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Contents:

• Preamble / Introduction
• What Happened
• … Experiences, Counselling & Me
• CFS/ME
• The Road Ahead

Preamble / Introduction

Warning: This post is a little long. Feel absolutely no obligation to read any further unless you are actually interested in how I’ve been doing!

Still here? Good. There have been people who’ve asked how I’ve been doing. I thought it might be helpful to lay it all out here, somewhere I can direct people who want to know more than “I’ve been ill. Doctor said it’s chronic fatigue syndrome / ME *sadface*”.

I did for a moment wonder how this post should be titled. There were possibilities ranging from somewhat amusing (anything between darkly humorous and light-hearted fun) to plain and dry (anything between straight/boring and sarcastic/ironic).

In the end I’ve settled for what you read above. It seems appropriate since this is a bit of an open letter and I’ve no idea who is going to read it. Well, I know who isn’t going to read it, so I think I will be at liberty to make the contents of this post rather frank, where appropriate.

So if you are concerned, this post is for you.

A few closer friends (and some friends of those friends) and anyone who has cared to know (read: ask) will already know what’s been going on. Anyone who’s been paying close attention to my Facebook updates will probably have an idea too- though, anyone who hasn’t asked or I haven’t told, if they don’t check my Facebook then this post isn’t really going to change anything…

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What Happened…

Since starting my final year at uni in October 2009, I have being struggling against some mysterious ailment (for at least the whole of 2009 actually, if not since summer 2008).

Have generally been constantly lethargic, endured persistent headaches, had trouble concentrating and trouble sleeping. All my energy is gone and most of the time all I want to do is stay in bed- and I’ve done so, spending entire days in bed. Often I find I’m aching all over which doesn’t particularly make me inclined to move much. However, no amount of sleep or changes to anything else have done anything to improve my condition. I can have a whole night’s sleep (when I manage to sleep) and wake up in the morning just as tired as when I went to bed, if not more so.

When autumn term started and I kept feeling like this, I knew something wasn’t quite right. I was having great difficulty keeping up with coursework and it was making me miss coursework deadlines on a massive scale.

I went to see the doctor, go through a short questionnaire and he concludes that I have depression and proceeds to start me on antidepressants. But that’s not the end of the story.

I did react with some incredulity to this diagnosis and in particular to the suggestion that I’d have to start taking medication for it. While it was true my failure to keep up academically was getting me down, if I had ever felt blue before I’ve always been able to resolve it myself without any external intervention.

Having said that, by this point now where I was very fed up with my situation and just wanted it to stop. So I cared less about what it was exactly that was causing my problems and more about getting back on track.

A brief tangent now, not relating my main issue but provides a some context. Skip to after, if you want.

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Experiences, Counselling & Me

I think, relatively speaking, people would say I’ve been through a lot in my life- though personally I’m not at all bothered by it. I consider myself rather emotionally stable- perhaps this is as a result of my experiences or maybe it’s what’s allowed me to get through those experiences.

I will not go into the details here but to my friends reading this (if not, I’ve been wasting my time writing all this!): some of you will know already but if not and for some reason you really want to know the details then ask me some time and I’ll tell you.

Immediately after being told by the doctor that I had depression, I went over to see the counselling service. It’s nice how they’re both under the same roof. As I touched on earlier, if it was depression then I felt that it was something that I was more than capable of resolving on my own, as I’ve always been able to. I’m a stoic, I’m self-sufficient- I’ve had to be.

I’ll indulge in a bit of geekery now to help make my point. Because it’s fun. I think of mood disorders as errors in my program: I can run my own diagnostics (introspection and contemplation) and engage in a bit of debugging (think things through, work through my issues). All I need is time. Unfortunately, time was the one thing I was lacking. So I reasoned that if the cause of my malaise was indeed depression then I wanted to be rid of it ASAP. Time to bring in a professional: time to see a counsellor, a “QA Engineer” of the mind.

It was nice to have the counsellor to talk to but all in all, I can’t say that the counsellor (or antidepressant) was really all that essential overall. Together, they may have expedited resolving my “depression” by a few weeks but otherwise it wasn’t anything I couldn’t have achieved on my own. It would turn out that depression was perhaps more a symptom than a cause of my issues.

I’ll end this tangent with an amusing anecdote from my counselling sessions. According to the counsellor I apparently often came across as “angry”. I reacted to this suggestion with much amusement. I’m really a fairly mellow kind of guy, I think.

If I did ever sound “angry” then I wasn’t aware of it and I’ll put it down to my mild aspergers. Also, I’ll apologise here to anyone who’s ever thought I was angry with them- I can assure you this would be extremely unlikely. What I am aware of is that I’m good at “speaking with conviction” (“say it like you mean it!”) and my friends have described me as “impassioned”. I’d be somewhat shocked if I ever came across as angry. Also, I’m always conscious of my language to ensure I don’t upset anyone.

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CFS / ME

So anyway, fast forward to around a month ago. Depression is definitely no longer an issue but symptoms persist. I go back to the doctor who sends me for a blood test. The blood test comes back all clear and the doctor concludes that it’s Chronic Fatigue Syndrome. Well, I don’t care what it is, just make it go away! There’s nothing that can be done, the doctor replies. I just have to… pace myself.

I went away and did some reading up and it turns out that it actually explains all my symptoms (which depression never did).

I wonder if maybe things would be better now if the CFS had been caught earlier. Thinking back, there were warning signs as early as summer 2008. It’s probably not healthy to push myself as hard as I do. Perhaps if I hadn’t got so used to pushing myself I might have noticed that I was having to push ever harder but getting less back.

Anyway, what’s done is done. Important to look forward and move on. Have to take a step back and reassess. Have to take it easy a bit.

Turns out that I have friends who’ve also had to deal with ME, so it’s somewhat reassuring that I have people who I can talk to who understand.

I’ve joked that it would be easier to be missing a limb than to have ME. With ME, the burden of proof is on the sufferer. I do worry that people may see me on a good day and assume there’s nothing wrong with me- that I’ve just been pretending. So in a way, that actually makes me fearful of going out and being seen. That’s very isolating.

I won’t go into the details of what ME entails but if you want to know more, here is a good site: AYME: What is ME? (I’m about 70% on their Functional Ability Scale)

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The Road Ahead

The way things have played out, I’ve had to do something that is the last thing that I would ever want to do. I’m having to withdraw from my university degree for now.

Objectively, it is the only thing that I can do now because there is no way that I could reasonably expect to be able to complete the year now things have slipped so far beyond recovery- especially in my current condition. Nevertheless, I am adamant that I will not be a “college dropout”. I’m just taking time to recover and will resume my final year in the autumn. Part-time if necessary but hopefully full-time.

This time out isn’t just going to go waste: on the bright side, there’ve been many things that I’ve been wanting to do while I’ve been at university which I’ve had to put on the back-burner because I had to devote all my time to more academic concerns. I will definitely be working on my Final Year Project during my time out. Also, there are various skills and knowledge which I now have the chance to brush up on, with this time that I will hopefully now have.

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