Backyard is looking nice 💙

dealing with a fibro flare up right now cause of emotional trigger (and dehydration, I'm working on it.)

And just sitting here thinking how resentful I am towards my parents. They become obsessed with health once they started getting older. They will eat better and exercise. Good for them. Except now they act so annoying, particularly my mom. Unsolicited advice, no matter how many times I explain I can't do something cause of fatigue, having her experience a fraction of my symptoms and thinking she understands it. She had COVID about a year ago and had brain fog from it. She still fails to understand my brain fog. She talks about the way I eat and what I eat. Not only do I have to eat more and get hungrier easier + low blood sugar if I'm not careful about what I eat and if I'm eating when I'm hungry, but she tries to worry about what I'm eating (like saying "that's so many carbs") while simultaneously never giving a shit about other stuff I eat. It's like she picks and chooses when to be worried about my diet as if she also doesn't fail to notice when I don't eat and barely acknowledges my dietary needs. And every single day, it's asking if I've tried walking, how she thinks walking could be good for me. Great, fantastic. Except going outside is filled with delusions and illusions. I feel like an animal on edge if I even exist around other people.

I'm just sick of it so much. I'm sick of their obsession with health and fitness. Having to hear my dad say "I can't eat chips, I'm too fat as is" while not being fat at all and just saying that cause he's "eaten unhealthy" when I've had to do that most of my life cause my parents never cared about my diet and I have that eating disorder that makes it hard to eat things outside of safe foods related to my autism. Having to hear my dad being too embarrassed to carry a pizza inside in front of the neighbors. What the fuck does that say about me who is eating the pizza?

I can just feel my parents judging me for not doing much. Using it against me that I don't clean up after myself when that's 10% of the time cause I force myself to do it even when it's difficult. I'm sick of being expected to be functional. I'm sick of being ignored. I'm sick of their health obsession which leads to shaming me and acting so much more knowledgeable about stuff. "Have you tried this?" "Have you tried that?" Yes I have. I am still in pain. Actually shut up. "Well this helps me." Okay well yours isn't as deeply intertwined as mine is.

Not to mention, I actually do have issues that will be better by walking. My knee issues are definitely it sometimes. But I just cannot even do that some days. So it's all about which pain will win. Will it be my pain that requires movement and walking to feel better or will it be the fatigue and sickly aches keeping me in bed?

I'm so tired right now. Thanks to the fibro flare up I'm probably gonna be up till 5 or 6 am. When I was tired at 12 am. I hate external forces causing triggers to my emotional state which leads to a fibro flare up because my body can't handle anything anymore because I legitimately loved in survival mode and repressing my emotions for far too long.

You don't have to answer this if you don't want to, but you sometimes posted about fibro and do you have any tips on managing it? Because ow ow ow ow

I’m so sorry you’re going through this too Dx It really sucks (huge understatement). Here’s what I’ve found that can help:

Suggestions below the cut

For Pain:

Arnicare gel is a g-d send! Rub it into where your muscle or skin hurts and it can give at least some relief! Sometimes a whole lot!

Tiger/Eagle balm can also be used for sore muscles. Try a little at first if you’re not used to it and then slather that stuff on when you know you can handle it. It gets quite hot but helps a lot.

TENS machine. For those does when your back is just a mess of pain and muscle knots. Start on the lowest setting and work your way up.

Herbal heating pads. When combined with the tens machine before or after, the heat really helps soothe those messed up muscles.

Lidocaine patches. They work soooo well! Just slap one on where it hurts and leave it for up to 12 hours (unless stated otherwise on the box) and don’t put more than three on (unless stated otherwise on the box)

Kratom. It can have some bad side effects down the road, like hair loss if you end up getting addicted and taking a lot. Just monitor your intake and try and use it sparingly. It helps incredibly with fibro pain tho, stops it dead. I take it without issue, my sister became addicted. She takes it whenever she feels dysphoria, which is at least 20 times a day so… just don’t do that. Mix half a teaspoon into water and go from there, upping the dose by half a tea spoon each time if you’re not feeling the effects. In lower doses it can act as a stimulate so if that’s happening just up the dose until you get to a pain relief level. To potentiate the effects, mix in tumeric and lime juice and maybe even cayenne pepper to really make it work.

Soft fabric for when your skin feels like it’s burned.

NO TIGHT CLOTHING! This includes socks! Make sure everything is loose, at least for when you’re flaring up. Pressure equals pain, remember that.

Someone to massage muscle knots out. Have them use lotion or a massage oil if using their hands, if using tennis balls (which work great to get the knots out) you can skip that. They need to apply at least ten seconds of pressure to loosen the knot.

Cannabis. Whether it’s the real stuff or some legal knock off where you live, this has helped more than absolutely anything. Flower tends to work best for me, but edibles can help as well. Try the different products, give tinctures a try, and see what works best for you.

For stomach pain you can chew some Benadryl to numb your stomach to allow you to eat. Start with one and work up til you reach the numbing effects you need. Do not go over four 25 mg tablets.

A cane. Sometimes walking is just going to be painful no matter what we do. Using a cane, walker, or wheelchair can help immensely. The same goes for when we’re too tired to move. Don’t be afraid of what others will think of you! Fuck ‘em! I know it’s scary and occasionally someone might accuse you of faking, but this is not about them, it’s about making it through our day causing the least amount of damage to ourselves possible.

Memory foam mattress. Spring mattresses will create pressure spots across your body. It’s not called princess and the pea syndrome for no reason.

For fatigue:

Green tea. Caffeine can increase pain sensitivity so you have to be careful with this one. Have up to five cups a day. It can also kick start your metabolism which is good for us since it can be hard to lose weight (or gain it yay paradoxes!!)

And not to be a dick but… exercise. The more we stay still the more we’re going to. An object in motion stays in motion and all that jazz. DONT OVER DO IT! Start very easy. I’d suggest Thai chi or yoga. They make them for people of all movement capabilities. Walking is also a good idea but I wouldn’t walk more than a block at first. For me walking too far can cause bad hip and knee pain. Thai chi is much easier on the body imo.

Vitamins. Sometimes we’re feeling weak because fibro just looooves to ignore nutrients in the things we eat. Taking vitamins and most importantly D-3 so you can absorb those vitamins is very important.

Rest. I just told you to exercise and now I’m telling you to rest, whaaaat? Getting enough rest is one of the most important things you can do to help with fatigue and pain. BUT NEVER DOUBLE SLEEP! The dreaded second sleep pain is horrible! If you wake up for more than 30 min I’m so sorry but stay awake for at least a few hours. If you go back to sleep when you wake up you’ll feel swollen and achey and awful! Naps can be dangerous because of this too. Learn your body and your ideal sleep cycle. Mine is six hours of sleep. Seven starts to hurt, anything beyond that and I don’t wanna get outta bed in the morning when I wake up Dx

Avoid coffee. For me at least coffee worsens pain symptoms and makes me more tired when it wears off. If you’re adamant it works for you try cutting it out for a week or two and see if you see an improvement in your symptoms. No two fibro bodies are exactly the same so it might actually work for you.

This is the experimental section:

So since people with fibro tend to sundown with their pain (pain gets worse at night) I’ve thought of trying a sun lamp to simulate sunlight at night. I have not tried this and have no idea if it will work.

Various mushrooms. I’ve tried one for pain and it helped a bit but I can remember for the life of me what it’s called. A quick google search will show you all sorts of mushrooms for pain. Chaga and lionsmane come to mind, tho I have not tried these.

In conclusion: EXPERIMENT! Try different things, try all the things! Fibro is a crappy journey we’re forced to go on, but we can find aids to help us just like with other disabilities. We just have to not give up! I would recommend keeping a pain journal and also listing what you tried for pain. Record your pain number before you take whatever you’re going to to help, then a while later record your pain number again. You might not think it’s helping but sometimes things will knock the number down by a point or two. If so it’s worth exploring more.

“Fibrophobia” the fear of doing absolutely anything physical that could provoke a fibro flare-up. (Original creds to @ Dear Fibromyalgia for this definition) When you have fibromyalgia it seems and sadly is a reality that really anything can negatively affect your pain. Stress, exercise, temperature, etc. and because of that I will admit, I get anxiety more often than not thinking that everything will lead to bad pain. I hate living that way, but sadly it is a very possible reality. I think it scares us from living, but it’s also hard to get over that fear when it’s rational and can really lead to more pain. ⠀ ⠀

I want to share my biggest fear that fibromyalgia could negatively effect. I want to be an actress. I once shared this fear of mine in a support group and this lady who does makeup for shows and movies once commented and gave me SOME peace of mind that acting may be an easier job as a lot of acting is sitting around waiting to shoot, they have water and healthy foods on deck, can nap when I don’t have a scene in my trailer or dressing room, can still get some exercise so it’s very accommodating. That has been a relief, but there are also some fears that come to mind. ⠀ ⠀ ⠀ ⠀

One thing I know for sure is that this is the thing I’ve wanted more than anything, and whether I have to get a massage everyday, or bubble baths every night, even if it hurts terribly every day I will not let it stop me. But there are some things that leave me hesitant. For example, Id love to be on type of shows that wouldnt be too bad like a cw one (like tvd), a teen high school one like Degrassi, one tree hill, the oc, pll, etc. greys anatomy, a Netflix one, and for the most part wouldnt be too bad. but my dream is to do movies and shows that are more demanding. Like marvel, Harry Potter, stranger things, Jurassic world, Godzilla /Kong ones, tbh any franchise, heavy action ones. So I constantly fear that is going to beat me down physically everyday or that they would rather cast someone who’s healthier who is less than a liability. In a marketing standpoint it’s nice to hire someone with fibro to show people it’s possible, to tell children to never give up but idk if that is worth risking their projects over. I would work my ass off even harder if I got the chance because of fibro, but you just never know. ⠀ ⠀

Another fear is one that people might not understand if you don’t have fibro and don’t live like this to be honest. My sleep. Yes 9-5 jobs in the acting world are possible, it’s more of the sitcoms ones but as we’ve establish I have my heart set on other type of shows which are ones that can go on into the middle of the night. I take meds to help me sleep and I have to take them at a certain time for them to kick in in 3 hours. With acting especially with the kind I want to do, it could go over schedule, change and what if I take my meds and it goes over schedule, and I’m even more tired. Or if I get out late and take my meds too late so going to bed basically in the morning, and what if I just have a scene in the morning. Yes I can nap in the day but with chronic fatigue you want and need to sleep at night. Or could just not take them that night if i have to, but i need to to sleep. I’m sure it’ll be a cross this bridge when we come to it thing, but when I don’t take my meds I fall asleep and wake up right after, all night. The longest staying asleep like 20 minutes at a time, but more often waking up right after I pass out. I know I will figure out what works best for me, and will just depend on what may happen that day but it just gets me nervous. ⠀ ⠀

I think that fear has a large part on fibromyalgia and it stops us from doing things sometimes because we want to avoid what we feel is the inevitable. But I’ve also learned that fibro is unpredictable, and some days when you think it’ll be too bad to do something and you have to do it anyway it may not actually be as bad as you may have thought it would be. I would never not follow these goals because of these fears because I know that even if it will be a lot harder, it is still possible and that’s all I need. It just scares me. But as I look back on my childhood, I see little things that I did that make sense when I realized that I wanted to be an actress. I don’t even remember exactly when I figured it out but it just all made so much sense. I have a bunch of goals, but acting is the thing I want most, that I think of everyday, that drives me. And pain or not, I won’t let it stop me from my goal. ⠀ ⠀

Another thing that inspires me to not give it up out of fear is knowing that there are other people with dreams who have fibro that feel as if they’ll have to give it up because of fibromyalgia. I was the same way. I so often hear why you’ll have to quit because of fibro, that most things are impossible, that an ever lasting love story isn’t realistic because of fibro. But I want to show people and not only them but myself that it is possible. I want everyone to know that yeah it may be hard, but when I go up to get an academy award or something someday that I have fibromyalgia and I’m doing it. And that is something that’ll make me push through that fear everyday.

Thess vs Dune Part 1

So I saw Dune. I would say I watched Dune but honestly? I’m still living with the migraine from that one. Part of it was the visual effects - so much fucking blur, which I’m sure looked cool but more or less killed me straight off, not to mention the “Having A Vision” cinematic tricks and the contrast between dark interiors and Unforgiving Sun On Sand Dunes Sparkling With Spice. Most of it, though, was the bass. Cinemas in general tend to crank the bass on their speakers, and they always turn it up loud. Since most of the effects from explosions to weapons-hitting-shields to Bene Gesserit Voice to the music as a whole were bass-heavy, it was loud enough in the tiny cinema I was in to shake the floor and the seats, to the point where it caused a fibro flare on top of the migraine. So I missed a lot of dialogue because of both the bass garble and the struggle to focus through the various types of pain.

(Despite seeing the shape I was in afterwards, Mum still wants me to go to Part 2 with her. I’m telling her that if she really wants me to do that, she’s buying my mallet meds at minimum.)

Anyway, what of it I did manage to grasp was ... eh. I saw a post about Ursula Vernon commenting on Twitter about it being a particularly humourless movie, and people getting on her case about how “Well, obviously - it was a humourless book!” and “Marvel Syndrome! Imagine thinking things need witty one-liners every five minutes!” and I’m going, “...Do you guys know anything about pacing and tension and the release thereof?” My issues with this movie as far as I could actually focus on it were ... not so much that there were no jokes, but ... okay, two things: the fact that the pacing was far too unforgiving in terms of narrative tension, and the fact that they clearly tried to relieve the tension in places but the effort was flat, unconvincing and kind of wasted because it didn’t happen in the right places to relieve the narrative tension and let people breathe before the next Portentous Thing. I saw a few things that were trying to be tension-breakers, but just came across as More Portentous Statements, and it broke immersion without breaking the tension for me.

The movie was, to me, the narrative equivalent of Sisyphus pushing his rock up the hill, and the “To Be Continued In Part 2″ was it rolling back down to the bottom of the hill, a statement of, “I’m going to have to do this emotional effort with nothing to relieve the building pressure all over again”. Maybe that’s the narrative mood the book itself wanted to convey; I seem to remember trying to read it when I was very young and kind of giving up really early. I’m starting to see why, now. I don’t think ‘lugubrious’ is too strong a word. The victories were entirely Pyrrhic. The “War Is Eternal” vibe of the Empire and the Harkonnen and even the Atreides, plus the lack of any true element of light-heartedness anywhere, made the whole thing feel like Warhammer 40K with colonialism on the side. Even the mentions of eventual Paradise were more focused on the blood the Outlander Chosen One would have to wade through to get there than the hope he represents. And it honestly would have been more powerful had we been shown ... not even humour, but happiness to any degree before it all went to shit.

So yeah, I have no interest in suffering through Part 2 from a purely health standpoint, though I might watch it to see Paul-as-Muad’Dib do his “Become As The Natives To Meet Destiny” shtick. And I might even watch Part 1 again to catch the dialogue I missed to migraine and bass garble. But ... I can’t with the cinema. The acting was good, the sets and costumes were amazing, but the story leaves me cold and the pacing needed work.

Also ... ScreenRant has an article about “Every Hint Paul Will Become A Villain” like he’s Anakin fucking Skywalker. Except that we all knew from the start that Anakin was going to become Darth Vader and ScreenRant doesn’t seem to understand that the fucking books exist. Clickbait bullshit.

Note for fanfic updates like Adrien August specifically(Note that I just posted on it)

Summary: Updates will be slow because I’m suffering from really bad flare ups that haven’t let me chill for 5 days now and counting. Read below if you want more details LMAO

Hello! How are you all?

I debated whether to use talk to speech to write this note and then decided that I would just type it. Sigh. haha Some of you may know, because I don't hide it and feel like a broken record I'm sorry, I struggle with Fibromyalgia/PCOS/IBS/Anxiety/Depression. It would be easier to research Fibro than for me to explain it. XD It's different for everyone. Some have it worse than others. Some have it better. There are good and bad days and bad days are called flare ups. There is no cure for Fibromyalgia. It is also one of the invisible chronic illnesses. This means that when doctors look at me on a level of testing, there is nothing seemingly wrong with me but clearly there is. lol I have elevated inflammation, but otherwise on a medical level... I seem healthy and fine. However, that is not the case.

Fibromyalgia I got diagnosed with at this year? I don't even know. I've been suffering from it for months... or more without realizing it. Basically... on my worse days... I will be coughing, my sinuses will swell in my face and all over, my joints will swell and pop (all of them), muscles will pop and go weak and will spasm, pattern lights (flickering strobing... patterns...) will make my brain act weird. I will have times where I feel like I'm listing on a ship on the ocean and will have to grab walls to balance, I will double up words... like 'I went went the store' instead of 'I went to the store'. I will write one word and mean another. I can't multitask or drive. The only time I can drive is if I've driven there enough to know my way there by muscle memory. I will drop cups and things... my wrists and fingers will swell and stiffen, making it hard to write. I will not be able to coherently talk sometimes and speak slow due to exhaustion. I will randomly get so tired I HAVE to lay down or sleep. I suffer from chronic migraines and from grinding my teeth in my sleep. I have moments where I hobble everywhere and have to stop walking because either my legs give out or go numb. Hands and feet tingle, shoulders, back of my neck... stuff goes numb or hurts. I sneeze or cough and will hurt my ribs, sternum, or back and have pulled my hip flexor sneezing THREE TIMES. lol

There are three medications, physical therapy, my brain is blanking. That's part of it too... Sometimes I forget what words I want or what I'm saying and I blank out. lol Mental therapy (I normally know the word beside therapist and psychologist and psychiatrist lol) and other things you can do for it... but I can't take medications due to being sensitive to almost all of them. I can't afford to do the rest. I can "walk" and I can rest. LMAO That's it.

I am saying all of this because not being able to stand or crouch for ages, not being able to lift heavy things... sometimes not being able to stir a meal I'm cooking or cut something lol.... not being able to focus... makes it near impossible for me to work a normal job like I used to. It's frustrating not being able to do what I used to be able to do. It's frustrating to feel like I need help and I'm stubborn as all hell about it. LMAO But I just laugh it off as much as I can when I drop something or can't do something randomly.

A friend of mine that suffers from chronic illness told me to never let myself sink and be proud and celebrate the little accomplishments. She also sent me the Spoon Theory to help others, who don't suffer from a chronic illness to better understand chronic illness.

I am saying all this because Adrien August is going to be releasing and updating really slow because these past five days (yes, sadly I've been counting) have been complete utter Hell for me. My fingers hurt typing this, my body hurts from my neck down to my lower back and it is tingling and numb. I'm exhausted. I'm frustrated. I feel like a burden to people in my life. I'm full of anxiety and depression to the point I have not been sleeping well and I've just wanted to cry for no reason other than feeling like my ability to control my emotions is hanging on a thin thread. LOL I'm struggling with my left leg when I walk the last few days. I'm just realizing I need to slow down for the next few days. I'll be reblogging with @chimpukampu and @lalunaoscura but this fic will be moving slow. Not too slow... but I'm trying not to push myself. I probably forgot some symptoms tbh because there are so many of them. XD

Anyway, I'm sorry that I am slow at updating lately. It's because I've been focused on other things and then this flare up has lasted longer than any so far and it's absolute murder. lol I'm usually a super positive person but lately this has been kicking my ass hard. XD I thank all my amazing friends for letting me vent and for lifting me up. I thank my husband for putting up with me and my frustration at myself that I am projecting outward, which I feel so guilty for. XD I just need to realize when I can't do something... it's okay, because it is okay. It's okay to need help. I don't know how many damn times I've written that in a fanfic, LMAO!!!!! but it's true! It's okay. It'll be okay. It'll get better. I got this! I had it before... I can get it again! LMAO

Sorry to be a downer and I hope you all are having a wonderful night or day where ever you are and thank you for all of the support! Seriously!

Lammas/Lughnasadh Blackberry Muffins with Oat Sunflower Seed Crumble Topping

So this year I unfortunately am not feeling too great. I usually go all out for pagan holidays, but this year with my fibro flaring and me being so overstimulated I'm acting all wild, I decided I shouldnt do anything too crazy. Plus.....I've been so stressed I pretty much forgot it even was lammas until the day before. Oops.

I still wanted to do something. So, I came up with a recipe that includes some ingredients usually used for Lammas. It's got sunflower seeds and oats, along with blackberries. All are apart of the harvest of Lammas. And muffins! They are apart of the bread group! I also added extra spice because my deity, cernunnos, LOVES spice. Figured it would only be fair to add a little extra just for him (and I love spice too) spice for luck, protection. Blackberries for Brigit, sunflower seed and oats for the harvest/ Lugh.

Muffins:

2 1/2 cups flour, all purpose

1 tbsp baking powder

1/2 tsp baking soda

1/2 tsp cinnamon

1/4 tsp cloves

1/4 tsp nutmeg

1/4 tsp ginger

Zest of one lemon

2 eggs, large

1 cup sour cream or plain greek yoghurt (I prefer sour cream as it gives a better flavor imo)

1 tsp milk, or water

1 cup white sugar

1 stick melted butter (8 tbsp)

1/2 tsp vanilla extract

1/2 tsp almond extract

1 1/2 to 2 cups fresh blackberries, cut in quarters (the bigger the cut the more it will fall to the bottom. Too small they will not be found in muffin. I put two cups as an option for more berry flavor. No more than this though or your muffins will not bake properly)

Crumble topping:

1/2 cup sunflower seeds, blitz to break up

3/4 cup oats, blitz to break up

3 tbsp flour

3 tbsp sugar (optional, I like mine a little less sweet personally)

4tbsp melted butter

Directions:

Preheat oven to 400° F. Line a 12 cup muffin tin with liners. This recipe makes around 18 muffins!

In a large bowl, whisk dry ingredients and fresh lemon zest to incorporate.

In another bowl, whisk your wet ingredients. Make sure the butter isn't too hot or the eggs will cook.

Add wet to dry and stir until just combined. Fold in blackberries. Do not overmix, if you do, the gluten in the flour will build up and make your muffins extra dense.

Meanwhile, combine blitz sunflower seeds, flour, oats, melted butter and sugar for crumble.

With a small cookie scoop (very small, not the regular sized ice cream scoop) place two scoops in each liner. The mix should be spread out and look as though it is just a little bit below the top of the liner. Top with crumble. Place the excess muffin mix in the fridge while they bake.

Bake for 17-20 min or until golden brown.

Enjoy warm with butter and make sure to offer some to your gods, as well as the fae. They seem to like when I offer blackberries.

You can also bury some of these as an offering to the earth.

I hope everyone has a wonderful lughnasadh this year!

What does PMA mean to you?

Okay, I'm going to touch a delicate subject, bear with me, especially my fellow disabled babes.

To me, it's a kind of oral motto of what I've doing for years. A translation. Because I want people around be to be happy and well, I'm always a positive, optimistic force. And, as I said previously, I've been bullied for that, being called "fake" for that "because no one can actually care so much about everyone".

I've been in @therealjacksepticeye community for about four years, four and a half years, now and, for some reason, I feel like PMA isn't quite the same for everyone.

I tuned it down for a while, because I was kind of a "people pleaser" too, and I didn't understand why I shouldn't care about others. I mean, we're on same boat, why not make our collective trips around the sun pleasant for everyone?

But, as said numerous times on this blog, I have fibromyalgia. And this thing is a molden sandwich... Because not every doctor actually accept this syndrome as it is, a lot of them thinks it's actually AFAB people who can't take it and are overreacting. Nice. Can't wait.

It didn't put a hole in my way of giving and caring. I never stop once being optimistic and kind for my friends and family.

Put it did put a hole on the kindness and positivity I was giving to myself.

I stopped being caring, attentive and positive about my body. I treated like a burden.

Even worse, people around me started to go with sentences like "see, even in their illness, they find force to help others" and different stuff like that. My caring and solar nature was suddenly inspiration pr0n for abled folks. Those people used me, as an example for it is to be a good "disabled". And it drove me insane. First, because stop feeding us with those of us who can, at a cost you'll never understand, act like abled people. That's not what disabled people need...

And then, in the community, people were throwing "PMA" at each other, as if talking about issues was negative. As if those three letters (or words "Positive Mental Attitude") was some kind of magic spell that would make everything go away.

It doesn't. Instead of feeling loved and accepted, I felt judged and out of place. Those words Seán put on my nature became empty words that cannot help me. So I took a biiiig step back from the community, and started to reflect on what that acronym maint to me.

Obviously not the same as abled people who told me to tune it down because my views on the matter were getting the vibe down.

Being positive doesn't mean you're always happy and shinny. It doesn't mean closing your eyes on what's problematic. If it was, you'd be taking Joy Pills like gummies.

I left the community because, when I tried to reach out to talk about illness or anything "not positive enough", either numerous people throw PMA at me like it was the obvious solution, dah, or they just flood with more shiny things to make my post disappear. And I'm pretty I'm not alone in this.

So, what does PMA mean to me?

Well, it means to be true to myself, to accept my optimistic nature and keep hoping for the best.

It's also a reminder that I can always find some positivity in any situation. It won't make the bad go away, that's not the point! The point, for me, is to never lose track of the light, even when I'm down in the darkest pit.

Some examples? I had a fibro flare (a big rush of immense pain for days on ends), I took my meds and all, of course, being positive doesn't replace your meds, then I went back to bed, blinds halfway up, window opens and I just stared at the blue sky and enjoy the outside air on me. It's not much, it doesn't do anything on my pain level, but it does help me relax.

Even more than that, it's actually helping me with my grief.

I lost my (unique) grandad on the 5th of June 2020. He was 88 years old. I was not ready, at almost 30, to say goodbye. The whole time he was in the hospital, I was stuck a thousand kilometers away from him and my family, unable to move because of quarantine. I talk with him on the phone as much as we could, but his lungs were filled with water so he didn't had much stamina before being out of breath. My grandfather and my grandmother helped my mom raised my brother and I. He was my true father figure and I love him so much. And I miss him so much too.

Don't get me wrong, I cried my eyeballs out and I still cry a lot everytime a new memory of him gets to the surface of my mind.

But, as always, I tried to find some positivity in the situation, because when we cry, we cry for us, because we're the ones who have lose someone, we don't cry for the one who has left.

And I find some. My grandad was sick for almost four years. He had a septicemia when he was 85, which the doctors didn't find right away, so it gave him a wound on his left leg that never healed. Because his body was already fighting an embolism (he had way too much water in is blood), his heart was already tired. So, when he left, he left all of his pain, all his suffering and depressed state behind. He was freed. He also left peacefully, during the night, while sleeping, and that's all I could have wished for.

And, reflecting on that helps me a lot. It gave me a bit of clarity to help me focus on all the things he taught me, what he showed me, the tricks he did, his laughs, his proud smirk he tried to hide behind his moustache when my brother or me did some mischief but it was actually clever, the hours we spent together doing crosswords since I was something like 5 or 6 (and yes, he did ask me if I had an idea for every word, explain to me why my ideas couldn't work and always congratulated me for trying, and even more when I remembered the word from another grid).

Yes, his body doesn't carry him anymore, but all of our family carry his essence within us. And we can all spread his own mischief and tricks, so he'll never truly be gone.

That what's PMA is and does for me.

PMA is not the way to avoid the darkness, it is the light you bring with you to go through it.

Sick Kids

gotspoons: [A chatroom/forum situation for teens with invisible illnesses/disabilities, a resource that is recommended when you can't go to IRL groups for your health/they aren't in your area etc] gotspoons: Ticked one whole thing off my to-do list today, feeling like a champ 💪 also feeling like a 2-hour long nap, who here relates? 🥱 tigerbalm: 🖐 took my nap earlier & yet 😴💤 brainpain: 💕🛏 brainpain: long lasting relationship with my memory foam mattress gotspoons: There is NO limit on the number of naps necessary to make it through the day tigerbalm: or the number of abandoned to-do lists, what was your 1 thing? gotspoons: 🚿 looks like breakfast will have to wait tooexhaustedtolivevicariously: @brainpain I have so many memory foam pillows in every room of my house I'm basically a shareholder 🙌 brainpain: @tooexhaustedtolivevicariously same but I've got my fave, I call him Edgar tooexhaustedtolivevicariously: 👏🙏 thank you for your service, Edgar tooexhaustedtolivevicariously: must name mine, only named the chariot 🦼 Charlton gotspoons: [ihatemyguts has entered the chat] gotspoons: A newbie, welcome! tigerbalm: 👋 tooexhaustedtolivevicariously: love the username, what ails ya? tooexhaustedtolivevicariously: because this is the only place it's acceptable to ask 'what's WRONG with you?' but not the only place you encounter it, right brainpain: but you don't have to answer cos it's also somewhere where you're encouraged to 'express yourself' translation: be an arsehole if you want brainpain: if you don't go hardcore enough to get blocked brainpain: @fibrofog LMAO tooexhaustedtolivevicariously: the normies get to be rude as their default, and it is NOT encouraged to hit people with your cane, let me tell you ihatemyguts: Hi, everyone ihatemyguts: I'll do my best not to be an arsehole, even if my problem only lie directly above said orifice, which makes it a struggle not to be at times ihatemyguts: UC, first flare totally fucked over the family holiday 😬 sorry to that hotel toilet and my long-suffering parents and brother brainpain: newbie got jokes AND comedy timing ihatemyguts: 🚽 humour isn't all I have, I swear, though my life now does revolve entirely around the porcelain throne so it's no surprise I'm anally expulsive, thanks to Freud for that read tigerbalm: Freud's the perv, am I right? ihatemyguts: Totally ihatemyguts: and a big believer in the cocaine cure-all, which my Doctor just wasn't going for, shame tigerbalm: sounds like my sleazy uncle in every way tigerbalm: why does everybody get one? gotspoons: 😂 This chat is worth keeping my eyes open for gotspoons: every family is a play, and we're destined to be the 'sick kid' part gotspoons: other players react accordingly, from the 'can't look at you without crying' to the 'thinks you're making it up for some reason' brainpain: I vote we all go off script like @fibrofog 🤬🚨👿❗️ ihatemyguts: I guess I'm lucky in the sense that if anyone doubts the legitimacy of my illness, I can offer to show them the contents of my stomach/toilet bowl ihatemyguts: that shuts them up relatively fast, not had to go full 🐒 and throw it at anyone yet ihatemyguts: though I'm intrigued by the infamous @fibrofog, who are they, where, and why the infamy? Fill a girl in brainpain: the myth, the legend brainpain: so angry cos I turned 'em down for a romantic rendezvous ihatemyguts: No way! ihatemyguts: I'm glad that napping isn't the only action the memory foam is getting ihatemyguts: we're just like any other teens, right guys? 💁 tigerbalm: @brainpain you know the rules, fedora pics or it didn't happen! tooexhaustedtolivevicariously: you know what they say about disabled chicks, grateful 😉 tooexhaustedtolivevicariously: #dontkillmeladies #iamnotasleazyuncle tooexhaustedtolivevicariously: don't think Mr. Fog was even a legit 🥄 tooexhaustedtolivevicariously: total predator tigerbalm: if it was my uncle I'm SO sorry 😂 tooexhaustedtolivevicariously: family who piggyback are THE worst tooexhaustedtolivevicariously: no, MY disability doesn't make YOU automatically WOKE for not drowning me in the tub or throwing me off the nearest high place I can access ihatemyguts: Honestly, I've never felt as simultaneously popular and unpopular in my life ihatemyguts: people 💬 a big acceptance game on the socials ihatemyguts: but no one wants to actually hang with the girl who can't eat shit and will spend half her time in the 🚽 gotspoons: Everyone's supportive until your disability gets in the way of THEIR perfect life even slightly gotspoons: imagine if they were one of us 👽 brainpain: speak for yourselves, my slurred speech makes me a hit with all my hard partying peers brainpain: get weird without a 🍹 ihatemyguts: hey man, don't let us drag you down 😎 ihatemyguts: if @fibrofog was feeling you, you're WAY too cool for this chat right now brainpain: never have, never will, baby 😉 brainpain: [inandout has entered the chat] gotspoons: OH MY GOD, that's a whole different story...my parents = you need to socialize more, live life! my parents = I don't know if this group is good for you, we think you're being encouraged to display and give in to even more problems gotspoons: thanks guys, you're literally making me more disabled with your disabledness 😂 tooexhaustedtolivevicariously: It is a cult, well-known fact, leave your productiveness to society at the door and let's all lie here and feel sorry for ourselves, doesn't that sound like fun, kids? 😈 tooexhaustedtolivevicariously: and 👋 sup, inandout, not seen you in a while tigerbalm: my parents act like y'all are catching too! Would you like to cage me like a legit 🐅 or? inandout: baited breath inandout: out living that life like @gotspoons parents want tooexhaustedtolivevicariously: It'll be the Olympics next tooexhaustedtolivevicariously: 🥇 Hero status with the normies, inspirational, dude inandout: if it'll make adults I've never met proud of me ihatemyguts: I can't believe I've not checked if I'm disabled enough for the paras, oh my God ihatemyguts: are there enough of us for a basketball team? brainpain: if ONLY my former lover were here brainpain: he's gotta be so tall ihatemyguts: Pining for @fibrofog is productive, yeah? ihatemyguts: can pine from my throne just fine brainpain: hands off newbie! I will throw mine brainpain: LOL imagine gotspoons: This group has always had a bias towards too many girls gotspoons: it's almost as if even disabled boys don't wanna talk about their feelings gotspoons: what say you @tooexhaustedtolivevicariously and @inandout? 🤔🤴🤴 inandout: I'd bring friends but you know us CF kids aren't allowed to congregate inandout: and what could I possibly have in common with someone who doesn't share my disease ihatemyguts: So, what is the deal with that, are some of us catching? ihatemyguts: 🐅 parents might have legit concerns inandout: cross infectious but only if you've got what's got me inandout: none of you do so you'll need another reason to turn down hanging out in person tooexhaustedtolivevicariously: my fedora is in the wash? inandout: Fibro could easily say it's my jewishness brainpain: but it's your hunkiness, babe 💪😉 inandout: I'd whistle back at you, Lauren but.... inandout: let's just say you leave me breathless tigerbalm: No names, Zach tigerbalm: it's like a rule ihatemyguts: uh-oh ihatemyguts: if you had a name, Tiger, in theory, like ihatemyguts: 🧐 tigerbalm: Robyn ihatemyguts: Pretty, you others may as well just come out with it now ihatemyguts: even if I'm a massive perv with mad hacking and tracking skills, I pinky promise I won't be able to find you from your given name alone brainpain: give us yours, newbie ihatemyguts: I will, but you'll think I'm giving you a fake one ihatemyguts: it's the gift and curse bestowed upon me at birth, along with potentially dodgy genetics brainpain: your life is 💩 brainpain: but still ihatemyguts: Zelda ihatemyguts: a reference I'm sure you won't get, 'cos you're so 😎 brainpain: I game, the stream was fibros fave hunting ground brainpain: no 💩 tooexhaustedtolivevicariously: Turns out being a nerd is way easy from the relative (barely but beats death, yeah?) comfort of the memory foam tooexhaustedtolivevicariously: and Rich 👍 only in name, destitute until my next pittance comes in tigerbalm: she's not supposed to 🎮 -headaches -dizziness -light & sound sensitivity but she's a REBEL brainpain: 👌 MOM maybe I'd love a seizure, what do you know? ihatemyguts: I respect it ihatemyguts: gonna be fondly reminiscing over all those dirty, evil trigger foods when they're resecting my bowel 🖕🚔 brainpain: I had a life before I had a TBI, no offense to 👶 Zach inandout: none taken gotspoons: You're all being bad and I cannot support it 🤐😜 gotspoons: and I'm Rosie, I will just 😴 out on you all the time and yes, it's a fantastic excuse for when you don't wanna respond ihatemyguts: I'll commit all of those to memory in a normal, non-creepy manner ihatemyguts: but whilst I'm allowed to be a n00b, what do you all do for school? brainpain: I was nearly done before 🤯 which got me my pity pass ihatemyguts: pity with a point, at least, alright tooexhaustedtolivevicariously: I'm waiting to start uni, absolutely no thanks to my school and their totally ableist refusal to make reasonable adjustments for accessibility tooexhaustedtolivevicariously: but fedora or not, I can be a real arsehole, a loud, persistent one at that tooexhaustedtolivevicariously: take my applause now brainpain: 😍 brainpain: take my 💘 tooexhaustedtolivevicariously: as long as it's not heavy, m'lady brainpain: you could 💔 brainpain: hold the pieces tooexhaustedtolivevicariously: 🧠 just isn't poetic enough brainpain: you know me gotspoons: you guys are so cute 🥰 and your broken brain is beautiful, Lauren gotspoons: me though, I'm barely struggling through school still, so many sick days, so much catching up to do 🥱 just thinking about it and therein lies the problem tigerbalm: my parents are trying to get online classes set up but my headteacher is like a million years old inandout: is he a demon? inandout: that was some scary fiction brainpain: or was it? brainpain: cue up those sound effects tigerbalm: if we're gonna talk about hypnosis, I'm out ihatemyguts: that was some serious creepy uncle vibes ihatemyguts: why did he need that level of control ihatemyguts: 🐘 in the room tigerbalm: I have a hippie cousin too, alternative therapy talk is so triggering ihatemyguts: I need a memoir re. your family sitch immediately 😂 ihatemyguts: you get the food purists coming @ me as if I just eat the right thing I'd be 'cured' tigerbalm: I'm working on a screenplay but I've never written a script before, I did find an online class for that easily though ihatemyguts: that's actually 😎 ihatemyguts: soz, Lauren brainpain: she's our lil busy 🐝 brainpain: step your game up, Zachary brainpain: supposed to be you, bro inandout: let Robbie have it, she has more sick days to fill up ihatemyguts: always have your 🥇 inandout: I can pin it on like a star when I got to school with the masses inandout: let them know I'm not what normal looks like ihatemyguts: only the others like you need to have the scoop on that though ihatemyguts: really fucks with the segregation in a big way inandout: “I feel like someone breathed new air into my lungs. I am not Abnegation. I am not Dauntless. I am Divergent.” ihatemyguts: Tattoo idea inandout: if I make it to 18, I'll do it ihatemyguts: how long you given yourself there? inandout: I turned 14 in may, the party was a full blown rager inandout: 🏥🎂 ihatemyguts: you like ruining events too? ihatemyguts: what a coincidence, don't just do family holidays inandout: if I can't blow up 🎈 nobody can ihatemyguts: 🥳 smug bastard inandout: I find that party blower offensive inandout: Rosie! That's a strike for the new girl ihatemyguts: Come to me when it's as culturally iconic as 💩 ihatemyguts: my next (first) tattoo right there inandout: how long are you waiting for that masterpiece? ihatemyguts: was 14 in March ihatemyguts: if we both make it, it's a date inandout: cool inandout: way I'm going that'll be my first one brainpain: now I feel like a pervy OLD uncle brainpain: thank you 👶s ihatemyguts: Lemme guess? ihatemyguts: I'm thinking 19 brainpain: spooky brainpain: I'm an Aquarius if anyone cares ihatemyguts: our 🌟s aligning might be too close to alternative for comfort tigerbalm: I'm a cancer, which is awkward tigerbalm: not my diagnosis ihatemyguts: at least it's memorable ihatemyguts: literally tacked on at the end, who's remembering 🎣 tigerbalm: I hope my 16th will be, for the right reasons tigerbalm: I've still got 5 months left to plan ihatemyguts: 🤞🤞🤞 tigerbalm: I'll add your name, the others know they're all invited ihatemyguts: that's so nice ihatemyguts: considering this introduction has given away nothing if not I am a terrible guest brainpain: another chat about online safety, Robyn, REALLY? 😏 brainpain: did my failed romance teach you nothing? ihatemyguts: if that isn't a challenge to send a photo and make you feel really weird ihatemyguts: why are we anon anyway, to stop us uprising? ihatemyguts: metaphorically if not literally, no offense xoxo brainpain: f it brainpain: I need you all to sign up to my stream to pay my bills anyways brainpain: [a selfie] ihatemyguts: @fibrofog, I get it brainpain: don't flock to tell me how sexy I am, that'd make it weird brainpain: plus, I know tooexhaustedtolivevicariously: I picked an awkward time to check back in tooexhaustedtolivevicariously: Rosie falls asleep and anarchy reigns? tooexhaustedtolivevicariously: I'm proud brainpain: 💔 YOU haven't showered me with compliments, but hey tooexhaustedtolivevicariously: if I made it that easy you'd never be 💘 brainpain: 😩 tooexhaustedtolivevicariously: to save any of the rest of you following such a hard act tooexhaustedtolivevicariously: [pic] tooexhaustedtolivevicariously: it's old but still a rough estimation of what I look like on a good day brainpain: 😍 brainpain: You're up, girl Z ihatemyguts: if you're all good looking though, I'm so mad ihatemyguts: [a selfie] ihatemyguts: 💩 inandout: I'm not good looking, I'll go next inandout: besides, Robbie would never bow to peer pressure and Rosie is out for the count inandout: [a selfie] tigerbalm: I am 🙀 tigerbalm: but everyone else has tigerbalm: [the shyest selfie of all time] ihatemyguts: 😻😻😻 ihatemyguts: seriously ihatemyguts: representation done us dirty on so many levels now ihatemyguts: when we're not invisible, why we not so gorgeous tigerbalm: there should be a blushing 😸 tigerbalm: that's the representation I need ihatemyguts: Call me out all you need but I was convinced this whole thing would be a lot more tragic than it has been inandout: tragic Tuesdays are a thing brainpain: no they are f-ing not brainpain: Zachary, just cos the new girl's in your age bracket + shares your 1st initial brainpain: she is not corruptible to you inandout: check us on our date, Lauren inandout: but watch your profanity brainpain: watch me give you a DIY lung transplant gotspoons: Excuse me gotspoons: what is going on here brainpain: nothing babe, it's all a dream gotspoons: 😖 gotspoons: if it was, none of you would be here gotspoons: sorry to say brainpain: we love you too brainpain: hit us with that sleepy selfie gotspoons: You know we aren't meant to give out personal info in the public forum gotspoons: if you choose to privately, that's okay though gotspoons: also I don't look any better for my shower now 🥴🤫 brainpain: you're a hottie gotspoons: 😘 gotspoons: well, my blog IS going to be featured on [insert disability awareness news moment] next month, so it isn't as if you couldn't find 🖼 if you really wanted gotspoons: [photo] tooexhaustedtolivevicariously: Congrats, Ro tigerbalm: a genuine 👏👏👏 tigerbalm: I love your blog gotspoons: Ty, ty 🙇 gotspoons: it's the same as my username, if you wanna check it out, newbie 😄 brainpain: but have you been on the news for being the victim of a violent crime? 😏 just me LOL inandout: Lauren's trading on her fame again inandout: let Rosie have her moment ihatemyguts: pass along all relevant info and I'll 🤓 right up brainpain: @inandout 🍒😃💩👅 brainpain: enjoy the profanity, bro inandout: today's highlight tigerbalm: Zelda could take offence at that, Zach tigerbalm: I think it was nice to meet her ihatemyguts: Not at all ihatemyguts: though it's cultural appropriation to use that emoji without my permission, I'll let it slide 😉 ihatemyguts: nice meeting you all too tigerbalm: I really am gonna have to tell you about my family now ihatemyguts: All I wanted, tbh tigerbalm: everyone else knows this but my parents are white Americans & they adopted me and my brothers who are Native and African American respectively tigerbalm: & you saw me, the Korean girl so ihatemyguts: Ohh tigerbalm: it sounds like a show that should air on ABC family, right? tigerbalm: hella awkward ihatemyguts: I'm brainstorming (p. sure we're not meant to say that, soz) titles rn ihatemyguts: inappropriate question alert, verbal smackdowns appreciated if needed ihatemyguts: did they adopt you knowing you were disabled or is that a new development? tigerbalm: I was gonna call it building bridges but we can't really say that the USA has wronged Korea like the other nations tigerbalm: though they did adopt me knowing so maybe it still works 😄 ihatemyguts: it's got legs tigerbalm: 🦿 ihatemyguts: Ugh, must dash ihatemyguts: 🩸💉s tigerbalm: best of luck ihatemyguts: 💕 total pro by now 💪 brainpain: if I don't 👀 you on my stream I'll 🔎 you here in the forums inandout: a threatening goodbye inandout: can't compete tooexhaustedtolivevicariously: 👋 Hope to see you back here, Zelda tooexhaustedtolivevicariously: though you wouldn't be the first person to 👻 after dropping in, so no pressure, @Lauren gotspoons: but actually, we're always here, some of us more than others, but you'll always find someone to chat to about the things you can't with non-spoonies ihatemyguts: ✌

I want to take my cousin (she's 13 and my favorite kiddo ever) to our local Pride parade this June, but apparently there's like six kink groups marching in it, and now I can't. Since, y'know, she's 13. I'm bummed, and also wondering what your stance on kink in public (such as in a Pride parade) is?

i mean i don’t necessarily think 13 is too young to go to a pride event where there will be kink groups, given most laws won’t allow them to do anything lewd or sexual in public. it’s worth looking up ur city’s public nudity/lewd conduct laws. but hey, your cousin and not mine. it’s def a tricky age to decide what’s appropriate and what’s not.

anyway, i feel differently about public displays of kinkiness in a pride setting and in a general public setting, so i’ll explain each a bit

kink will always be thoroughly entwined with pride because that’s how so many communities started, with gay leather bars. in the 70s in particular, identifying as a leatherman implied inherent gayness and kinkiness without being obvious to the hetero public. the butch lesbian identity came largely from dominant lesbians in the leather community. i think it’s impossible to separate kink and queerness, and for a lot of kinky lgbt+ people they’re just as proud of their kinkiness as their queerness/gayness/transness etc. i’m sure i have a post or two in my archive from last june that’s far more accurate and eloquent about the history of the two, so for me, kink in pride spaces (provided local laws regarding nudity and the general setting are taken into account) is totally a-okay with me. the difference is say a pride parade vs. an adults only street fair like folsom or dore alley here in SF is since pride is generally an all ages event, i don’t think things like nudity or sexual acts in public or any super inappropriate clothing like chaps or t-shirts that say explicit kink-related shit on it (ie those mr. s shirts that have tom of finland porn on them) is acceptable. whereas at an event like folsom, nudity and kink activities are pretty acceptable. but folsom is a kink event first and a pride event second. to consider it in the frame of a consent thing, when you go to something like folsom you’re expecting to see those kind of things, so by walking into those gates you’re giving your consent to see them. at a pride event you might expect to see some leather daddies or rubber boys or puppy boys but those things aren’t really sexually explicit.

as far as in the general public it’s the kinky peoples’ responsibility to keep shit low key. it’s important to remember consent here, and everyone else around you just walking down the street did not consent to be part of your public kink scene. walking people on leashes, full fetish gear, visible bondage, using honoraries, shit like that is inappropriate. kinky people can 100% play in public in a way that your average vanilla person isn’t gonna notice. a hand on the back guiding someone instead of a leash, a choker or a chain instead of a collar, code words for things, those things are perfectly fine. i’ve done these sorts of things before. when i was collared i used to wear a collar but since i’m all gothy or whatevs nobody questioned it.

anyway i’m currently in the Brain Hell Trifecta of a fibro flare, adhd, and pms so i feel like i’m not getting my thoughts across in an effective or concisce manner so like, anybody who wants to throw in their 2c is welcome to, if i’ve forgotten something hella important.

my arthritis is getting worse and i don’t see my rheumatologist for another 3 weeks

my ankle is so fucked from driving and my hands are constantly acting up now, and this shit is only going to get worse as temps drop

i don’t know what to do about any of it, my fibro is flaring too and im getting more and more sensitive to touch as the days go on

i wish i could take a week off from work and sleep for three days straight

5 Things to Know About Dating Someone With Fibromyalgia

New blog post! Even though fibromyalgia is an invisible illness, it has some very visible effects on relationships and dating. So what should you expect when dating someone with fibromyalgia - or what realities should you expect to explain if you’re dating and you have fibromyalgia?

Considering that I was diagnosed with fibromyalgia at age 11, I’ve certainly learned from experience that I’m not a “normal” date - and that, sometimes, I need a little extra TLC in relationships. So today, I’m getting real about romance while chronically ill and talking about five things people should know about dating someone with fibromyalgia.  

1. We have to cancel plans. Regularly.

I get it. No one likes it when someone constantly cancels plans. When you’re dating someone with fibromyalgia, though, expect that changes in plans will happen. We can go from feeling great to having a migraine that feels like our head will explode in just an hour, and sometimes that means we can’t do what we said we would. 

So if you can be flexible and understanding with your plans, your date with fibromyalgia will seriously appreciate it. If you want, you can still offer to come over and do something more low-key than originally planned (like getting takeout and watching Netflix instead of eating out at a fancy restaurant). Just don’t be offended if we say no. In my experience, sometimes having company makes fibromyalgia flare ups a lot more bearable. Other times, I just want (and need) to be alone. 

But the offer to help with our fibromyalgia pain any way you can is always appreciated. Just as much as we appreciate people taking our canceled plans in stride and knowing we canceled because of our chronic illness, not because we’re “flaky” or “anti-social” or want to avoid you. 

2. We're always super excited for a massage.

Obviously, some people are more comfortable with being touched than others, so always ask before you decide to channel your inner masseuse! However, at least in my experience, people with fibromyalgia rarely turn down a back rub, foot massage or anything in between. 

After all, even though we may not (want to) talk about it, we are in pain. All. The. Time. So when someone cares enough about me to ask how they can help and offer to rub my tight shoulders, that’s a big win in my book.

(Source)

If you’re looking for a way to show your chronically ill partner a little extra love, check out my article, 7 Random Acts of Kindness for Loved Ones with a Chronic Illness

3. We may need to avoid certain foods to feel our best.

Everyone with fibromyalgia is different, and so are people’s treatments for fibromyalgia. However, more and more research is connecting gluten and FODMAPs to fibromyalgia pain. I also know from personal experience that people with fibromyalgia can have certain edible “triggers” that increase fibromyalgia pain, like large amounts of corn for me. As a result, when you’re dating someone with fibromyalgia, you might also be dating someone with dietary restrictions. And that can be, well, frustrating when you want to eat at a certain restaurant but it’s not safe for your date or when you want to get your date an edible present but never know what he or she can actually eat. 

But if you accept that we need to eat a certain way to feel our best, ask about our diet and help us eat deliciously with those restrictions, and make us feel like we’re not a “burden” for our dietary limitations...well, you will be GREATLY appreciated. 

4. What we "can do" changes every day...and it can hurt to watch us hurting. 

One of the hardest parts about living with fibromyalgia is how quickly our symptoms can change. Some days, we feel awesome...and then we overexert ourselves or eat something that doesn’t agree with us or just get unlucky, and we are stuck in bed or turned into a “fibro fog” zombie for days. 

Even more frustrating than these changing fibromyalgia symptoms, though, is the powerlessness that you may feel as a significant other. Sometimes, nothing - no massages, special meals, ice packs, heat packs, etc. - helps with the pain. Sometimes, we cry because we’re hurting and it’s not fair and we just want to be “normal” for once! And seeing us hurting without being able to “fix” our pain can be, well, freaking hard. 

I don’t have any magical coping mechanisms to share for seeing your date in pain. It’s a struggle I’ve witnessed in my parents (my mother has fibromyalgia), as well as in relationships of friends with fibromyalgia. And, of course, I’ve experienced it personally as well. 

My biggest piece of advice is to know that this my-date’s-pain-hurts-me-too situation will happen if you love someone with fibromyalgia. It’s an inevitable result of loving someone in chronic pain. But you can control how you react to these feelings (i.e., by getting angry and blaming your date, or by acknowledging the cruddy situation and trying to still act out of love instead). And even if you can’t take away our pain, just knowing that you’re there for us - to watch Netflix, to cuddle in bed for hours, to just say, “This stinks but know I still care about you.” - when we’re at our lowest can make a big difference. 

5. Having someone believe in us - and the realness of our invisible pain - is priceless.

Speaking of support...many people with fibromyalgia are used to not being believed when it comes to their chronic pain. We’re told that we “look normal” or we’re just “not trying hard enough to feel better” or our pain “can’t be that bad.” 

So if you believe us when we say that we have an invisible illness that causes us to hurt almost every hour of every day? That’s pretty dang special.

As mentioned earlier, everyone with fibromyalgia is different and they may react differently to being asked for more details about what living with fibromyalgia is like. Personally, though, I’m grateful when people care enough to ask what a “regular” day of life with fibromyalgia feels like for me, what they can do to help me during a fibromyalgia flare, and more details about what fibromyalgia is in the first place. 

For better or for worse, fibromyalgia is who we are. So if you love someone with fibromyalgia or are just dating a fibromyalgia warrior, knowing a little more about what this chronic illness is like can also help you understand us better as well. And if you love us on our good days and bad days, when we’re pain-free and when we’re taking painkillers like vitamins...we’ll love you for it. 

Dating (Someone) With Fibromyalgia: The Bottom Line

The truth is, whether you’re the person with fibromyalgia or the person dating someone who has it, dating can be a little more complicated. A healthy, happy relationship can require a little extra flexibility, lots of honest conversations about how your chronic illness impacts your life, date night restaurants that can accommodate a special diet, and much more. 

I firmly believe, however, that people do not have to be 100% healthy to be 100% worthy of love. Just like I believe that dating someone with fibromyalgia can have some hilariously accurate benefits (like the nine I list here).

Like this post? Tweet me some love by clicking here: "What should you know about dating someone with #fibromyalgia or dating while you have a #chronicillness? Read 5 things I want everyone to know about #fibro and #relationships here --> http://bit.ly/2LOf5AC   #invisibleillness"

So if you’re dating someone with fibromyalgia and don’t know where to begin, just know this: we do need a few special accommodations because of our chronic illness but, at the end of the day, we’re just people. People looking for love...and excited to find someone worthy of giving ours to. 

What else should people know about dating someone with fibromyalgia - or another chronic illness? How do you navigate dating with chronic illness? Tell me in the comments! 

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May 12th, National Fibromyalgia Awareness Day. 🦋⠀

I was 13 when my journey with fibromyalgia began. This year it will make it 8 years since. I remember hearing from doctors, “you’re young, you shouldn’t be in pain” well, that didn’t stop it from happening anyway right? Fibromyalgia affects more than 3 million people in the US alone per year. I was cheerleading with fibromyalgia. I was going to dances with fibromyalgia. I was going to school with fibromyalgia, going to the mall, laughing, smiling, all in pain and feeling so much every single day. And there are days where I can’t even get out of bed. Or I cry when i walk a little too much. Or i get a sharp pain that has me hunching over in the middle of a store. Or when my insomnia and my chronic fatigue are both bad at the same time and i hallucinate. Just because people with fibromyalgia smile, doesn’t mean that we are not in pain. That doesn’t mean that we don’t deserve to have a cure. ⠀

I had different ideas for this post. A little positive. But I don’t have that in me. Because I am just so mad at the world. I’ve been having a really hard time with this recently. Even after 8 years for me, acceptance is hard to find. Because we do not deserve this. I don’t want to be in pain anymore. I don’t want to feel exhausted all the time. I don’t want to also have insomnia. I don’t want to deal with the symptoms my body likes to randomly throw at me like fibro fog or sensitivity to weather, whatever weird shoulder arm thing my body has decided to hit me with, numbness, skin sensitivity, light, noise sensitivity, flares, and so much more. I want to be able to one day say that I used to have fibromyalgia. I know we all do.

From a monologue I wrote for one of my acting classes, “And I feel like I’m never gonna be truly okay, because I am going to always be waiting to wake up from that nightmare. And I never will. I don’t deserve you. You do not deserve me. You don’t deserve to take my dreams, and my hope, my days, my laughter, my happiness, my life. But if you want to there’s not much I can really do about it to either succumb and let you…or try to survive through you and in spite of you. But that doesn’t mean it doesn’t hurt. But with that being said, I just want you to know… I am here. I am here fighting to have and keep those things everyday in spite of you. Good days and bad. You may win the battles, but I will win the war, I promise you that. And I will never give you the satisfaction to say otherwise. You may beat me down, but you will not break me. Because that is what I deserve.”

I find it so hard to even see myself dealing with one more day with fibromyalgia. But I’ve made 8 years. And no matter how hard it gets, I can say that I’m surviving it. And that’s something fibro will never take from us. That we are survivors, we are WARRIORS. And by raising awareness, we can get actual helping medication, we can get a cure. Because we deserve that. So I’m asking you guys to stand up, and wear purple, share, like, comment, whatever because we with fibromyalgia and chronic illnesses do not deserve this. And maybe if we all raise awareness for it that we won’t have to deal with this forever. Cause I know for a fact us warriors are SO strong. But that doesn’t mean that strong people don’t get tired. So let’s all please raise awareness so that we can come up from this nightmare one day. Thank you. 💜

Ex Friend Rant...

So, the friend that I let move in (for free for a few months, then she started actually paying bills), use my car (which she actually severely  damaged and then didn’t tell me until after I saw my busted hubcap and noticed that it was pulling hard to the left and shaking, despite it driving perfectly straight since, oh, 2008 or so?), acted as a therapist for and tried to build a business with is mad at me for not wanting to by physically intimate with her. We had a lot of discussion about my asexuality, mental trauma dealing with physical touch (not to mention my fibro being so sensitive that just brushing the wrong spot on my should sends me into a flare that lasts between 2 days and a full week), and overall disinterest in romantic relationships.

Then she told me that I didn’t do enough to support our business (despite knowing that my fibro is super unpredictable)... I made us a tumblr, a patreon, updated all our etsy listings, designed a logo and came up with the name, printed us both business cards (and labels for products), and offered to use my google voice number to act as a buffer between her and her clients that were driving her crazy, in addition to making a bunch of oils and herbal blends to sell. She, on the other hand, reads tarot cards in shops and... that’s about it. I specifically asked for some help setting up our facebook page because she’s been running one for a while and I barely ever touch facebook, and she never helped out. I also asked for specific goals with deadlines to get me motivated, and she would always tell my mom that she thought I was too sick to handle anything, despite telling her that giving me things to do brings me out of a slump.

There’s a lot more I could say, but who cares? I just don’t get how being told that you’re my best friend and considered family isn’t enough. I’m so sick of the jealousy and feeling like a piece of meat, or a prize to be won/bought.

Sorry for the rant, thank you if you read it. I’m just tired of this shit.

no matter how positive i try to be about having fibromyalgia, there are some things that i can’t get used to and am really struggling with.

i miss being able to run. that was something that i battled hard to learn to love and i had finally done it until my left knee started to hurt so much, i was prone to falling if i tried to run. that was the first fibro flare up for me, though i didn’t know that’s what it was yet. i kept trying to run and all that happened was i hurt worse and had to spend a week or more just resting to recover from one running session.

i miss heavy lifting. i kept trying to keep that up, too. even restarted a gym membership so i’d feel like i “had to” go & work out. all that did was make me hurt worse, but i didn’t feel lazy anymore.

 however, now, it’s gotten to the point where i can’t even attempt those things without serious injury due to physical weakness. i can barely walk long distances without having to spend at least two days of recovery. those of you who followed my fitness journey know it was not an easy thing for me to learn to love. i try to focus on what i can do, but i miss physical activity that left me breathless and with the good kind of pain, not this shit.

my dad is going to try to create a stand for my bike to be used as a stationary bicycle so that i can at least try to maintain some activity that’s gentle on the joints, so i don’t totally lose my mobility because that’s my biggest fear. i definitely don’t have the “milder” end of fibro and i fucking wish i did. people keep saying working out is the “only thing” that keeps symptoms off, but then others say what i’m saying, which is if i do that, then i have to have at least three days of recovery and for some reason, that isn’t something i’m too keen on doing every week. even then, the amount of activity i’d get in doesn’t equal or come close to the amount of resting i would have to do after. but good luck trying to get a doctor to believe you! “just work through the pain, it’s the only way” um, no, dude, i literally... i fall if i try to do that? i faint? i scream in pain and... fall. and i’m not the only one with this saying that. a lot of sufferers say that. that’s the other thing i can’t bring a positive face on. how doctors act with it. and i know not all do that, but most do and in a small town, that might as well be all. i have a specialist i’m supposed to see, but even then, that risk still applies because he’s not “only for fibro patients.” and i’m so fucking tired of being told that i don’t know what i’m saying when i say i can’t work through it. i went from being 160lbs, with muscle i’d never had, running was a joy even though it had been torture before to back up to 195-200lbs, walking causes too much pain if i do it for longer than 20 minutes, and muscle? that’s a thing of the past. and i hate it! how can you look at me, knowing my history and what i’ve come through & tell me i’m just not working hard enough? that’s what my doctor whose seen me since i was 5 told me. 

if they get me on medication to help regulate the pain and get it to a manageable state, then maybe i can think about trying to get that active again, and i really hope they’re able to do that because i’m tired of not being where i was, where i *know i can be at.*

i’m tired of only reading, writing, gaming & watching shit. i’m tired of being afraid to go to a store because of having to force myself to stay in bed for a full day after or risk fainting or falling because i dared to be a little bit mobile.

i miss running. i miss feeling like i was one step away from flying. i miss the repetitive motion. foot, pavement, push, air, repeat. 

axiolotl replied to your post: I’m doing student evaluations for the classes I...

holy fuck I don’t know if there’s like…an Italian equivalont to the ADA but that shit is sueable grounds in the US

I think there is but I also think fibro isn’t covered by it bc if it’s in the list of invalidating conditions it was only added very recently (I know last year when I was diagnosed there was a petition to get it added) he doesn’t know I have fibromyalgia bc I try to avoid disclosing it to professors unless it’s absolutely necessary and when he called me out I was usually feeling too bad to hold a convo on that and I forgot to tell him later. and he does call out anyone who gets distracted, so it’s not because I’m chronically ill, but... like... even if someone doesn’t have a chronic pain condition or focus issues, it’s not that far-fetched to think they might need 2 minutes to breathe once in a while. like it’s not so much the 1h30 lessons, we had them for other classes too, but the fact he’ll point it out if you’re distracted. I’m not making noise or anything, I’m just sitting there having a small break, I know I’m missing stuff but it’s between missing those 2 minutes or the rest of the lesson. sometimes it’s not a small break because I just can’t follow the lesson fully because I’m too sick, but again I’m not disturbing anyone and it’s the only way I can be in class and hear what you’re saying. not everyone can come in with a flu and only struggle a bit with his integrals like he does (he did it once this spring he had like 38° temperature, I’d just gotten back to school from a week of flare-ups and spent the entire lesson in a panic I’d get a flu and miss an entire month)

attendance is not mandatory tho, like he won’t penalise you for not being in class every day, but also when like half the class had to miss 2 days because we were going on a trip to CERN he acted like it was a tragedy and left us an hyper-detailed reading list of where exactly what he did those 2 days was covered, and I agree quantum mechanics is hard enough if somebody explains it to you, but that should be a reason to make your lectures more accessible, not even worse.