ME and Me

So here’s the thing: I disappeared for a long time. I never meant it to happen. I just kind of stopped writing one day. I honestly don’t know what made me stop but, after thinking about it, I know why I stopped. The what and the why are two very different things, believe it or not. The what is the part of me that made me stop—I can’t decide if it was my head or my heart. Maybe it was both. The why, on the other hand, is obvious, and exceedingly frustrating: I have Myalgic Encephomyelitis (ME).

 The less fancy (and less scary) name for ME is probably one you’ll have heard of—Chronic Fatigue Syndrome (CFS). The names are pretty much interchangeable, but they both boil down to the same thing, which is essentially a condition affecting the immune and central nervous systems. There’s no definitive cause, no specific diagnosis method or treatment, and no way of knowing when/if it is curable. This is all super awesome if, like me, you’re a hyper-control freak who craves neat endings and obvious solutions.

The other brilliant thing, and the reason it can be so hard to diagnose, is that there are fifty recognised symptoms of CFS, all of which may appear with a number of other illnesses, and none of which appear in unique pattern amongst CFS sufferers. Way to be vague and unhelpful, body!  Added to this is the fact that symptoms can show up all at once or appear slowly over time, they can range from slightly irritating to completely incapacitating, and the degree to which each affects you can be dependant simply on the weather, the time of day, or even the previous day’s activities.

I don’t want to go on too much about CFS, a lot of it is just lists of symptoms and depressing statistics on the likelihood of having other irritating side-conditions (like Fibromyalgia, Irritable Bowel Syndrome, and Depression). The reason I’m sharing this, is because I’ve discovered CFS is the reason I disappeared.

I’ve been really not well for over four years now. I’ve spent thousands of dollars on doctors, specialists, medications, and scans. I’ve wasted hours in waiting rooms, and driving to appointments. And I’ve spent so many nights crying myself to sleep because it all just felt so hopeless. Then, last year, I thought I’d found the answer. I had gall stones, so I had my gall bladder removed. I figured that was that, and I’d start to feel better. In fact, I remember being so relieved I laughed when the doctor told me, because finally I had some semblance of an answer.

But I didn’t get better. I was still tired and sore all the time. I woke up feeling like I’d run a marathon, and my heart would race simply bending down to lace my shoes. So I kept going back to the doctor, I kept looking for an answer. Then, last month, suddenly I had one. And not just any one, but one that made sense.

I’ve spent these past few years telling myself, and friends and family, that all I wanted was an answer that fit, something that made sense. I’ve said over and over that once I had an answer I’d be ok, because I could start fixing things. And I’m still saying that…But I’m not buying it. Because with CFS all you get is an answer.

I wanted an answer so I could get better, so I could start fixing the problem. I wanted to do what I do with a skirt hem that’s loose, or a dodgy shelf—find the problem, create the solution. But here’s the thing: with CFS there isn’t a solution. There are things I can do to make it easier, methods of treating various symptoms so that they’re not as severe. There are things called ‘pacing plans’ and advice on vitamins and exercise. But essentially, there’s no guaranteed way to ensure I get back to one hundred percent, there’s simply possibility. And this scares me, probably more than not having an answer.

I’ve spent the last month going out with friends and smiling, and saying I’m doing ok, that things will get better now. I’ve been looking for work, and talking about future plans. And then I’ve gone to bed and lay there terrified that I’m not actually capable of holding down a full time job, and that my future plans involve living with my parents and working at the corner store. And I’ve ignored Heidielka because it was one less place I had to pretend to be ok.

But I’m sick of pretending. And, more than anything, I miss writing. There’ll be posts from time to time about CFS, and I’ve found some really interesting things on biogenetics and viruses that I’ll probably drone on about at some point. But for the most part Heidielka will still be crammed with fashion loves, cool music, and wonderful artworks.

So I’m back. Did you miss me?

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3 thoughts on “ME and Me

  1. I think you’ve been really brave. Don’t bother pretending. We don’t mind hearing about what your going through, it must be really tough and you’re allowed to talk about it.

    • Thanks for the support Domi, it ‘s very much appreciated. I’m lucky enough to have some amazing people in my life who are battling far worse, which helps put things in perspective and gives me some great sources of inspiration.

  2. Pingback: Resolute: January’s Five | heidielka

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