dr_ghost: M.E Awareness Week

Ghost (

dr_ghost) wrote,
@ 2008-05-13 08:20:00

Current mood:	grateful
Entry tags:	cfs, m.e awareness, tl;dr

M.E Awareness Week
I know drazzi has made an effort to bring this up in past awareness weeks, I want to ramble a bit myself.

May 11th 2008 marks the start of M.E/CFS awareness week.

So naturally, I bring this up on the 13th. Smooth, Ghostie, very smooth indeed.

Still, better late than never as many wise have said, and some not-so-wise who were genuinely late and just wanted to sound cool about it. And ironically, this awareness week comes as I feel the ever frustrating hand of fatigue from exactly that illness creep over me again after several weeks of general 'okay'-ness. Can't be helped and that's just the way it transpires.

I must assume then that I should be making a point about what M.E is as a first point regarding M.E awareness, but as a sufferer at the moment all I can think about is the people who have helped me with this thing. Not helped cure, no, but helped cope, because hell if you can't be cured instantly the next best thing people can do is help you cope.

I have, and I will openly admit this, been insanely lucky with the help and support I've been given. My friends both online and off are all amazing, patient and accommodating. My ever adoring roomies have put up with me going through stages of almost total antisocial behaviour while lovingly making me countless cups of tea and providing a loving and non-judgemental environment. My family also have been nothing short of saints for learning about this illness and coping with me having it so well.

Honestly, I am very lucky indeed and I know not everyone gets that level of love and support.

I guess as a first point about this I just want to say thank you to all those who have helped me hop along this far, put up with my strange sleep patterns, driven me places, kept me company, helped me stand up, didn't get angry when I said I needed to go home and lay down while outside, put up with my fuzzy logic and brain-fog, endured my panic attacks about getting finical aid, and as I have said have just generally been there for me thus far.

To all of you, and there are a lot so I won't name names, thank you. I can never say it enough but I mean it from the bottom of my heart.

That sappy stuff aside for today, I'll no doubt ramble more later. If that wasn't tl;dr for you enough then have a link. It outlines some important facts about M.E/CFS for those who don't know or are curious to know.

As a fair warning, I may well be rambling about this a lot throughout the course of the week. Don't say I didn't warn you. But hey, if you sat through this then that's good and happy making.

And no, I promise this won't be leading to a big "If you can spare just [x] amount of money a week you can help us beat M.E/CFS" campaign from me, I promise. Though if you feel so inclined to actually donate to helping people with M.E I won't stop you and will point you here rather swiftly with a big grin.

Thanks for reading if you got this far :) ♥

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	nomiwolf 2008-05-13 08:27 am UTC (link)
	♥ I hope you find your way out of your fog soon :) (Reply to this)(Thread)

	dr_ghost 2008-05-13 10:24 am UTC (link)
	Thank you kindly, hun. Compared to this time last year I'm doing wonderfully. Onward and upward, as they say ♥ (Reply to this)(Parent)(Thread)

	nomiwolf 2008-05-13 10:26 am UTC (link)
	I'm glad to hear that :D (Reply to this)(Parent)

	squidgeesushi 2008-05-13 09:57 am UTC (link)
	People need to be more aware of this. I just finished reading a fantastic book which follow's a well-known Australian journalist through his 5year struggle with CFS. If you have the time, its well worth the read. I hope your health takes a permanent turn for the better soon. (Reply to this)(Thread)

dr_ghost
2008-05-13 10:27 am UTC (link)

They really do. It's hard enough for people around me to really understand it let along people who have never heard of it and since it has been such a heavy hit to my life in the last couple of years I hope I can bring more attention to it.

That book looks really interesting. I'd honestly love to see if I can get a hold of it and leaf through sometime. Thanks for pointing that out to me ♥

Thank you for the well wishes, they're much appreciated and I seriously hope so too :)

(Reply to this)(Parent)(Thread)

squidgeesushi
2008-05-14 06:36 am UTC (link)

There are so many conditions out there that I wish people knew more about and understood better. I think the one of the worst things about CFS is other peoples' tendancy to say "oh, I see, you're tired" and make it sound as though its your choice and that you somehow have some control over it >:( As a nurse I see so many different conditions from day to day and one of the saddest things (other than the fact that people have the conditions) is the way the people around them get the wrong idea about it. A little understanding goes a long way.

It was a great read and extremely fascinating, especially from the point of view of having had a several month bout of post-viral-fatigue, which although nothing compared to CFS, I think helped me to understand CFS a little better.
Amongst other things, the author makes an interesting link between his diet and his energy levels, something which I have found extremely fascinating because during my period of fatigue I found myself out-eating my 6 foot tall 23 y/o brother, yet still having no energy and even losing weight.
If you have trouble getting hold of a copy, I'd be happy to purchase one over here and ship it to you.... its probably one of the few things in the world that is easier to get in Australia :P It's definitely worth the read

I'll put you in my prayers :3

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	creatore_magico 2008-05-13 10:28 am UTC (link)
	♥ A thank you always makes everything worthwhile. You are doing so well my love, and whether you are up or down, we will always be here. Love you. (Reply to this)(Thread)

	dr_ghost 2008-05-13 10:32 am UTC (link)
	I seriously don't want to even imagine how tough this all would be without you, babe. Despite what you say, "thank you" will never be enough as far as I'm concerned, but it's all I can offer right now. ♥ (Reply to this)(Parent)

innate
2008-05-13 10:41 am UTC (link)

I used to wonder if I had that condition, since I do suffer from some of the conditions, including serious fatigue. But in my case I guess it's depression, but either one is no good.

Even if our problems are different, they are similar in that they try to disrupt our lives on a regular basis. The key is to not let it control us, and that's a whole new challenge, since for every person the symptoms and the treatments are different.

But even if I get impatient with you at times, I do want you to know I do support you, and sometimes when I've had a bad day I tend to get snippy with people, so it's not your fault. You're very lucky indeed to have understanding roommates and parents. Just remember to cherish the support system you have, and you can stay strong. ♥

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dr_ghost
2008-05-13 10:49 am UTC (link)

Depression is never something to scoff at and it can be very damaging. I've been very lucky in the sense I haven't experienced too much in the way of depression as a knock-on effect of having M.E, but I live with someone who does suffer from it quite heavily so I know just how much that can interfere with daily life too. You really do have my sympathy in that sense, it's not fun at all.

Trust me, your snippiness or impatience has never really struck me in a way that's left a lingering feeling of annoyance. You should know I can stand my ground pretty well when I need to and as far as thi particular issue is concerned there isn't much I can do except shrug and apologise, but it's generally out of my hand.

Regardless, I know it's frustrating and really I am grateful that you do show a huge amount of patience when dealing with me ;;; I know it's not easy at all ^^;; So again, thank you ♥

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innate
2008-05-13 10:52 am UTC (link)

Well people in turn have to be patient with me, so I know how it is to be the one worried about annoying people. Granted, I'm not as eager to please as many people, but I have had plenty of times where I've disappointed friends or family because of just being in favor of sleeping rather than going out and having a good time. It's the reason I haven't been able to hold a job in over a year.

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dr_ghost
2008-05-13 10:57 am UTC (link)

I'm with you on that one. I want to do so much and be around for so many people at once at all times of the day, but sometimes a short nap turns into hours and hours, a quick trip to the store can wipe me out for the rest of the day or a planned early morning just doesn't happen because I'm too tired.

And it's totally random, the biggest reason I've not been able to get back to the part-time job I love, university or life in general. It's made of utter fail, but I'm pretty up-beat. I'm sure somehow it'll be manageable one day.

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innate
2008-05-13 10:59 am UTC (link)

That's pretty much how I am, too. I do wonder if it's possible I suffer from both, but I'm no psychologist so I dunno.

Well the job I have now is really worth fighting for. I can't stay in this trend, living with my mom and not having enough money to pay for a stick of gum, drowning in debt, always fighting with her. I just can't take it anymore. And the job I have now is a good one, so I'm gonna do my damnedest not to fall on my face again.

I know you'll get there, too.

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dr_ghost
2008-05-13 11:11 am UTC (link)

It's not impossible. As I implied, it's quite common for M.E sufferers to develop depression as a result of the illness because it can stop their lives mid-flow for a undetermined amount of time.

You're clearly passionate about this job, so I have no doubt that you'll be giving it your all. Getting into the swing of working life after a pause is tough, but with the kind of motivation you've got I'm sure you'll make it worth-while. And you know, if the unthinkable happens and you do fall you can always get back up again. There's no limit to how many times you can try again :)

(Reply to this)(Parent)(Thread)

	innate 2008-05-13 11:12 am UTC (link)
	So they say. I'm on AIM if you ever wanna talk. (Reply to this)(Parent)(Thread)

	dr_ghost 2008-05-13 11:14 am UTC (link)
	They do indeed. I like to believe they're right. After a quick shower I think I'll hop on~ We have log things to finish, no? ;D (Reply to this)(Parent)(Thread)

	innate 2008-05-13 11:20 am UTC (link)
	Pfffft. Us? Backlog? You make me LOL. (Reply to this)(Parent)(Thread)

	dr_ghost 2008-05-13 11:58 am UTC (link)
	You stubborn git! Don't make me dangle Scientist slash in front of you like a carrot on a string, because so help me I will XT (Reply to this)(Parent)(Thread)

	innate 2008-05-13 12:26 pm UTC (link)
	Y-you're evil... (Reply to this)(Parent)

	drazzi 2008-05-13 10:54 am UTC (link)
	I would have been a bit of a cow not to put up with your CFS after going through it myself, wouldn't I? ♥ (Reply to this)(Thread)

dr_ghost
2008-05-13 10:59 am UTC (link)

Pfft, not really. I honestly wouldn't have blamed you in the slightest if you'd never wanted to hear the bloody term ever again.

But the fact you're always so willing to support and share with me is just so utterly priceless and I can't begin to explain how much reassurance you've given me during all this. I wish I could have been able to do the same for you.

Your face, I love it ♥

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	drazzi 2008-05-13 11:03 am UTC (link)
	Trust me, when I was going through it - and while I'm going though whatever life throws at me now - you gave me enough of what I needed. I still hold by the fact that it was harder for me seeing someone I love go through it, than going through it myself. I love your face, so I'll try and continue to be there if you need me, even several miles away ♥ (Reply to this)(Parent)(Thread)

	dr_ghost 2008-05-13 11:12 am UTC (link)
	If that's the case then whenever possible I hope I can continue to give that to you, if nothing else. But there were much hugs time and bitching sessions as a result, no? :D No. I love your face! D: (Reply to this)(Parent)

shahni
2008-05-13 04:14 pm UTC (link)

I've been hearing about things on and off but regardless, whatever has to happen, if people need the aid and I can give the aid, I'll do what I can. I have you and two other friends I know going through the same thing and it's just kind of scary.

But you'll pull through, I know it. A lot of healing starts from inside and so long as you can keep going, it's a good sign. Mental health counts for the most in this, and even if you can't get rid of it, you sure can beat it. >3

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