ILTBY

Hi guys,

I don't think I'll be uploading my photos to dA anymore but please feel free to follow me on Redbubble as I'm quite active there-www.redbubble.com/people/iltby

I still check back regularly, I just find it a bit hard to keep up with!

I hope you guys are all well, thanks so much for all the lovely birthday messages the other day

Josie.

P.S: Queensland is currently being battered by Cyclone Yasi...please keep affected people in your thoughts.



Clubs I support-



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My Redbubble- www.redbubble.com/people/iltby

My Flickr- www.flickr.com/photos/ilovetob…

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Thanks to ClaireJones for the CSS!

Hey guys...I wrote this a while ago after staying up all night in pain. It would mean a lot to me if even just a few of you read it.

Thanks a lot xoxo

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My experience with Myalgic Encephalomyelitis (ME) has been very surreal. You go through so many emotions dealing with an illness like this, it's almost too much for one person to handle. Unfortunately the thing about ME is that you have to handle it whether you like it or not.

The range of feelings I've experienced throughout this ordeal have been from scared to confused to sad to angry to worried to grateful to comfortable. Grateful and comfortable may seem really out of place there but I have good reason for including them.

Firstly, grateful for everything this illness has allowed me to achieve or allowed me to experience. Having fallen ill at a very young age, it essentially forced me to mature faster than I probably otherwise would have, which has been very eye opening and even kind of enjoyable. Being able to sit back and view the world with no distractions such as school, peers, parties, work, etc, etc, is a godsend in some ways. I can honestly say that it has given me the opportunity to grow as a person, to figure out who I am, to study the people around me and to generally sit back and view the world from a very…neutral position. That's not to say that I don't have anger towards the illness and that I don't lash out at it and the people around me from time to time. But if you live with something like this for 6+ years, you have to be able to appreciate both its positives and negatives or there's no way you will manage it.

Moving onto comfortable. I'm sad to say, I am comfortable with the illness at this point. It's not something I'm proud of and not something I thought I ever would have described the illness as, but after having lived with it for 6 years, it has become 'the norm' for me. I know it won't always be but for now it's something I have to accept and have to live with.

I will admit, the thought of getting better does scare me a lot - because of how comfortable my situation has become. Getting better, or even improving slightly, would completely open up my world - it would allow me to do things I've only dreamed of doing for the past few years - to travel, to study, to socialise without worrying about the ramifications - to, quite frankly, get to be 'young'. But I also have to face the fact that this illness has been a huge part of my life for a while now and that living without it is going to be scary, and probably very challenging.

Living with ME, aside from being surreal, is overwhelming. I fell sick at the age of 13 and since then have probably seen at least 50 doctors, tried at least 200 treatments, been diagnosed with 20 different things…and I still don't really have any answers.

This is another very frustrating part of the illness - the lack of satisfaction. Because this illness is still so unknown about and so unrecognised, being a sufferer of it leaves you with very little choice in terms of doctors and treatments. I have been to a number of doctors who have refused to acknowledge the illness, and tried countless amount of drugs that have pretty much done shit all.

Putting aside the symptoms, living with ME is hard simply because people have no idea what it is. The public doesn't know what it is - even most doctors don't know what it is - even most specialists can't define it, can't even decide what to name it, let alone figure out how to treat it. This puts you in a very irritating situation, because as someone so bluntly put it to me a while ago, we are their guinea pigs.

Living with a chronic illness like this is very much a learning curve. You have to learn to manage, to persevere, to think positive and to be willing to give everything a go. I have discovered over the past few years, these aren't easy tasks.

Learning to manage the illness is probably the most difficult thing I've had to do - and truly, I don't manage it at all sometimes. The illness isn't a part of who you are, and it never will be, but unfortunately it is with you and whether you can coexist with it or not is up to you. Learning to manage it doesn't mean giving up and it doesn't mean admitting 'failure', it simply means learning to live your life in a way that doesn't facilitate the illness, but also doesn't inflame it. Learning to pace yourself is one of the most important things you will ever do with an illness like this because if you take advantage of those occasional good days or weeks and push yourself to the limit, you are guaranteed to come crashing down afterwards, as I have experienced many a time.

Persevering is probably equally as hard as learning to manage. After those first 5 unhelpful doctors, those first 20 drugs that had no effect, you begin to lose faith - and who can blame you? When you're sick, getting up to see a doctor isn't necessarily an easy task…forcing yourself taking 5-10 tablets a day when you have nausea or stomach cramps or whatever else is painful, to say the least. When you get to the point where it feels like you've literally tried over 200 suggestions, you really do just want to tell everyone to sod off and you can easily lose all hope.

Unfortunately, that's one of the worst things you can do. Being sick is something that's out of your control, period. I have been told otherwise by various doctors and I will say right now that it's absolute bullshit. Being sick with ME is never, ever your fault. However, being proactive in treating it is a choice…and when you choose not to be, you've pretty much let the illness win. It's completely reasonable to want a break from doctors and medicines and tests from time to time, as long as you are able to pick yourself back up and get ready to try something else.

Lastly, 'positive thinking'. I'm willing to bet every single person who has ever had Myalgic Encephalomyelitis or Chronic Fatigue Syndrome or Fibromyalgia or Post Viral Syndrome or whatever else has heard this phrase. 'You can get through this with positive thinking'. 'Positive thinking is the key to getting better'. I'll say straight away, I don't disagree with positive thinking in the slightest. If you doubt every single thing you try, if you constantly tell yourself you are always going to be sick, if you shun every suggestion that's made to you, then why the hell are you even bothering?

My problem is not with 'positive thinking', it's with the attitudes that often come with it. It's being told you are not helping yourself to get better. It's being told that you're focusing too much on your symptoms and that you just need to push harder. It's being told that it all comes down to mentality. When you say this to someone with a serious illness, it's never going to be well received. We are well aware that we need to remain hopeful and that we need to be able to take on board any suggestions people might have, but no one has the right to tell us we're 'not trying hard enough'. Unless you have been in this situation, you have no idea what it's like to experience. Absolutely none.

The range of emotions you go through dealing with something like this is completely indescribable. I can't even begin to tell you the amount of times I've wondered if being sick is my fault, if I've somehow brought this upon myself, if I'm just not trying hard enough to get better, if there is something else I could be doing. Believe me, this is something that runs through my head all the time. It doesn't need to be reinforced by anyone else. If you truly want to offer support, my advice is: don't make any suggestions - don't try to cure me.

Everyone wants to offer their own help and that's completely understandable - being a carer or a friend or a relative of someone with a chronic illness means being in a very helpless position. But trust me when I say, we know what treatments are out there and we know about that wonderful new age medicine you just heard about, and we have most likely already tried it, or have it on our never-ending list of treatments to try. The absolute best thing you can do for someone with a chronic illness is to just be there. To offer some understanding, or a shoulder, or some encouraging words. So many people say to me, 'I wish I could help', and my response is always, 'you do help just by being here'. It's completely true. I would be totally and utterly lost without the support of the people around me. And despite that in the end it will probably be some treatment or other that gets me better, I never even would have made it this far if it weren't for my friends and my parents.



Clubs I support-



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My Redbubble- www.redbubble.com/people/iltby

My Flickr- www.flickr.com/photos/ilovetob…

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Thanks to ClaireJones for the CSS!

Hey guys,

Just thought you might like to see my latest tattoo-



It's not done yet, I go in on the 18th of May for the last session Love it so far, though.

The reference is from the lovely snowunmasked -



Also as a side note, my new car was t-boned the other day. As you can imagine, I'm thrilled about it.



Clubs I support-



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My Redbubble- www.redbubble.com/people/iltby

My Flickr- www.flickr.com/photos/ilovetob…

--

Thanks to ClaireJones for the CSS!

Hey guys!

I now have a super llama and a tinfoil hat...I think I'm sufficiently protected from any dangers that may befall me.

Ahem.

Anyway, how are you all? I know I've been staying under the radar lately - I apologise for that! My message centre has been nuts, and my deviations were at 10,000 at one point But I'm getting on top of it now and really want to get back in touch with you all!

Not much is new in the life of me. I turned 19 in Jan...got my Ps (provisional licence), too, so that was very exciting Also got a spunky new car-



All my dogs are the same as ever...mischievous and hairy.

And I think that's about it...my life is rather boring I'll be heading to a dog show on the 9th, so hope to get some good photos then. Also getting my third tattoo on the 12th which I'm very excited about. And heading down to Sydney on the 21st to do my second industrial metal gig. You can see the results of the first one here -

www.flickr.com/search/?q=gig&w…

I didn't do too well but it was a really fun experience. The final band was my friends', the Pink Industrial Whores, who I personally think are awesome. You can listen to some of their stuff here if you like metal- www.myspace.com/pinkindustrial…

Anyway, that's about it for me. As usual ending with a feature Would love to hear from you all!

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Clubs I support-



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My Redbubble- www.redbubble.com/people/iltby

My Flickr- www.flickr.com/photos/ilovetob…

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Thanks to ClaireJones for the CSS!