Introduction, part 2.

Of course, it would stand to reason that, given all the thoughts and ideas floating round in my head, I would have not even the remotest clue what my first real post should be about. So I shall kick things off by being a bit more candid about my illness, and how it affects me in general.

There is no such thing as a typical day for an ME sufferer. I’m sure many of you have read, which is a good way of trying to understand how people with chronic illness make it through a day/week/lifetime, but it’s not at all specific, not to mention the fact that it was written by a Lupus patient. It does make a good read though if you’re new to chronic illness, and I would recommend it.

Now, since this is what you’re here for, onto me. And ME.

Let’s assume the day begins when I wake up. What time the day begins varies from day to day. Sometimes it’s 8am (like this morning), sometimes 2pm. Whenever it is, I wake up tired, almost as if I haven’t slept at all. I literally don’t remember the last time I woke up thinking “That was a nice refreshing sleep.” On the other hand, I can recall, all to well, a vast number of instances where I have woken up thinking, “What did I even bother sleeping for?” And the answer is usually: “Because my body refused to let me do anything else.”

Sometimes my body allows me to eat some form of breakfast. Typically, this is a very small meal; a piece of toast, or a child size portion of cereal, sometimes just a cup of tea. Then follows a few hours sitting on the sofa in front of the TV, or a similar amount of time at my computer catching up on facebook, all the while hoping that the pain will go away for a bit so that I can get some chores done. Sometimes it does, sometimes it doesn’t. My muscles burn and ache as though I have run a marathon the day before. My head pounds, and throbs at the slightest noise. My stomach churns and makes ungodly noises and smells, regardless of what I’ve eaten. My skin burns and itches. I faint, I fall, I sprain joints and I can’t always get up again afterwards. I’m confused, disorientated, and forget things. I neck a handful of painkillers and antihistimines, and wait for the pain to stop. I’ve been waiting a long time.

At some point during or following my “morning”, I have crawled back into my bed, hoping for once to sleep it off. It’s not a choice. My body gets to a point, somewhere around 2 hours after I have woken, when it just stops. Moving becomes an insurmountable task, trying to talk, think, respond sensibly to any stimulae becomes a distant hope. I go back to bed, not because I want to, but because I have to; my body literally won’t let me do anything else.

Lunchtime generally doesn’t exist in my world. The closest I usually get is a small snack around 4pm when my son returns from school. If it stays in my body for more than 30 minutes, I consider the meal a success.

Afternoon and early evening, when I am awake, are usually a blur. I stay in my bedroom most of the time, as my computer is close enough to my bed that I can fall into it if needed. I may play a gentle video game or two, or watch some downloaded TV shows. I watch “pretty” shows, since following anything with an involved plot makes my head hurt, and I can never remember what happened in the previous episode. I like to try and be awake when my son gets in from school, but I frequently fail. He no longer minds.

Once he has gone to bed, I generally like to try and squeeze out and hour or two of living room time. I often have to make a choice between doing a chore (a load of laundry, a bowl of washing up) or eating an evening meal. Both require the same amount of energy, and whichever I choose to do, I will spend a goodly while afterwards unable to get off the sofa. Sometimes I can’t do either, and skip right to the couch. More painkillers follow, and then more sleep.

When I sleep, a great deal of unusual things happen. Sometimes, my body shuts down a long time before my brain does, and even when I am so tired I literally can’t move, I am often not asleep. Conversely, sometimes my brain stops functioning well before my body does, and while I’m technically awake, I’m basically a zombie. I have stopped trying to dictate my own sleeping patterns. If I try to force myself to sleep, I only end up in more pain. If I try to resist sleep when it isn’t welcome, I end up in more pain. See the pattern here?

Straightforward operations that I have trouble with haunt me every day. I can’t carry anything heavier than about 3lbs without causing extreme pain in my shoulders, arms and upper back. Walking causes hip pain, cramps in my calves and thighs, and numb feet. Most of the time, the pain caused by moving is a dull, white noise, decorated with blinding flashes of hot agony that make me stop in my tracks and cry out. You haven’t lived until you’ve collapsed half way down the stairs because the pain of changing minor altitudes is so overwhelming.

Despite all this, I do sometimes make it out to socialise, although it’s a rare occasion. I don’t drink anymore; even the smallest amount of alcohol makes me unwell these days, and doesn’t get me drunk anyway. Caffiene has no obvious effect on me, other than the calming feeling of lactose in my stomach, which lasts until my bowels no longer want to have anything in them. That feeling never lasts more than an hour. If I do go out, it has to be in a car, or on a train. Travelling on buses is one of the most painful experience¬† I can put myself through. The rocking motion, bumping up and down, exhaust fumes, noisy human passengers and deeply uncomfortable seating is akin to being roped to the back of a truck and driven at speed through a nettle and cactus field.

On arrival at whichever event I am attending, I usually warn my hosts that I may need a quiet corner to crash out in, or I may need to leave embarrassingly early. I try not to travel too far from home, or the process of returning home becomes an impassable obstacle, and I end up stuck somewhere. If I forget any of my “ammunition” (earplugs, indigestion tablets, painkillers, an eyeshade/sunglasses, gloves or heaven forbid, my mobile phone), I usually end up going home so early that a lot of the time, other people don’t even know I’ve been there.

I have had a few sexual partners since my diagnosis. Sex is one of the few things I still occasionally enjoy, since I can do it lying down and I don’t have to move anywhere to find a bed afterwards (generally speaking, anyway). My libido spends most of it’s time in hiding, but can be coaxed out for the right price. I don’t orgasm anymore; my body can not pull together the energy required to climax, and I’ve long since stopped caring.

Having said all this, it’s not everyday that all of these things affect me all at once, so from time to time I can cook a full evening meal for both my son and I, enjoy a quiet evening with friends, finish the washing up, or even get a bit of shopping done, and the day I can get one of those things done, I feel incredibly proud. However, I watch my peers (usually via the joy of the internet) accomplishing these simple tasks every day, sometimes several times a day, and the pain in my heart is palpable. All I really want out of life is to be normal, or at least something approaching it. I’m jealous of people who get up every morning, eat breakfast, go to work, come home, spend a few hours with their loved ones and then enjoy 6-8 hours of refreshing sleep. I don’t want to be a movie star or a mountain climber or a brain surgeon. I just want to be a functional version of myself.


~ by surprisingme on March 17, 2010.

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