Smiling Clare

I’ve known for a while now that my answers to the question “How are you?” are very different to that of most people, particularly those who are healthy. They sound very much the same as you’d hear from anyone else, and yet they mean entirely different things.

You see, when you first have a chronic illness you’ll say you feel unwell still, but there comes a point where you get bored of saying it, people get sick of hearing that you’re still sick, and quite honestly you reach a point where you just accept this is how things are. And so you just start saying things which don’t provoke questions.

That’s not to say I mind when people question my answers; I’ve had family members ask me what “ok” actually means for me at the time they asked. And I am perfectly happy to try and answer that; it shows they are actually interested in hearing about some of what I’m dealing with at the time. I know other people would rather not know even the smallest bit of detail about what that actually means for whatever reason, and that is perfectly fine to. Part of the reason I now answer the way I do, is because even I have got bored of telling people the details of how I’m actually feeling; the pain I’m in, the fatigue I have etc. I can only imagine how bored they’d get hearing it. But if they ask, I will try and explain.

There seems to be a bit of a scale to my replies to that question everyone asks, and I rarely really know how to answer. So I thought I’d share and see if anyone else has a similar thing.

So, How are you?

I’m fine. Usually this means my pain levels are at the lowest level they ever are, that’s not to say there isn’t any pain, but it’s only a constant ache, nothing major. Fatigue is bearable and I can think quite clearly. The dizziness is manageable as well, it only happens if I’m foolish enough to stand completely still or move too quickly. I’m basically at the best I ever get these days.

I’ll be able to manage a few hours watching television, read a few chapters of a book providing it is quiet, go out in my wheelchair for a few hours or potter around the house doing some of the less physically demanding chores.

HOWEVER, if you have asked me repeatedly over the course of the day, how I am, and I am now beginning to get fed up of answering, it doesn’t matter how I’m feeling there is a chance I will just reply snappily that “I’m fine” when in some cases I clearly am not, I’m just fed up with being asked!

I’m ok. It’s an average day. The pain levels are manageable, not quite as low as they could be but they are not at a level that will prevent me from functioning. The same can be said about the fatigue. I can think reasonably clearly most of the time, with the odd patch of brain fog to make life interesting; you will most probably find me referring to a very obviously named object as “thingy” or “whatdoyoucallit” or some other such description as my brain just cannot think of the word I want and should really know. There is a slight dizzy feeling when sitting completely upright with my feet down, so you will usually find me slouched in a chair with my feet tucked under me. Standing up has to be done slowly otherwise the dizziness overwhelms me. But generally as long as I’m careful it is all manageable.

I’ll be able to watch an hour or so of television at a time, read a chapter of a book if it’s quiet, do a bit of knitting or crafting, or perhaps manage a short trip out in my wheelchair. I’ll need more rest breaks in between the shorter ‘spurts’ of activity than I would on a good day.

Not too bad. It’s a little worse than an average day. Either the pain is at a higher level which is making certain tasks more difficult, or the fatigue is worse meaning I need to rest more than usual. Following a conversation isn’t as easy as it usually is either so you may have to be careful you don’t speak too fast, and be patient while I come up with my reply. The dizziness may also be worse, with me seated in a reclined position with my feet up in order not to feel slightly dizzy the entire time. The dizziness on standing up will pass quickly as long as I am careful but after a few steps you may find me clinging to a bit of furniture for support as another spell of dizziness hits before passing again. I have to be a bit more careful on days like this and everything is a little more difficult than it usually is.

I’ll be able to watch an hour or so of television at a time, read a chapter of a book if it’s quiet or do a bit of knitting or crafting. I’ll need more rest breaks than I would on an average day, and although leaving the house is still possible, it’s not recommended as symptoms will almost certainly flare even after a very short trip out in my wheelchair.

Not great/Not so good. It’s a bad day but not the worst kind of day. Both the pain and fatigue are worse than usual. I may have a headache so keeping conversation to a lower volume would be appreciated. Following a conversation is difficult and requires most of my concentration; I can only follow one thing at a time, so if I’m typing a message to someone, please wait until I’m finished, or ask me to pause so you can speak to me, as otherwise I will not only have no clue what you just said, but I will also, in all likelihood, write a message to someone which makes absolutely no sense. Brain fog is worse than usual too, so finding words and/or getting them muddled happens more often. The dizziness will likely be bad, but manageable providing I am careful; sitting reclined with my feet up, changing positions carefully etc.

I may not be able to cope with the television, the sound and bright moving pictures may be too much for my brain to compute. If I’m lucky I might be able to tolerate watching an old favourite children’s film on DVD or if it’s quiet I will be able to read a chapter or two of a book, however this is not guaranteed and I might have to give in after a few sentences. I’ll be able to keep myself occupied with crafts, colouring or knitting providing my hands aren’t too painful and my grip isn’t too bad. I’ll only leave the house if I absolutely have to; for an appointment which cannot be easily rearranged, and if I do that the hours/days which follow will require more rest.

I’m not feeling so well/I feel awful. This is most probably the biggest understatement you’ll hear. I want to lie down on the sofa, or in bed, wherever is quietest, and less bright. You may find I end up close to tears, frustrated and upset about just how unwell I’m feeling if I remain where I am. Following a simple conversation is taking almost all the energy I have, my pain levels are rising and the fatigue is making thinking difficult. My head hurts from trying to make sense of what you’re saying to me. I’m feeling slightly faint most of the time when I’m upright in any sense of the word. I need to go somewhere quiet and rest until the worst of this passes.

I can’t do a whole lot of anything. The television is often too much, and I don’t have the concentration to read even a single sentence of a book. I might be able to manage a bit of colouring but that’s about all.

I’m not feeling at all well. I want to go home, I want my bed. I am most probably close to, if not in tears, because I am overwhelmed by how bad I am feeling, or if I am out, because I am so disappointed I’m having to leave earlier than I want/expected to on top of being overwhelmed by the symptoms. My pain levels are rocketing, the fatigue is so bad I can’t really think straight and I probably have a pounding headache too. I’m feeling rather faint when sitting up, and it’s taking all I’ve got to put a brave face on that. It’s taking all my energy to cope with all the symptoms my body is throwing at me. I just want to curl up in a ball and sleep until it all goes away (although I probably won’t be able to sleep because of it all and so will just have to curl up and endure it until something gives so I can sleep)

In all honesty there are variations to those answers, and I may not have all the symptoms described when I answer, but you can be sure there’ll be some of them present. The truth is I can’t put every possible answer to that question in a blog post, so I’ve picked the ones I use most, and described some of the possible things I may be feeling at the time I say it; there may be other things going on, it may be only one certain aspect of my illness is worse than usual that day. The main thing to take from this post is that the face value of my answer probably means something very different to what you would expect it to; keep that in mind when you next ask me, or anyone with a chronic illness or disability how we are.

A big part of life with M.E. or any other chronic illness for that matter is how isolating it can be. Being too unwell to leave the house for long, if at all, makes for quite a lonely existence.

Back in 2005 when I first became ill, loneliness had more of an impact than it does now. Back then we’d not long got broadband, and only had the one desktop computer that the whole family could use. The internet was still a bit of a new thing. I went from socialising every day in school, to being stuck at home on the sofa rarely leaving the house. And when I did leave the house it was mostly for doctors appointments. There were very few ways to keep in touch with friends; the odd letter or text message was sent and received but there wasn’t many other ways to stay in touch. Email and instant messaging were just emerging, and to do that you had to be well enough to sit at a desktop computer, not just lie on a sofa.

Things have changed so much now, the internet and mobile devices make staying in touch with people so much easier. A simple message can be sent while lying on the sofa or even in bed. It also provides a place to meet people who know what we are going through, who have the same illnesses, and who can relate to how we are feeling.

Don’t get me wrong, life with chronic illness is still lonely. Nothing can ever replace real life company and conversation; actually having people there for you, offering a much needed hug and support when things get particularly tough. There are days when I’m too ill for social media, or to reply to messages, when I want the comfort I get from talking to a friend but I’m simply not well enough to put a message together or cope with the screen on a phone, tablet or laptop.

There are times I need a break from social media and using my phone, even if I’m feeling fairly okay, sometimes I just need to switch off from being online. But there are drawbacks to that too. Unless I’m well enough to be doing other things, keeping myself occupied, the loneliness sets in.

A short, simple message can literally make my day when I’m feeling particularly lonely. It can be hard for me to reach out; I don’t want to bother a friend who may be feeling particularly unwell themselves – most of my friends have similar chronic illnesses to me – because I don’t want them to feel like they have to reply to my message. But at the same time I long to have a chat with someone, especially someone who can relate to how I am feeling.

Sometimes all I long for is a hug. No pressure to talk, just the comfort that comes from being wrapped in a hug. That’s the one thing social media, and messages can’t replace. But social media and forums do help ease some of the loneliness, even just knowing that there are people at the end of the internet to talk to.

If you have a friend with a chronic illness, why not drop them a short, simple message today? You could be the only person to do so, and it can mean the world to them. Take it from me, someone who knows.