Category Archives: Uncategorized

Surviving and thriving in college with a chronic illness

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This is a useful article for people who are thinking of going to uni. I never finished uni, I had to drop out after a few months because I was too ill (and the brain fog didn’t help!) but things are maybe a bit different now, more help available etc. And nowadays there is also so much you can do online as well.

Chronically courageous

Going to college is a big transition in anyone’s life. It’s a period of changing, gaining independence, and growing up. When you are living with a serious chronic illness, and you experience this transition, it can be more difficult to adjust to and cope with than the average person.

A little over a year ago, I was starting my freshman year of college, and this transition was one hell of a (miserable) trying time. My senior year of high school had pretty much been spent on home instruction, and I was so dependent on my parents for pretty much everything. Needless to say, the day I moved in, I was scared to death, and cried so much leaving my family that I think there are still eyeliner marks on my mom’s shirt.

My freshman year turned out to be one of the best years of my life, and despite the…

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The Ugly Truth of Bad Day with CFS… But its ok!

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This sounds all too familiar, hard days just suck, badly!

Gluten Free Adventures & M.E

Today has not been a good day in fact that is putting it quite mildly…But thats OK!

When I say I have had a bad day I don’t think people really get it, and before I was a sufferer of this ridiculous illness I wouldn’t have understood either.

Friends, family co workers and pretty much most people you come into contact with only see you at your best, where you grin and bare the pain or other symptoms.

I hate letting people know how bad it can get sometimes and the only one who really sees this is my partner, who really is my night in shining armour! This is for a variety of reasons from not wanting to seem weak, feeling embarrassed not wanting people to feel sorry for me or think of me as their sick friend.

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Useful Article About Joint Hypermobility/EDS

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Many people have flexible or loose joints. They’re the people, maybe like you, who did gymnastics or ballet when they were young and are “good” at yoga. Their joints move farther and more easily than most people’s joints, so they often can do tricks like bending their thumbs forward until they touch their fore-arms. Sometimes these people are called “double-jointed,” and some may even have dislocated or popped their joints out of the socket. The medical term for joints that move too far ishypermobility, and the word for joints that are tooloose and move too easily islaxity…read more

Taboos

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Today I bumped into this blog post, I think it is well written and worth checking out

“Taboos don’t help us. Taboos lead to silence and silence means we feel alone. Being frightened or too embarrassed, to express how we feel, or to share our experiences leads to an unnecessary burden. One which we could avoid or minimise through openness. Chronic illness is hard and not just in the physical sense. The emotional aspects of a life of chronic pain or chronic ill health are frequently underestimated. Medical practitioners rarely discuss this aspect with their patients. And patients are in turn often reluctant to discuss it with their doctors.”

Read more: Taboos

Special Treatment

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This is an interesting article, especially because I have been using a wheelchair since recently so I recognise some of the things. However, I don’t mind ‘special treatment’ itself, sometimes it’s needed in order not to get sicker (like the thing where the writer of the article is talking about the queue, I am not allowed to stand, so if I can avoid a queue that makes a massive difference for me)

I have a different problem, I have hidden my illness/disability for so long that now it has become obvious or when I need to talk about it I am extremely embarased. I can’t even tell why it embarrasses me, maybe it is because I was always told to not show and not tell (when I was a kid) And in times when I did, I had very negative reactions. That’s a long story, for another time, in the meantime, have a look at this article:

Read more: Special Treatment

The Cult of Positivity

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An article that describes it exactly how it is! I so agree, the ‘mind over matter’ and all the positivity memes are damaging:

“They all had one thing in common that I found frustrating. They all focused so hard on “mind over matter” and positive attitude, leaving no room whatsoever for true feelings. They all emphasized that “you have MS, it does NOT have you.”

Frankly, that statement is bullshit. It makes me want to take my cane and beat people with it.”

Read more
click here.

Chronic Illness, Portrayed by Hollywood…

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I came across this article and I couldn’t agree more, I once was that teenager with POTS. Only difference is that the writer of this article does have a diagnosis and isn’t waved off by doctors all the time like I was. Looks like things have improved a bit in the medical sector, but not in Hollywood:

Read:
Hollywood has it wrong: I’m a teenager with an illness, and it’s not glamorous at all.