The Prince Of Ouch

“Can I get you a chair?”

It seems simple but you have no idea how often people will just suffer through our pain rather than be any trouble. If someone is struggling, please, please offer a chair. It’s a huge relief and a weight off us (literally).

quotes that hit me right in the ex-christian

I live in NJ and have been hired to work as a full time teacher at a high school. I worked as a substitute teacher in that school distract and did my student-teaching at that school. I was so excited because, as an ambulatory wheelchair user, I was afraid I wouldn’t be hired. People with disabilities are discriminated against a lot.

And then I went for the obligatory health screening for new hires at the school. The doctor saw that in the drug testing documents, I had put down that I took a particular medication for fibromyalgia, a chronic pain disorder. The doctor said that he was concerned that I wouldn’t have the energy required to teach effectively and wants a letter from a doctor saying if there are any accommodations I would require in order to work there and stating that I am fit to do the job. The thing is, I didn’t request any accommodations. The school is wheelchair accessible, and regardless I am capable of walking. I went to the heath screening with my rollator walker instead of my wheelchair to show that I can walk, so the school doesn’t have to do anything special for me for, say, fire drills or whatever.

If you’re chronically ill, I genuinely want to hear what fatigue looks like for you!!

It’s so easily overlooked and so commonly the most debilitating symptom.

I have ME (myalgic encephalomyelitis) also known as chronic fatigue syndrome. People seem to think that it's just that I'm a bit tired and i often get comments like "I'm tired too" or "i think I've got a bit of that".

I am NOT "just tired"

Most people fail to understand the differences between fatigue, chronic fatigue and chronic fatigue syndrome (ME), so I'll explain:

Fatigue is extreme tiredness caused by mental or physical exertion or illness.

Chronic fatigue is extreme fatigue that doesn't go away with rest and last for a long period of time usually due to a chronic illness. While not an illness in itself it is a symptom of many chronic illnesses.

Chronic fatigue syndrome (ME) is a chronic multisystemic neroimmune disease (meaning it affects a lot of stuff and lasts a long time). While chronic fatigue is the most well known symptom it is not the only one. ME/CFS can cause a wide variety of problems including but not limited to, sleeping issues, cognitive functions, muscle and joint pains, headaches and migraines, soar throat and glands, flu-like symptoms, dizziness and feeling sick, breathlessness, hypersensitivity and heart issues such as palpitations. ME/CFS can last anything between months, years, decades or even life. No matter how much you rest it doesn't go away. There is no cure and no effective treatment. It is NOT just tiredness!

I AM NOT JUST TIRED!

I have soul crushing chronic fatigue that you probably can't even imagine and it plagues every moment of my existence. I am in constant pain. My clothes hurt my skin, the light hurts to look at, the sounds make my migraines worse. It hurts to move, if i so much as breathe it feels like I'm being stabbed a thousand times. My brain no longer works correctly, i have brain fog all the time. I can't sleep no matter how badly i need it and when i do it's filled with nightmares and i wake up at 3 in the morning crying from the pain. Even if i had the best sleep of all time i would still wake up the same, more sick than i previously thought possible.

So I'll say it again,

going slack and moving as little as possible, including the muscles of the face, is in fact a sensible reaction to intense pain: it conserves energy. someone who looks outwardly relaxed or bored may be screaming on the inside.

if this is you, i just want you to know you deserve to be taken at your word when you say you’re in pain. you shouldn’t have to put on a fake grimace in order to give a convincing performance of what you’re actually going through.

I went shopping with my husband at a few places today, and I figured out that I was more comfortable pushing the shopping cart than walking around with my cane. I had surgery back in May, and it took me longer to heal than expected because I have muscular dystrophy. I have also been having alot of anxiety about things opening up post COVID because of how people with chronic illnesses and disabilities were treated like we were expendable.

Upon the office for national statistics realising some statistics for disabled people that outline many areas of life (education, housing, well-being, employment, ect) it becomes clear very quickly where disabled people are more disadvantaged compared to ableds (These are the statistics for 2020, full list found here)

Around half of disabled people aged 16 to 64 years (52.1%) in the UK were in employment compared with around 8 in 10 (81.3%) for non-disabled people (July to September 2020); disabled people with autism were among those disabled people with the lowest employment rate.

Disabled people’s (aged 16 to 64 years) average well-being ratings in the UK were poorer than those for non-disabled people for happiness, worthwhile and life satisfaction measures; average anxiety levels were higher for disabled people at 4.47 out of 10, compared with 2.91 out of 10 for non-disabled people

The proportion of disabled people (13.9%) aged 16 years and over in England, who reported feeling lonely “often or always” was almost four times that of non-disabled people (3.8%)

Around 1 in 7 (14.3%) disabled people aged 16 to 59 years in England and Wales experienced domestic abuse in the last 12 months, compared with about 1 in 20 (5.1%) non-disabled people; disabled women (17.5%) were more than twice as likely to experience domestic abuse in the last year than non-disabled women (6.7%)

In terms of signing petitions in the UK,it can be more complicated that just going onto change.org. For the government to officially recognise a petition in parliament it has to be made on the government website and only after 10,000 signatures will the government respond. (Though to be considered for debate in parliament it must receive 100,000) Here are some petitions yet to meet their goals;

Allow disabled people to keep all benefits if they move in with a partner — Disabled people on income-related benefits risk being left totally dependent on their partner if they move in together. This is because, when joint income is taken into account, their partner's earnings or savings often exceed the limits for eligibility for income-related benefits. This rule applies even if the disabled person in the relationship cannot and won't ever me able to work, meaning that they have no choice other than to hope the income their partner gets is enough for them both to live on.

Make CCTV on school buses carrying disabled children mandatory — There have been reported incidents on school buses transporting children with disabilities. Children have come home with unexplained marks on their body. Without CCTV this becomes an adults' word against a child who may struggle with communication. Parents put their children in the care of school bus companies and their escorts and we expect them to be looked after. Making it a legal requirement to have CCTV will ensure the adults in charge are carrying out their duties correctly which would leave no room for misunderstandings. Should an incident occur the use of CCTV will enable investigations to be carried out fairly and efficiently

More funding for SEN children to access appropriate school provisions — Changes need to be made so more funding is available for schools and local authorities to offer better provisions for SEN children, especially those who do not fit the criteria for special needs EMS/mainstream schools. So no other child falls through the system.

Make working from home a legal right for disabled workers — The Government should give disabled employees the legal right to work from home for office-based job roles and/or where no genuine occupational requirement (GOR) is in place to require an employee to be on site. Reducing barriers to work for disabled people should improve their personal wellbeing and could boost GDP. A 2017 Government white paper stated that finding work for an additional 1% of disabled workers would save the Exchequer £240 million, and provide a boost to the economy of £260 million. By making it a legal right for non-GOR roles to work from home it is hoped that economic inactivity for 3.6 million disabled people can be reduced, in the spirit of the Equality Act.

Fibromyalgia syndrome (FMS) is one of the most common chronic pain conditions out there, yet we still know shockingly little about it.

For decades, the debilitating condition - marked by widespread pain and fatigue - has been vastly understudied, and while it’s commonly thought to originate in the brain, no one really knows how fibromyalgia starts or what can be done to treat it. Some physicians maintain it doesn’t even exist, and many patients report feeling gaslit by the medical community.

New research on mice has now found further evidence that fibromyalgia is not only real, but may involve an autoimmune response as a driver for the illness.

Me: My pills make me not want to die tho

They: You shouldn’t want to die, that’s not normal