#chronic fatigue disease

[69yard]

Chronic fatigue syndrome (CFS): Causes, Symptoms and Treatment

Chronic fatigue syndrome (CFS) Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a complex and debilitating condition characterized by extreme fatigue that does not improve with rest and is not caused by any underlying medical condition. The exact cause of CFS/ME is still not fully understood, and there is no specific diagnostic test for the condition. Symptoms of…

[tumble-tv]

"kill them with kindness" WRONG run them over in your wheelchair 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽

[tiredsn0w]

This can't just be me, right?

[thatchronicfeeling]

July is Disability Pride Month

Let’s celebrate by keeping disabled people ALIVE and SAFE.

Want to know how you can help?

WEAR A MASK. 

(FFP2/3 or N95 give best protection, especially the ones that fasten behind your head)

[chronicallyillandcoping]

Anyone else find it difficult to remember that abled bodied loved ones are gonna worry when we talk about new/concerning symptoms? Like in my mind its just another day,just a bit more pain, just a flare etc. but for them its different and sometimes i find it hard to be mindful of that.

[spookysalem13]

I'm chronically ill. I'm disabled physically and mentally. I live a rough life from day to day. People always tell me how strong I am.

This may be with the best of intentions but in all honesty I'm not strong, I'm very weak from being broken down every single second of my life from my chronic illnesses.

I don't get to live my life, I'm surviving not thriving.

[emmuffins]

I don’t WANT to lie around all day. It’s not “relaxing” or “peaceful” or “restorative”; I’m Miserable.

I WANT to be at my job.

I WANT to hang out with my friends.

I WANT to clean the apartment.

I WANT to FEEL BETTER.

[melodymorningdew]

I cannot fight for my health and fight the world at the same f**king time.

[neuroticboyfriend]

you can trust the signals your body is sending you. whatever physical symptom you're experiencing is real. your pain, fatigue, weakness, numbness, unsteadiness, malaise, dizziness, nausea - all of it is real. i believe you. even if you, doctors, friends, or family dont. i believe you.

you should have never had the idea that you cannot be the authority on your own body put in your head. you are the only person on this planet who can convey what you are going through. no one has the right to take that from you. please believe in and advocate for yourself. and know you deserve to have someone advocating for you, too.

[spoonful116]

There are only four types of people:

1. Those who are disabled

2. Those who will be disabled

3. Those who love someone who is disabled

4. Those who have been temporary disabled

Inspired by Rosalynn Carter's 4 types of people

[autisticdreamdrop]

you don't need anyone's permission to use something to help with your mobility. use those cane, crushes, rollator, walker, wheelchair, etc

[muttren]

i have a disability. more specifically, i have a rare genetic condition called camurati-engelmann’s disease, or CED. it is also known as progressive diaphyseal dysplasia (PDD). it is an extremely rare disorder and only around 300 cases have been reported worldwide.

i figured i would make a post talking about it, in an effort to not only educate others, but to possibly connect with others who suffer from it as well. i apologize for the longer post but please this moment to learn about my disorder.

CED is a skeletal condition that is characterized by abnormally thick bones (hyperostosis) in the arms, legs and skull. the overgrowth in bone causes bone pain, muscle weakness and extreme fatigue. the pain feels like an electric stabbing pain, an ever-increasing pressure sensation around the bones affected, or a constant aching. pain can also occur in joints and they will often lock-up, becoming immobile and stiff. the pain is especially severe during 'flare-ups', which can be unpredictable, exhausting and last anywhere from a few hours to several weeks. this is a common occurrence for us, often causing extensive sleep deprivation from the chronic, severe and disabling pain. when this happens, we are often bedridden or housebound for days or even weeks.

those affected also have an unsteady walk and limp. thickening of the skull can also lead to neurological problems, like hearing loss, vision issues, vertigo and tinnitus. symptoms vary in severity from person to person. there are treatments, however it cannot be cured. pain management is a large aspect of living with this chronic disease.

there is very little awareness and research for CED. rare diseases are severely neglected and overlooked, as are those who suffer and live with them. research is often not considered profitable due to their cost to develop and the limited patient population. major federal funding agencies give preference to research that is likely to have a direct impact on patients.

living with a rare disease is extremely difficult and isolating. it impacts the lives of millions of us and our loved ones worldwide. those of us suffering from rare medical conditions should be entitled to the same quality of treatment as other patients. i am disabled, but i am worth it.

[foldingfittedsheets]

I’ve been sick for such a long time my body atrophied so badly. Not just my body but my mind. Because I was used to that limit. Too much exercise would shoot me into brain fog and exhaustion. It was terrifying trying to expand that boundary because I remembered days where I sobbed trying to walk to the bathroom. I know I’m not sick anymore but my body isn’t so sure.

But Wyvern really was the boot camp I needed to get up constantly and consistently. I went to bed aching every night and afraid I was at my limit but I’d wake up and be functional the next day.

Losing him was devastating but I’m so committed not to lose the progress he helped me make. I’ve been going on walks every day, I finally got to being able to add my mini workout back in.

My betrothed and I are going to the redwoods next week and I’m actually gonna be able to walk and play. It’s such an enormous gift he gave me.

[tiredsn0w]

If nobody has told you yet, or this year, or even this day, I want you to know that what you can do is enough.

If all you can do is an hour or two of school/work, that's enough. If all you can do is go to medical appointments, that's enough. If all you can do is tidy up your room, that's enough. If all you can do is take a shower, that's enough. If all you can do is your hobbies/things that make you happy, that's enough.

If you can't do any of that, and have to lie in bed most days, or every day, and other people take care of you, you're living despite a world that is so hostile, you are suffering so much and still living. You are doing enough.

You don't owe anyone productivity. You don't need to have a job, go to school, or write or draw, or do anything else in order to have inherent worth and value. You deserve to be taken care of. You deserve to be loved. No matter what you can or can't do.

[thatchronicfeeling]

Disability Pride shout out to everyone whose disability...

gets in the way of their sex life

gets in the way of expressing and/or understanding their sexuality

gets in the way of their romantic life

gets in the way of intimate relationships

gets in the way of exploring any/all of the above

[inkdandimpulsive]

Shout out to disabled people who are, ya know, existing with symptoms - whatever they may be. Who are exhausted/fatigued some (or all) days. Who are in pain. Who live in a world that doesn’t understand them, a world that isn’t built for them.

I hope you have the time to cuddle your favorite stuffed animal. I hope you watch an amazing episode of your favorite show. I hope you meet a doctor that smiles and sees you and works with you. Much love to you all.