What ifs and worries


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I am still awaiting a diagnosis for the mystery illness that has plagued me for nearly three months now. This past week has been particularly rough: last weekend I barely had the energy to do anything, save a couple of hours of cooking/chopping on Sunday for preparing healthy food to eat in the week ahead. I even missed two dinner parties last weekend because of fatigue, something that for me is completely unheard of. Anything that involves dinner, a glass of wine and my friends normally shoots to the top of my priority list, but I just couldn’t push through the tiredness. Resting sometimes just doesn’t seem to help at all.

This weekend I’ve tried tidying the place a little, but it has been slow going. I live in a small one-bedroom flat, and while it gets cluttered and looks messy very quickly being small, it thankfully doesn’t normally take long to clean up. But normal doesn’t apply at the moment. Yesterday I swept the floors, then needed to lie down for a couple of hours. Then I mopped the floors. Then needed to lie down for a couple of hours. Then I washed the dishes and put some laundry in the machine, and had to rest for a bit. After doing those things, I felt too tired to cook dinner, so I bought some pre-made salad from the local shops. Today, after yesterday’s efforts, a quick trip to Woolies and cleaning the shower screens has me completely knackered–I’m resting up now so I don’t miss another dinner party tonight. It’s all quite ridiculous.

The process of figuring out the problem is also in itself exhausting. The MRI I had last week was surprisingly terrifying. Going into it, I felt fairly calm. Having ridden angkot and the TransJakarta (public transport) in Indonesia and having gone caving in New Zealand, I don’t feel that I am particularly claustrophobic, so I wasn’t worried about that. When I was inside the machine, it wasn’t too cloying. But it was the noise that terrified me! I don’t like loudness, and the machine was just so, so loud. They put headphones on me blasting tinny-sounding commercial radio to try to cover the noise, but it did nothing except irritate me and make it worse. So many ads for Subway sandwiches in such a short time! Why do so many medical appointments involve commercial radio?

Anger at whatever breakfast duo I was subjected to aside, for the half-hour or so I was inside the machine, I also didn’t have anything to think about besides trying to stay perfectly still, trying to not freak out–and meditating on why I was in the machine in the first place. Was it supposed to go for this long? Had they found something and were looking more closely at it? What if I had multiple sclerosis, which is what they were looking for? What if there was a tumor?

I somehow managed to lie still in there, but when I got out I felt like jelly, and when I was trying to get dressed again my hands were trembling.

After all that, I saw a specialist this week, who told me my brain MRI was fine (which was a huge relief), hit me over with the hammer thing to check my nerves and then ordered a whole heap more tests. It was fascinating to see the pictures of my own brain though–while I was freaking out inside the machine, my brain looks totally calm in the pictures! All in a day’s work for the brain.

Anyway, more tests took me back to the pathologists, who I have visited so many times since May last year. Apparently I have very fine veins, but the clinic I go to always seems to manage to find one to get enough blood out of for the tests, even if it comes out painfully slowly. Until this week. Six attempts by three different pathologists, and they couldn’t get a drop. After profuse apologies from them, and also from me for having such crappy veins, they told me to come back the next day. So I prepared by drinking a ton of water, having a hot shower, lying under my doona right up until my appointment and wearing a coat to the clinic to stay warm. All this preparation worked and they got it in one. But then it became clear how much blood they needed to take for all these tests! Normally it’s just a couple of vials, but this time it was a lot more. I felt a bit woozy afterwards, but not too bad, and I figured I would be fine after eating something, so just went into the office. Then the dizziness hit me like a ton of bricks! I had to lie down on the floor for a bit, and one of my colleagues drove me home. I couldn’t do anything all day, even having some toast was difficult, making it while clinging on to the kitchen bench.

I know people struggle with illness for longer, and face much, much more than what I am going through now. So I don’t want to sound like a whinger. But I haven’t felt like myself in months. Engaging socially can be really draining, but I don’t want to be some kind of lonely 29-year-old hermit. I enjoy my job, and my colleagues have been amazing and going there each day (part-time at the moment) gives me structure, but I often feel like I am doing terribly at it, which makes me more frustrated. Every day I have to go home early feels like a little defeat or failure. I love spending time with my friends, but at the moment I find my concentration can drift and it’s sometimes difficult for me to stay in the conversation. I hate needing to lie down for large swathes of the day, unable to read or do anything useful as fatigue turns my whole body heavy. I hate feeling like I’m only just managing to do the bare essentials, having to budget energy carefully to do anything beyond the minimum. And I hate feeling achey and tired and foggy-headed all the time, with varying degrees of severity: but never feeling good, normal or healthy.

And above all else, I am really scared that this is going to drag on. It has been nearly three months… what if it ends up being three years?

2 Responses to " What ifs and worries "

  1. I do hope this resolves itself. This sounds scary. Have the doctors made any suggestions at all about what to do. It does sound like chronic fatigue but I only say that on the basis of almost no evidence or knowledge at all. I can see that you are getting really worried. Sorry I can’t be more helpful

    • Ashlee says:

      Thanks Wendy, yeah it has been quite stressful (and frustrating). The doctors haven’t given me any advice on what to do other than to rest, which isn’t doing anything. As more and more tests come back clear it is moving closer to a diagnosis of chronic fatigue (which they can’t test for–it is a diagnosis of exclusion process). They are also still investigating whether it could be something autoimmune. Thanks for your kind comment, I hope you are well.