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[melia162]

Going back to bad days after a good one is shit. That's all.

[melia162]

In gran canaria celebrating gay pride! Feel like I'm living a tiny burst of life through my ME. Although it's been full of missing out on things and sleeping/resting in my hotel, and being surrounded by people who not only don't understand, but seem to think my illness is some kind of joke, I feel incredibly blessed to be living a tiny segment of life despite being sick. Yesterday I went to a lesbian boat party, and instead of thinking "this is hard" I thought "of all the places to be sick this is pretty awesome!" Spent the whole time lying down with my hat over my head, but it beats being stuck in the same four walls. Proving that I can still live despite my ME. Silver linings are sometimes hard to find but I'm enjoying one now. #feelingblessed

[melia162]

I'm so sick of hearing the phrase "alright for some" in relation to my "getting to" not work and stay in bed all the time; I think this is one of the worst cases of ignorance we face as spoonies when we would trade our situation for a life full of Monday mornings and staring out of office windows from mundane jobs just to be healthy. It's like telling someone in a wheelchair "lucky you, I bet you love getting to sit down all the time... I could do with putting my feet up" Ignorance is bliss.

[melia162]

Chronic illness often feels like life has become you vs your body... and it's winning. Maybe learning to let your body take the lead is the key to recovery, even if this looks to outsiders like self indulgence or weakness. What do they know anyway, their bodies don't hate them!

[melia162]

I don't want to curse it... But I think after 2 and a half years I might actually be starting to get better...! Oh hi, health, nice of you to join me, do you have life with you as well? I've really missed you both. Still a long way to go but it's amazing to be feeling awake and almost pain free today :D Finally understanding the prodigal son analogy.

[melia162]

Chronic illness, like love, is one of those things that can never be explained or understood until you have it. After 2 years of being sick I've realised that life is so much easier if I just don't try; I think of it as my own little secret, and revel in the smugness that comes from knowing I am coping marvellously with something that the people around me can't even imagine. That phrase about walking a mile in someone else's shoes comes to mind, and now I never judge anyone if I think I perceive weakness or for any other reason. Most importantly, at least for my own happiness, I simply don't care when I can tell that someone's judging me, especially for things related to or caused by my illness, because (bless them) they just don't have the capacity to know any better. Chronic illness has opened my mind and made me a better, less judgemental, more tolerant person; and all for my own benefit :D Now there's a silver lining.

[melia162]

Really have had enough of people thinking I'm just lazy. Or not trying hard enough. We definitely need some awareness or public service announcement or SOMETHING. It's frustrating enough to have an incurable illness never mind one that's misunderstood and largely ignored. Having an invisible illness makes me feel invisible.

[melia162]

If I push through and try to remain strong people assume I'm ok. If I complain or try to explain my symptoms people think I'm weak and over exaggerating or seeking attention or sympathy. Even if my reaction to my symptoms isn't invisible, because my illness is I am always misinterpreted to my detriment, leading people to underestimate my illness. The result is being pushed further into isolation and accepting that this is a battle I fight alone.

[melia162]

Actually woke up with some spoons today :D *does little happy dance* Aw sh*t now they're gone... Must remember not to use up spoons celebrating having spoons!

[melia162]

One of the hardest parts of chronic illness is that when someone close to you needs help you have to make a choice between your own health and their needs. It takes away your ability to be depended on. You can help, but to the detriment of your own health with the constant fear that you're going to completely lose the ability to function at all at any given moment and be completely useless to both yourself and to them. There's no back up emergency reserve to tap into and you let people down when they desperately need help, and you desperately want to help them. All you can do is try and fight and remember that unless you put your own health first sometimes you may become completely useless to the people you want to help. Why won't my body understand this is an emergency?! There should be crisis spoons for times like this! Chronic illness is relentlessly cruel and it doesn't understand when life is more important than it is.

[melia162]

I think one of the main problems with trying to explain chronic illness is the language we use. When we say "tired" a healthy person can only relate it to how they've felt. When I say my muscles hurt they imagine how theirs have. Every time I describe my illness I hear myself describing something that sounds like the same thing healthy people face, and that's because the only tools I have to describe it are the same as I had before. We need a chronic illness language. My first word swap will be "tired" for "empty." You are tired and have no energy; I am empty. You will never really know what I mean when I say "no energy." They mean different things to us now. I would kill for your version of "out of energy."

[snowcherub-deactivated20130819]

What is Myalgic Encephalomyelitis?.

[fibrofrog]

THIS. Thank you to the person that made this amazing video.

[melia162]

Hang on… Love this but disagree with the contagious part! Wouldn’t want people avoiding me like the plague (literally) when this has not been proven… I’m pretty sure this is not contagious?

[fibrofrog]

At Stanford they have a clinic that researches CFS and infectious agents involved in it, and from what I have read on their website and also read on my own, it’s only contagious within the first 2-4 weeks, particularly to people with more vulnerable immune systems like children, the elderly, and the chronically ill, and also can not be sexually transmitted. There are a lot of different sub groups to CFS though, so not everyone that has it necessarily has an infection that’s causing it, and those that do could have one of many different possible infections. This video mentioned that enteroviruses are the cause, but it can also be caused be HHV6 reactivation, ciHHV6, EBV, or chlamydia pneumoniae (but not necessarily for everyone). The outbreaks that this video mentions are totally legit though, and there’s actually a really interesting documentary on youtube that focuses a lot on the various CFS outbreaks that you can check out or you could just google it if your interested in reading more. So yeah, this video is not 100% accurate, and I agree I don’t want people to think that everyone with CFS is contagious. I just found it to be mostly informative and funny with the Jesus and Oprah characters :)

[melia162]

Thanks so much for the response; that's really useful and incredibly interesting. When I've researched CFS and ME I've read about these outbreaks but was under the impression they were because of other factors and I'd put it down to a misproven theory (of which there are too many to count!) I'm really glad you've enlightened me :) and glad it's only in the first few weeks; won't quarantine myself just yet!

[melia162]

Does anyone else hate the name "chronic fatigue syndrome"? I'm sorry if this comes across offensive, It's not meant in that way at all, but it would be like calling Parkinson's "chronic shaking syndrome" or Alzheimer's "chronic forgetting syndrome." It takes a symptom of a wider illness and belittles it by making it seem like its just defined by something it causes. I wish they would name it something that doesn't imply it's just matter of being tired.

[melia162]

Been stuck in bed for a week straight but I have actual normal person plans tonight. I AM going to make it. I'm getting in the shower any second. Aaaaany second now. Damn, I thought writing it here would convince me I actually meant that.

[melia162]

Apparently twins are shorter than they would have been if the egg hadn't split... Can I trade mine in for an extra couple of inches? I mean, I love mine, but I'd really like to see better in crowds.

[melia162]

You know you're chronically ill when you think of getting up and opening your curtains as an achievement.

[melia162]

I haven't opened my shutters in a week. And what.