heyatleastitsnotcancer:

Here’s your regular reminder that hypermobility does not equal ehlers danlos syndrome. 20% of the population is hypermobile. Benign hypermobility is a thing. EDS has a long list of symptoms and criteria that need to be met to be diagnosed and hypermobility is only a part of that.

Stop equating hypermobility to eds, especially to internet strangers.

heyatleastitsnotcancer:

How to help millions of disabled Americans

The SSI Restoration Act of 2021 is currently proposed to congress. We have until 2023 to get it passed (this post is dated March 30, 2022). SSI is a type of disability payment for disabled Americans. The bill will increase the SSI payment to the poverty level. Right now the maximum payment is 9528$ a year. It will allow disabled people on SSI to marry and not lose their income which they cannot do currently. Disabled Americans do not have marriage equality currently. It will increase the asset and income caps for SSI among other improvements.

Friends and I made a website that has all of this info plus a really easy way to send an email to your state reps. If you click the link below, you can send a letter of support for the SSI Restoration Act to your state reps. It’s already written and takes only a few minutes. Seriously it is ridiculously easy. These emails have more pull to reps than resistbot so please fill out if you can!

With our letter campaign, people have sent over 5,000 letters to representatives! We’ve decided to make a new campaign with updated information to send to reps. So if you have already sent one through fixssi.com, you can send another! And if you haven’t please take the time to do so!

Now is the time to pass the SSI Restoration Act

We also have a Facebook called “Campaign to Fix SSI” that you can follow for regular updates as well.

And if you are able to call state reps (which has the most influence) our website has a call script and lists of your reps phone numbers. Please follow the link below for that.

Make a phone call — Fix Supplemental Security Income in 2021

Please send a letter to your reps and boost! It could change the lives of millions of disabled Americans.

We’re almost at 1000 signatures for the new letter campaign AND we got a bunch of new cosponsors on the bill. We’re at 68 cosponsors now as of 4/28/22

Please keep contacting your reps and raising awareness on social media.

What I now realise know about stress and anxiety, is that rather than a dysfunctional thought pattern, weakness or worry - it can get be an overstimulated state of being.

Unconscious. Subconscious. Bucket almost overflowing with accumulated things. Viral load. Inflammation. Trauma.

Stress can be excitement- good or bad

It isn’t always the stereotype worrier, neurotic, over thinker

It’s just an undercurrent of overwhelm that can manifest in even the most calm person

On the plus side

My social fatigue has disappeared now that I’m isolating and distancing

I now have extra energy

It’s just a belief and a belief can be changed

I didn’t know feeling like that wasn’t normal, I just though I was broken, like I wasn’t enough

I thought maybe if I just studied more, put myself out there, tried harder to fit in, that things would change.

I didn’t know that the fatigue wasn’t normal

The pain wasn’t normal

The dizziness and blackouts were not normal

Until I did.

And then I was dismissed so much that I really felt abnormal.

There were so many signs that my health was declining
Yet instead of realising that something serious was happening, I blamed myself for not trying hard enough for
Not being good enough

A long life of being house and bedbound with chronic illness

Or

A shorter life filled with no pain and ease?

Shout out to the people who disappear when the are not well and don’t broadcast it to everyone who will listen so nobody actually knows that you are going through a tough time

Not everyone projects or need connection at that time but you do need to know that people care for you even if you are not actively seeking it.

Keep cocooning if that’s working for you

Come out when you are ready

You are seen and cared for

Lots of love xxxx

When will we learn that self care isn’t optional
It’s vital

When will we learn that self care isn’t optional
It’s vital

Been fighting an infection for the past 6 weeks and now I’ve caught the flu. I feel like apsolute death. I just feel so ill and so irritated. Not sure if I want to just sleep, shout at someone or cry. I’m in so much pain :(

psa: you’re allowed to stop treatment. it’s okay to stop because it doesn’t feel right for you, because it’s not working, because you’re completely drained, because you’re sick of false hope, because you’re tired of feeling worse rather than better, because it’s costing too much, because it doesn’t feel worth it. some conditions are extremely difficult if not impossible to treat successfully. it’s okay to admit that and say, you know what, i tried my best, i’m done

yeah it’s not always good to label people and ‘put them into boxes’, but also sometimes people like discovering boxes and placing themselves inside because they’re cosy and comfortable and they fit just right. words like fat and black and disabled and gay and trans aren’t bad, and people are allowed to put themselves into boxes if it helps them establish their identity

chronic illness has this really fucked up dichotomy where you spend your life trying to find some sort of purpose but end up using all of your energy doing so