One day perhaps I’ll be all mature and balanced, and write a post called “12 Things Chronic Fatigue Syndrome Has Done For Me”. Today, however, I’m writing about what the experience of ME/CFS is like for me and the changes it has made in my life.
1 General fatigue
Then: I would walk three miles into the city centre and three miles back, sit down for a while and have something to eat, and feel a little bit tired but pretty well fine. Working ten hours a day was no problem for me. I could dash up and down the stairs carrying large boxes of books. I would go on a four hour train journey, including crossing London via Tube, and do a half hour walk home at the other end – with thirty books in my rucksack.
Now: I’m really tired on my good days; on my worst ones I might lie in bed for hours – and my case of ME/CFS is merely moderate. I can rarely see any of my friends and if I do it’s often a major energy expenditure because I have to travel on the train to do it. I do very little cleaning, or cooking. My bedroom is always messy and I haven’t been able to do nearly all the sorting I need to just to make sure everything has a place I can put it in when I am able tidy up. I haven’t vacuumed in months. Doing my laundry is a task that takes an entire day’s energy and can cause the dreaded Post-Exertional Malaise. Getting on and off the floor is really hard work, as is going up the stairs, or grating some cheese, or washing my hair. I can walk, but when I do I need to walk very, very slowly, like a frail elderly person, because that lessens the impact a bit.
2 Post-Exertional Malaise
Then: This just wasn’t on my radar except as it affected people I know who have ME/CFS. I could do that six mile walk, sleep, and be as good as new in the morning.
Now: In some ways this malaise is worse than the simple fatigue. Because, I do a thing, and then the next day I’m tired, and then the day after that I’m utterly exhausted, and the day after that I’m still utterly exhausted, and then, if I’m lucky, the day after that I’ll be starting to improve again. Of course, if I do anything beyond the basics on those three days, I’m liable to end up even more exhausted for even longer. Twelve days ago I travelled on the train to see a friend. Since then I haven’t done anything useful apart from write three Christmas cards, I’ve spent most of one day in bed and portions of the other ones resting. I had a terrible sore throat for a week and it’s still lingering – as is the tiredness, which is finally showing signs of letting up. So, every time I consider doing an activity, I have to think about the consequences not just over the next couple of hours, but the next week or two.
3 Aches and pains
Then: I’d have headaches, sure, a few times a year. Backache has always been a bit of a problem for me, but only when I was very tired.
Now: If by some strange chance I do make the dinner, stirring a big pot of food means my arms will ache the next day. Lifting heavy things makes my arms ache. Staying still for too long makes my legs ache. Washing up makes my back ache. Playing games on my phone too much makes my fingers ache. Walking too much makes my legs and feet ache. Sewing for too long makes my hands and fingers ache. Sitting in the same chair for too long makes my body ache. Being fatigued makes my body ache. Writing physically, with a pen, makes my hand ache. My head aches randomly for no apparent reason. Sometimes I get stabbing pains in my head or my legs.
4 Brain Fog
Then: I remembered everything. I mean, really. All my conversations with people. My technique all the way through the educational system was to do the minimum amount of work throughout the year, revise for two weeks, and pass my exams with flying colours – that’s probably why I ‘only’ got a 2.1 at university. I never used a diary, even when I was working shifts. I just didn’t need to. I learned fast, reasoned well and remembered brilliantly. I was articulate, and I was organised without even realising it. (Let’s face it, I was probably really obnoxious!)
Now: I can only concentrate on a thing for a few minutes at a time. I have to use a diary because if I don’t, I forget to do things. I forget conversations. It takes me time to think things through. I misread things. I forget words. I forget things I read. I just feel so much less intelligent. This is a hard one to get across, because I still appear pretty intelligent to most people, and appear to have a good memory and a quick brain. But this level of brain power is a serious and sudden reduction, and it’s frustrating and really hard to cope with because adjusting expectations is hard, slow work.
Then: Well, I was never exactly rich. But before I got fired for being too ill, I was earning £16,000 per annum, which was plenty to live on with a housemate. I could afford to pay all my bills and buy myself some treats and keep a budgie and a cat.
Now: I pay my share of the regular bills and I pay for my food, but that’s it. I live with my mum, and I don’t pay rent. Because of her generosity, I am still sometimes able to buy myself nice things – the difference is that I feel guilty about it now. The only benefit I currently get is ESA, and with that, I couldn’t afford to live on my own even with housing benefit. I simply couldn’t pay all the bills and buy food and other essentials as well. So, I am poor, and the only reason I live comfortably is because of someone else’s generosity. That’s demoralising.
Then: I lived in a city for a few years, and during that time I worked, and I made friends at work. I also went to a small group attached to my church, and made awesome friends there. I had the money and the energy to be able to visit friends, and friends were able to visit me fairly easily. So, I saw friends a few times a week.
Now: Because I’ve needed to move in with my mum (and I’m very grateful that she was able and willing to accommodate me), I’ve also ended up moving to a much more isolated area, one where I haven’t lived before. Since I’ve lived here, I haven’t had enough energy to go out and meet people in the local area, and the upshot is that I don’t have a single friend, or even acquaintance, within a forty mile radius. I can only rarely make it to the city, and my friends there have lives and don’t come here often. Most of my friends live further away, and while the city is a fairly easy journey from a lot of places, anyone staying there has to make a day trip out here to see me or I have to make one to see them (see above debilitating Post-Exertional Malaise). The vast majority of my social interaction is through the internet, and I constantly feel isolated.
7 Sensory intolerance
Then: Sensory stuff just wasn’t an issue. Often I barely noticed noises or smells. If I did, they didn’t bother me.
Now: Last winter I spent all of my savings on a pair of noise cancelling headphones. Extraneous noise is a huge drain on my energy. I don’t even bother trying to shop in my local Waterstones now, because they play music and it’s simply too much to cope with. Everywhere plays music: shops, shopping centres, restaurants, doctor’s surgeries. Noise is fine if I can simply sit and listen to the noise and don’t try to do anything else. But sitting in my room, with cars driving around the neighbourhood, aeroplanes going round and round overhead, children playing, lawnmowers going… I’d never be able to do anything! So, noise-cancelling headphones it is. Smells are a problem too; I have been known to leave opened packets of chocolate outside my bedroom when I’m not actually eating them, because otherwise I can smell them and, while they’re not as bad as noises, smells are just another energy sucker.
Then: I had enough money to live independently, and I had enough energy to do all of the things I needed to do when I was living independently.
Now: This is, of course, related to the issue of poverty, since I literally don’t get enough money to live on my own. But it’s more than that. We live three miles from the train station, two miles from the doctor’s surgery, three miles from the supermarket, four miles from the nearest town. I can get the bus to town; it takes a lot of my energy, but I can do it. For everything else, I rely on lifts from my mum. A few months ago, I seriously thought about saving up for and buying an electric bike, which I hoped would give me enough help that I could at least go to the doctor, or the supermarket, or even the train station, without always having to ask for a lift. But my condition has worsened and even an electric bike would now take far too much energy. I’d like to learn to drive; that would still take energy, certainly, but perhaps little enough that I could do it occasionally. In addition, I currently rely on my mum to do most of the cooking and cleaning, and most of the household chores, and it doesn’t feel good.
9 The General Inefficiency of my Body
Then: My body was not merely healthy; it was superbly healthy. I was never ill. My digestive system could take whatever I threw at it. Grown men winced at my handshake. I gave blood, which flowed happily from my veins like manna from heaven. My only visits to the doctor were to get my ears syringed. I simply never had to consider my health in anything; it was a given.
Now: Nearly two years ago, I caught tonsillitis and ended up with quinsy. I never recovered. It’s a typical ME/CFS pattern. Since then, my body’s efficiency has declined significantly. I’ve been on iron tablets twice. I’ve been low in vitamin B12 and vitamin D, too, so I’ve started taking a daily vitamin supplement in the hope that this will just boost my nutrient levels. I constantly have a slightly sore throat, which often flares up if I do too much. I usually have a bit of eczema somewhere (I get the sort which comes up in teeny itchy blisters). I’m frequently cold – and this is a huge change, since my body has always been almost excessively efficient at keeping itself warm. In the last couple of months I’ve spent a huge amount of money on clothes because I literally didn’t have enough clothes to make enough layers to keep myself warm! I still need to buy a few things, including a pair of slippers. I’m often sniffly, too, and have had to start taking hayfever tablets in the summer. My body is weak (nobody would wince at my handshake these days), my tummy is fussier, and I get headaches frequently for no apparent reason.
10 A Feeling of Uselessness
Then: I could earn my own living. I never appreciated the wonderfulness of this at the time. I had energy to spare for cleaning, cooking, laundry, caring for pets, seeing friends… anything I wanted to do, really.
Now: I can’t earn even part of a living. I depend on someone else to give me a home. I can’t contribute fully to the household finances (I may pay regular bills, but I can’t contribute to additional expenses). I can’t even contribute equally to the household tasks like cooking, cleaning and DIY. I contribute nothing to society or to people, other than just being a friend. And I can’t even be a great friend because there’s only so much you can do over the internet. I honestly feel like I just sit in my room, sucking resources out of the world and the people around me.
11 Weight gain
Then: My weight wasn’t especially difficult to control. I gained a lot when I was on antipsychotics, but it came off again when I stopped them. But I walked a lot, and I’ve always eaten moderately healthily. I’ve gained and lost but it wasn’t a problem.
Now: I’m gaining. I don’t mind being fat because of being fat. What I really don’t want is to buy a whole lot of new clothing to deal with my temperature problem, and then have to buy it again in a year’s time because I’ve got too fat for it all. I definitely don’t have the kind of money to do that. My eating habits haven’t changed significantly – if anything I eat more healthily than I used to because my family is obsessed with vegetables! But I can’t walk far, and I certainly can’t do any kind of vigorous exercise. I don’t want to diet. Dieting makes me miserable and I’m already pretty miserable from this illness. But it’s that or constantly spend money on clothing, and, of course, put up with the fat shaming which is one of the few still-acceptable prejudices in our society.
12 Lack of Fun
Then: I could do what I wanted; go where I wanted; buy what I wanted (within reason, of course!).
Now: I can read, but I can’t read anything too intelligent, because I can’t think properly, or too emotional because crying takes so much energy. I can watch films and TV, under the same conditions. But I was just starting to get into gardening when I got ill. I’ve found I enjoy sewing, but that’s hard because it makes my hands hurt. Seeing friends is usually out. I used to love cooking and baking my own bread, and I can’t do that any more. Writing is much harder work than it has ever been, both physically and mentally. My world has shrunk to my bedroom and my computer screen. Yes, there are things that I enjoy, but I’ve lost quite a few of my favourite hobbies.