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.

How is everyone doing today??

It’s okay if you need to vent! This post is open to everyone. I genuinely want to know how you all are doing today?

So disappointing

Hey everyone! I have a question for you all.

For starters, I’ve been having issues with my heart rate for over a year now. In the past, I’ve had problems with pericardial effusion and pleurisy a few times. My heart has almost failed twice within the past two years. I can’t remember exactly when, but I’ll say around…April of 2021? Is when my heart rate issues became worse. My resting heart rate is 76 - 88; usually, this is when I’m lying down or sitting for more than 20 minutes. When I sit up completely, my heart rate will go to 110 - 125 or 136. When I stand, it goes to the 140s or 160s. After showering, my heart rate hits 180 - 191. So far, the highest heart rate I’ve had is 198. My symptoms for the past few months has been stomach pain, brain fog, nausea, vomiting, headaches/migraines, dizziness, lightheadedness, random blurry vision that’ll last for up to 10 - 20 minutes, chest pain, shortness of breath, skin sensitivity, painful red patches on arms, leg swelling, painful/uncomfortable bloating, weakness, fatigue, a few fainting spells, and much more but I can’t remember them all at the moment. My current diagnoses are Lupus (SLE), Rheumatoid Arthritis, TMJ, and Raynaud’s syndrome.

Is anyone going through this or has gone through this? If so, what tests were run or recommended? Did you get a diagnosis?

I really need to know. I’ve been dealing with this for so long now. It’s interfering with my day-to-day life and daily activities. I can’t even talk or laugh without my heart rate going up to 126. The lightheadedness and dizzy spells are happening daily, and I’m afraid that I’ll pass out. The stomach issues I’ve been having have made it difficult and painful to eat and drink. It feels like my stomach is on fire 24/7 and being ripped open every once in a while. My doctors think I could have another possible autoimmune disease, either fibromyalgia or a connective tissue disorder (I dislocate almost daily). I’m not trying to self-diagnose myself, but I’ve been wondering if POTS could be another possible diagnosis? From what I’ve been able to research, the symptoms I’ve been experiencing are pretty similar, but I know Lupus can be the cause behind a lot as well. I also know that Lupus can be the cause of POTS. I just want to find out as much as I can to bring some things up to my doctors since they’re just as confused as I am, haha. I’m tired of dealing with this and need relief.

Sorry for being MIA! I’ve been battling with my health for a while. I may finally have a new diagnosis for what’s been going on!

I am in so much pain today. My mental health is taking a hit too. I have no one to vent to since I’m the “therapist” or “sunshine energy” friend, and no one wants to hear about my issues. They’ve shown me that… I feel alone at the moment. I try so hard to keep up my bubbly and optimistic persona, but it’s hard today… it’s hard to smile genuinely. It’s hard even to think that this will get better. I’ve been in a full-blown lupus flare for two years, which has caused my health to decline rapidly. I’m a very independent person, so losing my independence slowly is fucking with me. I’m on the verge of a breakdown. I just want the pain the stop…I want to stop feeling so tired and weak…I just want it all to stop.

I like to have this saved in my phone so I can show friends, family, or random people who are curious to understand the spoon theory and for them to get a better understanding of what we have to do/think about every day.

My spoonie name is Cancel-y VonYogapants! Lol seems about right.

What is your spoonie name??

edserhatesyou:

I want to pre face this by saying I’m not suicidal before someone try’s to offer me the number for a hotline or whatever.

I’m at a point where I feel like I’m running out of options and I can’t keep going. I don’t shower one day to the next and I don’t sleep either.

Today I requested my GP start me on bridging HRT (testosterone) as I won’t be able to go to a NHS gender identity clinic for years because of how long the waiting lists are.

The problem is I worked myself up so much to ask that if now I don’t get the outcome I need I’m going to struggle. I already struggle everyday, in the past few months I’ve lost 15 lb because of my mood effecting my appetite. I’m loosing the ability to do things every day because of my lack of sleep and food as well as my already low mood. I’m really struggling and I can’t cope.

I’ll force myself to keep going because I have too but it’s getting harder each day and all I want is to just turn to dust and become a distant uncared about memory to my loved ones but that’s not possible. I feel trapped and I don’t know what to do.!

This is a vent post and I want to reiterate I am not suicidal. I have no intention of committing suicide but I am struggling and needed to vent my emotions right now.

I wanted to update. I’m still in this headspace and my doctor did hours of research and unfortunately the GMC updated their advice so unfortunately he can’t unless he gets the go ahead from a specialist now which I’ll have to pay for or wait longer for the clinic.

At the moment I’m working on saving to pay for my appointment because I need this.

lifewithchronicpain:

greyhavenisback:

lifewithchronicpain:

If a healthy person suddenly felt my pain, nausea, and exhaustion they would call out sick and maybe even go to the hospital. But just like everyone else with chronic illness, the longer it goes on the more life is intolerant of your perpetual health issues and all you can do is deal. If you became disabled tomorrow you either have to deal or die.

How one copes varies, but one thing is for sure, unless it happens to you, (and for real I don’t wish this on anyone) you cannot possible understand what it’s like. Please respect that and stop acting like you’re our doctor when you find out our conditions. We’ve heard it all and done it all.

And please stop telling us to push through. You wouldn’t push through flu, or a dislocated shoulder, or fatigue so heavy you feel like you can’t breathe. Stop telling us we’ll feel better if we just did X or Y. Some of us have been dealing with this for a lifetime. Trust us, we know.

Exactly. Dealing is not acting like the disability isn’t there. It’s resting when you need to, making the choices you need, and planning your future with the disability in mind. If we just keep “pushing through” we will burn out faster than a dry stick.

snailsrightsactivist:

dtsguru:

voidbat:

painandcats:

- Make sure the place where you’re going is accessible!  Your date might opt to use a wheelchair that day, and if they’re using a cane, best to make sure there aren’t a silly number of stairs involved in whatever date you’re considering.

- Call ahead to the place to see if wheelchairs are available to borrow if you’re going somewhere that involves a lot of walking and standing around, like a museum.

- If your date is using a cane, they likely only have one arm to hold things.  Consider bringing their food/drinks to the table along with yours– let them claim a booth while you get the food!

- Be prepared and willing to be someone’s physical support sometimes, especially if your date is having a rough leg day.

- Be prepared for a Plan B Date: it’s so awesome to have a back-up plan for the date if the day comes around and your person is spoonless.  Believe me, it’ll mean a lot.

i just really want to add some from my own experience:

• ask yourself, really ask yourself if you’re fine with plans being cancelled at the last second, cancelled mid-event, and for plans to often be “come over to my house and lump on the couch with me” - if you aren’t? don’t date somebody with chronic pain/fatigue. especially if you will take that sort of thing personally and/or hold it against the person. if you date me, you date my disabilities. i have to deal with them, so do you.
  
• if you are grocery shopping with someone who uses a mobility aid like a cane or rollator, and that person is pushing the cart? DO. NOT. MOVE. THE CART. while they are using the cart, it is taking the place of their normal mobility aid and moving it is like moving their leg. DON’T DO IT. i have fallen in grocery stores more times than i want to think about due to an ex who couldn’t get it through his head that THIS IS MY CANE RIGHT NOW and would just grab the basket and drag it somewhere.
• if your date says “no, it’s fine, i’ve got it” when you try to do something? let them. just let them. my disabilities takes so much away from me, the things i can actually do are things i am proud of. it makes me feel better to be able to do things for myself. i detest nothing more than an able-bodied person INSISTING on doing something that i can do myself, even though i’ve said multiple times that i’d prefer to do it myself. it says volumes on what that person really thinks of my abilities as a functional human, none of them positive. i get that you’re trying to help, but i promise, taking away what autonomy we do have? not helpful.
• learn to tell your date beforehand what the date will entail. learn to look for the things your date would need to know. i had an ex that never factored in things like “walking half a mile” or “it’s a three story walkup with no elevator” because those things were no problem for him. i, on the other hand, would arrive at the destination crying from pain and unable to enjoy a damn thing - and exhausted in advance by knowing i’d have to repeat the journey just to get back home. don’t be afraid to ask your date what things they need to have taken into consideration. ask what accessibility options are necessary for them when it comes to cane/wheelchair access, how much access there is to regular seating, how much walking will happen, how many stairs there are. if you go to a movie and the only parking is way in the back, ask if they’d rather you drop them up front while you get a spot - because sometimes traversing a large parking lot is the difference between watching a movie and sleeping through it, or being too distracted by pain to follow it. by and large, we know our limitations and it means the world to have someone say “hey i want to take you to this exhibit, i think you’d really enjoy it! there’s several stairs to the entrance and the wheelchair ramp is kind of obnoxiously far away, so it’s either a bunch of walking or deal with stairs to get in there, but once you’re inside there’s a lot of comfortable benches and not a whole lot of walking.” because they thought about how you navigate the environment. 
• if your date is using a rollator or wheelchair, make sure your car (or whatever form of transportation you are going to be using) has space to put it. don’t ask me out to the renaissance faire and then show up in a CRX and look confused when i say my rollator can’t go in that so i’ve gotta stay home.
• BE. PATIENT. this shit is unpleasant enough for us already, the last thing any of us need in our lives is another able-bodied asshole making us feel like burdens. we can’t do everything as quickly or as easily or sometimes at all. sometimes we need your help. sometimes we have to cancel plans. even big plans. even big expensive plans. it’s no fun for us either. sometimes we have to back out of shit halfway through because our bodies have absolutely hit the wall and have failed us. i’ve had to abandon a cart full of groceries before and sleep in my car before i could even manage to drive home because my body just gave the fuck out with no warning. can you imagine? just for a second? imagine being young enough to still get carded for booze and your body literally collapses and you have to almost crawl to your car, sitting in the middle of the floor several times on the way. don’t get frustrated with us, we’re doing our best. it’s just harder than you can imagine.

Also remember just because the cane isn’t there doesn’t mean the disability isn’t there. All of these points are still relevant. Be aware. Be considerate.

I want everyone to see this

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

bisexualbaker:

bisexualbaker:

Tips for baking with arthritis and other hand-related chronic pain

I luckily haven’t had to deal with much chronic pain or hand pain yet, especially with regards to baking (crochet is another story). That said, these look like some pretty solid tips! There’s also some in the comments section.

As this link nears five hundred notes, I’m just… very quietly touched at how many people are sharing it. Whether they need it themselves (or think they will someday), or know someone else who might need it, the fact that all of them are sharing the sentiment of “I want the people who love doing this thing to be able to keep doing the thing that they love” is… yeah. It makes me happy.

“Just do yoga! Your health care team don’t know what they’re talking about!”

Me after trying yoga:

I know it’s not the worst aspect of being disabled, but I loathe the sheer amount of rubbish I generate from all my medication boxes and blister packs, and a lot of it isn’t recyclable

Serious question (not agere related)

What types of jobs would be suitable for someone whose knees are getting worse?

Backstory : over the past (I’d say) 6-7 months, my knees have been starting to hurt. The past week they have been getting so bad I’ve had to use my cane daily.

I need a wheelchair but to get a wheelchair I need a job. I also need to get a job so I can move out

well. today is the first day my back/shoulder/neck pain has made me cry since my spinal fusion 17 years ago.

yellowplumfruit: