Monday, January 29, 2007


OR On FMS, CFS, depression and life

I've had two insane dreams, two nights in a row.

Last night I was being chased by monsters who looked like people I love, with a group of other people with me. They wanted to infect me with monsterness so that I would become just like them. I had to get away and also protect the other people with me. But I couldn't run fast enough. I kept ending up in supermarkets and shopping centres. I knew I wasn't supposed to be there because those places tire me out, so all I could do was hide. The night before, I was in the halls that I lived in for two years at university, but I didn't have any money to buy breakfast in the dining room and everyone was eating all the toast while I got told I wasn’t getting any food. So I tried to get back to my room to find my money. But after negotiating a complex maze of corridors, I found that my room was locked – because of course, as it suddenly occurred to me, I hadn’t been back to it in the five years since I’ve left university. I ended up stranded in the corridor, being passed by happy, well-fed people who could get into their rooms…

It’s taking me so much effort to do anything. This post has taken me about three hours so far, because I regularly lose the will to move any muscles at all. Combination of pain and exhaustion not helping with that. My ‘to do’ list has been the same all month – listen to my audiobooks, do a bit of painting, look at my British Sign Language CD to catch up with the vocab I’ve missed, do a Hebrew lesson from the book… But I just keep sitting on the sofa. Chronic apathy. Think I could put it down as a symptom on my DLA form?

I am not getting used to any of this. Being told that I have a long-term condition that - although it will wax and wane, and could eventually be fairly well-controlled - stays around for life is not an easy thing to adjust to, OK? I have been pushing myself to stay almost psychotically cheerful for the past couple of months, so as not to upset or annoy anyone. Not to mention being so scared of being told it’s all in my head if I don’t. Well, it’s not all my head. (Oh. Technically it is, since it’s a neurological condition. Um. You know what I mean.) And I can’t keep pretending that I feel fine about all this. I miss having a job – I miss my students, and teaching. I miss having a social life. I miss having a life.

I think, therefore, that it may be time to admit that I'm a bit depressed.

I'm not depressed in a bipolar way, of course. This should be clarified. I could draw a distinction between depression and Depression here, perhaps. It has taken me so long to recognise that something is wrong because it's not as wrong as it could be. Bipolar-type Depression, capital D, is when I want to die, cut myself or sleep all day. I stop eating, have no interest in seeing anyone, get increasingly paranoid, have no desire to do anything, and can't focus on work or anything at all useful. Not much of that is the case at the moment. I want to work. I want to go out. I want to see people. I want not to be in pain. I want to go to a gig, or a play, or the park. I want to go out for a drink with friends. I want to go shopping. I want to be able to make dinner without having to sit down every two minutes because I'm about to pass out, or to have a shower without it causing me so much pain that I have to spend the rest of the day immobile on the sofa. I want my life back. Losing choices, independence and opportunities is making me frustrated. The frustration is making me anxious. The constant anxiety, eventually, is starting to make me feel very low. This is depression, small d. I'm not even sure it would qualify as a mental health problem. (It's also a well-known symptom of fibromyalgia. But I can't admit to that particular symptom, as The Girl points out, with my medical history.) It's just not nice. Extremely not nice.

But then – chronic pain, weird cognitive symptoms, serious migraines, constant physical exhaustion and all the rest are not nice, either. People have recently been writing good things to help other people understand this sort of thing. The marvellous Jillian wrote a fantastic post about Lupus and how it affects her every day, to raise awareness among her friends of what her life is like. On BYDLS, Carolyn just explained all the steps involved (and spoons lost) in having a shower and washing her hair. I’d really like to do the same. But, as I told Jillian last night, I’m too afraid. I’m afraid that, after years of learning to deal with bipolar disorder and raising awareness of it (pretty well, if I do say so myself), people will think I’m collecting diagnoses, seeking attention or just making a fuss. It could, therefore, be a little while before I can get my head around things enough to be comfortable with being more open about this condition and how it’s actually affecting my life. To challenge people who think it’s all in my head. To explain myself to those who are annoyed that I’m not managing to do what I used to be able to do. To learn how to cope better. To start moving off the sofa occasionally.

But, just to be clear: I am not OK just yet.

That’s about it for now, I think…


Kelly said...

I've read your posts from butyoudon'tlooksick and I've found you to be a kind, loving person. It's true that sometimes this burden feels like more than anyone could stand. You've had some big punches in a short time. A confirmed diagnosis, leaving your job, worry about income and how you're going to live. One of those are extremely stressful and you've got that and more. ~ Honey, let me give you a hug and reassure you. It won't always be this bad. You will have good days, I promise. This will pass. In the meantime, distract yourself. Get through one hour at a time, or 5 minutes. You will feel like doing things. It took me a long time to grasp this but You don't feel like doing anything right now for a reason. Your body needs you to lay low right now, and if you do for however long it needs, you will feel better. I speak from years of this. I encourage you to find tv or websites that make you smile. Refuse to let yourself think of a dreadful future (that is the quickest way for me to slip into a deep depression). It's not easy, please don't think I would ever mean this to sound glib. It's blood sweat and tears sometimes. But there's love, beauty, peace and a hearty laugh sometimes as well. I'm sending you and the girl lots of love and I will light a candle for you.

Naomi J. said...

Hey Kelly :) Thanks for the good advice, which I shall take. Thanks for the encouragement too. I know that things get better. It just takes a while. :)

Anonymous said...

this sucks and I wish I could make it go away for you. But since I can't do that (yet) I will continue to keep you in my thoughts and prayers.

And I will send healing and soothing energy your way.

And i will remind you that you ARE in fact doing a GREAT job of explaining and sharing and enlightening about what's going on, and that is AWESOME.