Naps

So I’ve been having to have alot of naps recently thanks to my flare up and the painkillers the Dr’s have put me on ar knocking me out completely.

My friends don’t understand that I will be able to talk to them one minute and then I’m passed out the next, pretty much dead to the world for the next two hours and then when I wake up I’m just in pain.

I know for them this isn’t something they experience in everyday life and probably never will but I just wish they could experience it for one day so they knew why I get tired so easily and why saying “sorry, hope you feel better soon” really isn’t that helpful.

Some of them are really good and don’t mind me having to cancel plans because I’m flaring or way too tired or they’ll change plans to sitting on the sofa watching films and order pizza/Chinese /whatever else we feel like and letting me nap while we chill out just so I can have some company. I hope every one can be blessed with having some friends like this because I honestly don’t know how I’d survive some of my bad flares without them now that I don’t live with my parents.

Friendly flexibility reminders

Take it from someone with hypermobility syndrome

  1. Those “super cool flexibility tricks” you see contortionists do on YouTube or America’s Got Talent type shows are fun if you rarely do them (once a month or less), but please be aware these “fun tricks” but a LOT of stress on the joints
  2. Seriously these people who make a living off of being super flexible and doing all kinds of tricks (put themselves in a tiny box, basically make themselves look like they have no spine or collar bones, etc) are going to be CRYING in pain 10 years down the line. They are forcing the joint to move regularly beyond its typical range of motion. That’s why this is very stressful on the joint.
  3. It’s ok to stretch and gently increase your flexibility, but heed whats said above about those super flexibility party tricks

anonymous asked:

do u have to be double jointed to have EDS or a hyper-mobility disorder? My joints have always slightly dislocated themselves constantly but now its getting bad and im usually in pain and my friends all think its hyper mobility bit idk bc im not double jointed

Double jointedness isn’t an actual thing in the sense that your joint is double or anything, just hypermobile. If you’re having dislocations/subluxations, chronic pain, or other connective tissue disorder symptoms, looking into those conditions is definitely not a bad idea. While some hypermobility must be present for a diagnosis, there are many kinds and you don’t have to be the most flexible person in the world. Many people with EDS are actually quite stiff and don’t realize they have hypermobility because they’re may not be flexible in the way people often are. Everyone is different and you don’t have to have the same kind of hypermobility as another person. 

You may want to look into the Beighton Scale if you haven’t, as it illustrates some types of hypermobility seen in people with connective tissue disorders. I don’t like the beighton scale as a diagnostic requirement, but it can be a useful tool for learning about your situation. 

Hello friends with EDS and POTS I need help 🙃

I think I might have pots but I don’t know how to go about getting diagnosed or checked out. Some things I’ve been experiencing:

-bad heat intolerance (even the slightest heat makes me so hot I’ll be sweating buckets)

-dizziness when standing/random feeling of “I’m about to pass out/faint” while standing or walking around

-random heart racing or palpitations at various times of the day

-heart racing after minimal physical activity (like if I climb the stairs, when I reach the top my heart is pounding and my ears are ringing and I’m sometimes dizzy)

-legs get all blue and purple and red when standing for too long

-migraines (which I’ve had all my life)

These are some of the things I’ve been keeping sort of track of as potential pots symptoms that I can pick out from my EDS symptoms. It just has gotten worse with these symptoms so I’m going to try to get a handle on it. Please help 😫

Disabled people who can walk short distances should not have to fear parking in a disabled space and walking into a store. 

 Disabled people in wheelchairs should not have to fear moving their legs or briefly standing up. 

 Disabled people should not have to fear using a cane on their bad days.

Disabled people shouldn’t have to feel weary about having too much fun and being seen enjoying themselves.

 Disabled people shouldn’t have to live in fear of getting attacked, getting called a fake and even getting reported for benefit fraud just because they don’t fit the ableist profile of what you think a disabled person looks like and acts like.

Disabled people deserve to be able to safely leave the house and live our lives without fear and judgment.

used to be I hated my body cause I thought it looked ugly, now I hate my body cause it’s the functional equivalent of a 1998 Honda Civic with 200,000 miles, questionable brakes, temperamental AC/heating, and terrible gas mileage that’s liable to break down at any moment in the middle of the fucking road. and the seats aren’t even comfy  

I recently saw a pain scale with the caption “if you can still talk, your not at a nine” and it really really bothered me. One of my doctors (who works extensively with teenagers with CRPS) said that one common theme he sees in his patients is a complete lack of reaction to pain. He told me that when he performs procedures and tests that are objectively extremely painful, often the teenagers will be smiling and cracking jokes, even though he knows that they are in excruciating pain. At nine I can carry on a conversation (not very well, because at this point things start to get really cloudy for me, but still a conversation). During my nerve conduction study (If you’ve ever had one you know how awful it is, and if you haven’t, it involves a six inch long eighteen gage needle stabbed deep into your muscles over and over while you clench and relax them as instructed.) i chatted with the nurse and played games on my phone. It wasn’t that I wasn’t in pain, it was just I was also outside of it. For teenagers with chronic pain a disassociation from themselves and their bodies is common, even expected. If I “grounded myself”, saw myself as In my body and of my body and nothing else I don’t know how I would survive. In order to live, to get out of bed or wash my hair or put on pants I have to separate ME from my body. It’s how I can pop my shoulder out of socket and put it back in during a conversation. It’s a matter of survival. And I’m tired of people saying that my pain isn’t real or valid because of it.

parents not believing their disabled child is actually disabled and forcing them to go beyond their limits is abuse.

parents calling their disabled kid a burden or a problem to them is abuse

parents using the disabled kids story to their advantage and making it more about themselves is abuse.

stop excusing abuse just because the victim is disabled.

Friendly reminder, you are allowed to break. You are allowed to ask for help. We were not created to rely solely on ourselves. Don’t get me wrong, you can save yourself, and you can be your own hero, but it’s also perfectly ok to drop your guard, crumble, and have someone pick up the pieces and put them back together. You don’t have to fight alone. It’s ok to let someone fight for you, along side of you. You don’t have to be strong all the time. Let someone pick up your pieces. It doesn’t make you weak. Stronger together. 

Just because someone with your illness has a job, goes to school, or can do things you generally cant, does not mean youre faking it.

Dont compare yourself or your illness to them, every illness affects every person differently.

Youre doing the best you can, remember that.