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#chronic illness problems
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Sometimes i find myself putting off taking pain killers usually with the mental reasoning that I'm not in a really really high amount of pain so I dont need it yet.
This is a reminder to myself and anyone out there that needs it that you dont have to wait to be in a really high amount of pain before you take pain relief or do things that will make you feel better.
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akindplace · 4 months
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The sky looked so beautiful, so blue with some clouds, a sign of rain that might come at night. I twisted my ankle and fell a while after taking these pics, but at least I got to enjoy a little walk, hopefully my ankle heals soon cause not being able to walk sucks
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Canceling plans with the same person twice in three days because of pain and honestly, I’m just so tired. I’m tired of pain running my life. Tired and angry
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98lindsey · 3 months
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Me sitting here wondering what this squeaking sound is only to realize it’s me wheezing. 🤦‍♀️
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xanthesaurusrex · 1 year
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Abled people need to stop correcting me when I call it the disabled toilet. Accessible toilet is not incorrect but it is useless as the supposedly "correct" way to refer to a disabled toilet because it is accessible by DISABLED PEOPLE!
Disabled is not a dirty word
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asphyxiatedredherring · 11 months
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Fuck the having fun to having a flair pipeline
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ichabodjane · 1 year
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Writing fanfiction as a chronically ill person like if I can't fix my fucked up body, at least I can fix the problems of my favorite fictional characters.
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septembersghost · 6 months
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the level of physical pain i am in is so extreme
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pastafossa · 10 months
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Test run today of my makeup for my Jessica Jones cosplay. I've realized I haven't actually every tried to wear a mask when also wearing foundation so figured I'd see what happens while I'm at meetup tonight. I'm hoping it doesn't leave weird smear lines or anything since I want to take the mask off briefly for my pic with Charlie before putting it back on. We'll see.
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Take it from someone who is chronically ill…
I will try to hear you out when you are offering me health advice. I know it’s probably coming from a place of concern and you think this advice would help. But take it from someone who’s been through this for years. There are some things that just don’t fly well with many chronically ill people. Here is my short list but I’d like to hear from others in the community.
Please don’t recommend:
Exceptions made if the disabled person is asking you for a particular type of recommendation.
Anything ingestible. Supplements & diet changes are really difficult to talk about for a lot of people with chronic illness. Most of us have trialed handfuls of supplements a day and extreme diet changes. It’s often a phase we go through when undiagnosed or newly diagnosed because we don’t feel like we are getting enough support from doctors but we need to try something (ANYTHING) that might help us. Most of us also have GI issues and/or eating disorders. We have learned the hard way what works for our broken bodies. It’s a really sensitive topic for a variety of reasons and chances are the person has done the research and already knows more about them than you do.
Exercise. Disabilities are not all equal and this is especially true when it comes to exercise. Someone who is an amputee or paralyzed might not have the same issues as someone who has migraines or chronic fatigue. Exercise intolerance is real and many disorders are exacerbated by physical exertion. Even things like stretching and physical therapy can be too much or easily done in the wrong way. It’s a sensitive topic with heavy implications that the disabled person is lazy and/or wants to remain sick. Unless someone is specifically asking you for recommendations, this really should be off limits in conversation.
Mind over matter. The mind is capable of amazing things. We are aware of this. Our disabilities are not cured by positive thinking. Some of us may have already adopted our own strategies for being happy while dealing with chronic illness. It is a very individual experience and having an abelist tell us we are “choosing to be sick” is not as helpful as you think it is. Just don’t.
So what CAN you recommend?
Mobility aids and assistive devices. Not only is it actually helpful advice but it’s validating our experiences and shows us that you are comfortable with us showing our disabilities around you. Bonus points for really obscure, new or cool looking mobility aids especially if they are affordable!
Pain relief. Topical creams, ice packs, heating pads, braces, wraps, TENS, etc. Chances are we have already tried it but it shows us that you’re thinking about our pain and on the off chance it’s actually a good recommendation it could be a lifesaver and we will be forever grateful!
Small businesses run by people who belong to our communities (disabled, POC, LGBTQIA+, etc) Don’t try to compare our abilities to disabled business owners but it shows us you recognize we are a part of a community and that you might not be but that you are conscious of it and supportive. Buy from these shops for yourself to show your support or shop gifts for your chronically ill besties. Just be cautious about things that might be triggering to some. Some disabled people appreciate affirmations, “warrior” mentality, etc but others really don’t so choose wisely.
Accessible hobbies. Chronic illness makes it hard to commit to things. Period. We don’t know if we will have the physical ability to do an activity, the resources to do it or if our body will support scheduled activities when the time comes. It’s a huge challenge but that unpredictability can also be super conducive to picking up hobbies. Things that don’t require a ton of energy or scheduled classes. Things that can be picked up for a little bit when we are having a good day and put down when we aren’t feeling well. Most of us love to hear about your hobbies. It’s great to feel included in things when we are often cut off from people because we’ve been deemed “unreliable”. We are itching to talk about something fun with someone we care about. Something that isn’t related to our health or unmet expectations of us. So share your hobby. Share your second cousins neighbors hobby. Google some hobbies that could be fun for disabled people. It’s sure to be a fun conversation.
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catmat · 4 months
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When the going gets tough, denial is all I have.
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My life is exhausting in a way that an abled bodied person wouldnt understand and thats okay. I dont need them to understand. However, i do need them to realise them being "tired sometimes" or "having an aching leg after running" doesnt equate to them understaning my experience. You dont need to understand my pain to be supportive.
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iwant---tobelieve · 1 year
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you know what sucks about POTS apart from.. literally everything? and this is probably tmi because bathroom talk but.. sitting up just to go to the bathroom is absolutely exhausting? I am TOO TIRED to sit. I do not have the energy to do that. I just want to pee but I simply cannot expend that energy to sit up for long enough and I am exhausted now. I'm currently at 114bpm and my legs are shaking
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philosovie · 7 months
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bed bound & living through tumblr. 🫠
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foe-of-fate · 8 months
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Constantly torn between wanting to be seen as more than my symptoms, more than a problem that needs to be solved. More than someone who’s life is only pain and misery.
And also wanting to be taken seriously. Wanting it to be recognized that my pain affects my life and limits some things I can do.
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I understand that your doctor wants to see you before renewing prescriptions, but I put in a request for a refill on Monday and it was denied on Tuesday. I talked to a nurse this morning who set up an appointment for next Thursday. When I told her my nightly medication that I take to prevent migraines will run out before then and asked for a few days worth of meds to be filled to get me to the appointment, they just said 'nope.' Apparently, people are asking for one month to hold them over until their appointments and then after filling the prescription canceling the appointment. So, my neurologist's new policy is to just have her patients go without until she sees them. I really wish I had known that two weeks ago when I probably could have been squeezed in before I run out of meds.
I know that making an appointment was just one of the many balls that got dropped this Fall thanks to buying a house and moving and transferring my job. But it really feels shitty that I'm going to be without my preventative meds for four days just because some people go against the office policy. I'm already so stressed about possibly having a migraine for four days straight and possibly having to call out of work (where I've only been for about a month at this point).
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