#fibromyalgia

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wormsslime:

somanyjacks-writes:

I don’t know who needs to hear this, but if the phrase “self care” doesn’t resonate with you, try calling it “system maintenance” and see if that clicks.

bottom-of-the-riverbed:

I cannot put into words how much I do not care about people who ‘fake being disabled for benefits’ cause a) it’s wildly blown out of proportion, is a very damaging rhetoric and is a huge waste of time and resources b) I do not trust the government to decide or be able to tell who is and who isn’t 'faking’ and c) if someone is going through that much hassle for such a comparatively small reward then they probably need the money and I’d rather they have it than not.

Oooohhhhhh PPPRRRREEEEEAAAACCCCHHHHHHHHHHHH!!!!

Also, do y'all know how BORING being disabled/chronically ill and not being able to do stuff can be? Every “normal” person quits after a few months because there are only so many movies/TV series to watch, online games to play, books to read, records to sort, cupboards/closets to empty and rearrange, stuff to do around the house, blankets to knit… Believe me. (Insertion: Would I be glad to be able to do all that.)

So you wanna go outside at some point. But guess what: Ppl will ask you what you’re doing outside during daytime when everybody else is working. So you should be able to explain what kind of disability you have. And then ppl will ask you: But… It can’t be that bad, you’re able to take a walk, so why aren’t you working?! Well… Believe me! You’ll only be able to have that conversation a few times before you get super annoyed and try to stay at home (because you’ll meet ppl who know you literally everywhere and every time you’ll have to explain that, yes, you’re still disabled/sick, and no, you’re not better yet, and also no, you’re still not able to work). But at home it’s boring again.

In conclusion: Even if somebody was trying to fake it, they wouldn’t be able to keep the scheme up for very long because basically, non-disabled ppl don’t have the eagerness to do it. It needs a lot of physical and emotional strength to be disabled - it is almost impossible to fake it over a long period of time.

sarahbeara113:

To the people who couldn’t get out of their bed today, I’m here for you…

To the people who skipped showering because they didn’t have the energy, I’m here for you…

To the people who cried in agony through their shower, I’m here for you…

To the people who suffer daily but no one believes them, I’m here for you…

To the people who feel like they’ve lost or are losing their youth to their medical issues, I’m here for you…

To the brave people fighting for their health every day, I’m here for you, I support you, I believe you. Your feelings are valid, you are loved, and I will stand behind you.

Introducing my mom, who has fibromyalgia, to chronic pain memes. This should be fun

Chronic illness conundrum #45:

Is this my chronic illness, or am I coming down with a cold?

It’s ok to be disabled and still want kids. It’s ok to not want kids because you are disabled. It’s ok if you just don’t want kids.  

Maybe you’re newly diagnosed with Fibro, or ME, or EDS, or some other chronic condition that’s knocked you off your feet. You might be staring down the barrel of what life might look like for you now and wondering if you have to give up on your dreams of having a family. You might be wondering how on earth you will be able to keep up with your kids. Look, I’m going to let you in on a little secret. Nobody can keep up with their kids. Not even the ableds can keep up with these little balls of dynamite. My kid is not even walking yet and she gets into everything. She tears around the house on her hands and knees and pulls herself up on stuff and chases the cat and everything a curious little child is supposed to be doing.

This is what baby proofing is for! She’s safe. She can explore all she wants. We have baby gates, the furniture is anchored. We don’t leave out stuff that would be unsafe for her and we make sure the floor is clean to reduce the amount of lint she shoves in her mouth. We have a open floor plan and I can keep an eye on her at times, even if it’s a bad pain day and I’m mostly parked on the couch. We read books and cuddle and talk and sorts of other wonderful things.

If you are thinking “I can’t take care of a kid, I can barely take care of myself,” I would say that’s a valid point, but not one that you can’t address. You will build coping skills and learn your way around your body’s needs and figure out work-arounds for all the things you need to do to lead a healthy, balanced life (whatever that means for you). It will take creativity. It’s a process, and one you should be undertaking anyway, whether you are planning for a family or not. And you don’t have to figure it ALL out before baby arrives. Life will always be a work in progress. 

My kid is still little. I know there will be new challenges. But think back. If you had a good parent, what was it that made them a good a parent? I promise you it wasn’t “My mom climbed mountains and ran around with me at the park.” It was “My mom held me when I cried. She supported me. She believed me when I needed her to. She was patient and fair and encouraging. She sat (sat!) in the front row at all my dance recitals.” And if you had a painful childhood, these were probably the things that were missing.

Also keep in mind, you will probably have help. We all want to believe that we will start a family with a supportive partner that sticks around, and I definitely recommend it if that’s possible. But other types of families exist. Maybe it’s you, sometimes your ex-partner, and a supportive grandparent. Maybe it’s you and a close friend your kid takes to calling “auntie.” Support makes a big difference and it’s ok to say yes to the help that’s out there.

Another thing I wish someone had told me before having kids: they don’t just take energy from you, they give you energy back. Loving my daughter is the most energizing thing in the world. I am filled with joy every time she looks at me. I would do anything for her. If your baby needs you, you will dust off the old stash of spoons you didn’t even know you had.

Dear Chronically Ill, 

You won’t get better, but you will get better AT being sick. You will raise your baseline slowly with healthy habits. You will get ahead of what you need, you will learn your body, and you will laser focus your priorities until you can manage. 

Hang in there,
Your Future Self

FINALLY got a little rack* for storage in the laundry room! This area has annoyed me since we moved in last July/August. My back doesn’t like reaching that high and that far away to get things off the shelf, and I don’t want to overload it. And, I actually swept and mopped the floor before putting it in. Even wiped down the washer and dryer.

Took about an hour to put the rack together and then clean and reorganize. Break time!

*The rack is a bathroom 3-shelf space saver but who says I can’t use it anywhere I want!


Just a friendly reminder to be gentle with yourself. We can be our own toughest critics sometimes, b

Just a friendly reminder to be gentle with yourself. We can be our own toughest critics sometimes, but we’re all doing the best we can. Also, the week is more than halfway through - so there’s that!


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I feel less alone
By myself
On a deserted beach
In a foreign country
Than I do
In a room full
Of people

I know

“Pain that persists is terrifying because it sets off the amygdala, before the parts of the brain that modify our emotional responses can be turned on.

The result is that we re experience the trauma that caused the pain and this trauma is continuously reinforced by it.

The terror demoralises us, and as pain processing areas expand in our brain, we lose our full ability to problem solve, regulate emotions,resolve conflicts, relate to others, distinguish other sensations from pain, effectively plan and even remember our past experiences to control pain.

Every time a person worsens, it feels like it is here to stay, and we must avoid it at all costs.

The amygdala is not a place of moderation.

It is a place of extreme emotions, fight/flight and post traumatic stress disorder. ”

Norman Doidge, the brains way of healing

IMAGINE how much better you would’ve felt if your doctor had explained pain and how you were feeling like this instead of telling you not to think about it. I wish I knew this when I was begging for help, traumatised by my pain

pureholistic:

Stop putting so much pressure on yourself

to be better

to change

Please stop and know that it will happen

you have time

Becoming is a process

I spent so many years fighting

Fighting for my body
Fighting for my mind

Fighting for the right diagnosis or at least one that made sense and treatment worked

Fighting to be seen and heard by doctors

Fighting for validation

I’m finally at a place where I can rest

The “right” diagnosis finally came and a year later im improving

No more fighting
No more surviving

I’m living

I’m living small but I’m living a beautiful life

Don’t ever give up

You will heal and keep healing

When you have a mixed bag of chronic conditions and are flaring but not sure which one is flaring so you take a medication hoping it will alleviate all 12 invisible illnesses

Travelling with chronic illness is no joke

Where do you stay?
Is there mould?
Smells? Chemicals? Loud noises?
Stairs?

Not to mention all the planning, actual movement, packing, unpacking, activities.

And the money side of it too

So much goes into it that I took for granted before that now is just wow. Fun stress but stress

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