simple pressure point test that they can do on you to determine whether you may have it or not, as fibromyalgia and its symptoms are very hard to care for and require very much upkeep on medications and such.

Fibromyalgia can differ in severity from day to day and ever hour to hour. Some days I can get up and walk around the house and maybe cook me a small meal. Others I have to ask my grandfather to pull me out of my bed and walk with me holding me up for a bit. And then there are days where the only time I am able to get out of bed because of the pain is just to use the toilet and head straight back, usually with help from my grandfather walking to and from. The weather also effects the illness in many ways. If it is going to be cold or stormy outside, the pain will be worse and my joints will be stiff and hard to move around and may even throb or shoot stabbing pains through my body.

I have had to make many sacrifices in my life such as parking closer to the grocery store if I am going to be there for more than 10 minutes, giving up taking baths completely (I am too physically weak to get myself in and out of bathtubs, even with a bar attached to the wall to help me pull myself up), showering on a daily basis (showering on my worst days can have me bedridden for two-three days after), and going out often. Often times when I am out and about, I will do too much walking and it will cause a flare up and put me in the bed. 

It is a struggle every day to just remember the basic things like taking my medications and eating. The pain, weakness in my body, and foggy feeling in my mind causes me to forget alot of things and to have to cancel very often on my friends and family if we have events scheduled. It is beyond unpredictable.

I want to educate those of you that do not have illnesses or that have no one around you who knows what fibromyalgia is or what it can do to a person and their life. Fibromyalgia may be classified as invisible, but it is very visible if you know where to look. This illness, your pain, is very real. It is very valid. You are allowed to rest without feeling bad. Your health comes before the wants of others. I ask you, as a fellow person with fibromyalgia, to not feel bad for taking care of yourself.

Go out there if you can, and educate people. Every day new things are being discovered on fibromyalgia and its causes and symptoms. 

And remember, you are not alone. There are many of us warriors out there. Your illness(es) and pain are valid. It is not imaginary.

(If anyone has anything to add to this or to clarify, please do not hesitate to reblog it with the addition or clarification. I ask that you state it respectfully. I am out here to try and educate people on some of the many invisible illnesses that exist and to share the point of view of someone who has said illnesses. I am not trying to hate on or be specific to one specific illness. There will be more posts on other illnesses.)