"Chronic pain is one of the most underestimated healthcare problems in the world today. We believe chronic pain is a disease in it’s own right."-Professor Harald Breivik - WHO (via thefaultinourspoons)
Holy god! Do you know how much easier an IV start would be?! This is VeinViewer and it projects an image of the veins that are underneath the skin. Genius idea!
this would make a lot of spoonies lives easier too I’m sure!
"Being young and sick is sorta like being elderly, except we lack the reflection on all the great times and great things we did long ago. Instead, we watch our peers make the memories and strides they’ll look back on fondly, bitterly observing and praying for our chance. Our time."-Unknown (via asecondchancetoliveonce)
So this is from an article in a British newspaper called the sun, which I’m 99.9% sure people don’t even buy because it’s awful, as example above.
If it’s a bit difficult to read here are some quotes:
“My New Year’s resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades – fibromyalgia, or M.E.”
“And being disabled is incredibly fashionable. The number of people who claim to be disabled has doubled in the past ten years.”
“I think we should all pretend to be disabled for a month or so, claim benefits and hope this persuades the authorities to sort out the mess.”
“It has become easier to claim those benefits, partly as a consequence of the disablement charities who, out of their own self-interest, insist that an ever-greater proportion of the population is disabled.”
I remember when this article was first published. It caused so much distress to fibromyalgia and chronic pain sufferers. They never did get the apology they deserved.
I hope this asswipe gets M.E. and fibro themselves and has someone spit in THEIR face. Also, The Sun is not a newspaper, it is toilet paper with words and pictures on.“I think we should all pretend to be disabled for a month or so, claim benefits…”
ha ha ha ha ha ha!!! You have no idea… No idea. People with disabilities have a hard time getting benefits.
So apparently I’m wildly uneducated about methotrexate. I can’t go back on it because it’s chemo. My rheumy says that he doesn’t think that the fatigue is from the lupus since my labs were completely normal a month ago. My father picked me up from school yesterday and drove me all the way back home to get some more labs done. They suspect it might be a virus of some sort, but the only symptom I’m displaying right now is fatigue. By the way, they took a shit ton of blood since they’re testing for everything and my arm still hurts a little bit where they poked me. This happens to be a first. I won’t get results until early next week, but hopefully they are good.
It’s back. I was doing so well that my rheumatologist took me off the methotrexate. It’s only been a month since I’ve been off of it, but now the fatigue has been hitting me hard. I haven’t really had any significant problems with the lupus lately, but today has been especially bad. I’ve been sleeping whenever I’m not in class. My mother is going to call the doctor tomorrow morning, but I think he’s going to put me back on the methotrexate. I really didn’t want to go back on it. It just feels like no one understands how hard it is for me return to it.
Fatigue vs. Being Tired: What’s the Difference? – by Ashley Boynes-Shuck | Wellness With a Side of Life, Please
I think this article is helpful! I used some of this same language in the piece I wrote on my blog to try to help my loved ones understand what I’m going through. Good luck communicating about your fatigue, and recruiting spoonie allies!
So informative and so relatable!
I think this article gives good adjectives to describe fatigue. Personally I really relate to this one:
- Wholistic exhaustion (feeling fatigued on the whole: mind, body, spirit.)
Typography project version 1
-Dedicated to my amazing spoonie community without whom I would be so incredibly lost.
i hate when you’re outside and the sun
On this very day, two years ago, I was officially diagnosed with SLE. I like to remember this day because I don’t really see the point in living a sad life. If Lupus and I are gonna be stuck together forever, I might as well celebrate it rather than mope around complaining about the injustice of it all.
Today, after I’m done with my last class, I’m going to make purple cupcakes. After all, what’s a celebration without dessert? Have an awesome day, guys. I know I will.
I don’t think I’ll ever come to terms with the fact that while I have the same number of hours in the day as a healthy person, I cannot accomplish half of what they can in a day. And I mean, that’s okay, but I think I’m still allowed to be frustrated about it.