Christian activists with Myalgic encephalomyelitis (ME) are praying...
An account of living with chronic illness.
Doctor’s waiting rooms are funny old places. I am currently sitting in mine, for the umpteenth time in the past two years. This place has become overly and uncomfortably familiar; the strangely small Microsoft Word-made posters, the weight measuring machine that is never ever used by anyone, and the wooden chairs that always feel like they are slightly unhinged from their base and may topple over at any moment. It’s not an unpleasant place – but I’d rather be less acquainted with it. A year and a half ago I contracted glandular fever, and have since been in and out of this waiting room, often leaving with the same depressing diagnosis from the doctors: ‘There’s nothing we can do’.
Living with a chronic illness can feel like perpetually being in a waiting room, existing in a limbo land between the world out there, where people go about their normal everyday business, and the world behind doctor’s doors, where treatable people go to recover. There are moments of health, when you see the doctor and are released into the outside world again, but before long you are back in the waiting room with the hours ticking by and wondering how your life has been reduced to this, and how long it will take for health to return this time.
In some respects I don’t feel qualified to write anything about ME. As someone positioned roughly half way on the sliding scale between health and debilitating fatigue, I can’t imagine the challenge of living with full-blown ME each and every day. And yet, scrolling through Twitter this week, I saw a lady and writer I admire – Tanya Marlow – who is housebound due to her ME, unable to write anything this week, on ME Awareness Week, because of her ME. Oh the irony.
I hope that I can use the small amount of energy I have well, and write on behalf of those who don’t have the energy to; I hope I can speak faithfully for them. Because we need more ME champions – people who care, people who campaign, people who understand – because people battling ME often don’t have the energy to speak for themselves, living quiet and exhausted lives of isolation behind closed doors.
There’s a lot of confusion around what ME, and what something like post-viral fatigue, is. So, to start off with, here are a few definitions:
ME: Myalgic Encephalopathy or “ME” (also sometimes called Chronic Fatigue Syndrome) can affect all types of people at all ages. Symptoms include severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration. In many cases, onset is linked to a viral infection. Other triggers may include an operation or an accident, although some people experience a slow, insidious onset. There is currently no accepted cure and no universally effective treatment. Those treatments which have helped reduce particular symptoms in some people have unfortunately proved ineffective or even counterproductive in others. For many years, ME was not considered an illness at all (information from the ME Association)
POST-VIRAL FATIGUE: A condition which manifests following a viral infection. The symptoms are the same as above, but often a full ME/CFS is not given unless symptoms persist for longer than six months. (Information from post-viral-fatigue)
I caught the virus in October 2013 and for six months afterwards suffered from post-viral fatigue. Having been tested for everything under the sun (and often willing it to be anything other than a non-diagnosable and untreatable thing, simply for progress and clarity) I lingered from month to month in a perpetual state of tiredness, wondering if I would ever feel normal again. Thankfully, in May of last year, health did return and I enjoyed relative normality again… until winter. With winter comes colds, and with colds, comes relapses to the fatigue. Sometimes for a few days, sometimes for a week, but thankfully not endlessly. My immune system is weak, and so I pick up everything and anything going – this week I have been slain by a nasty case of tonsillitis. But when I am well, and my health has returned, I am really well. I am one of the fortunate ones: I know a lot of people who live with ME for whom full health never returns, and for whom there is no guarantee that it will ever end.
It’s very hard to explain what chronic fatigue feels like. All people feel tired. So when you say that you have chronic or post-viral fatigue, people associate your feelings with their experiences of feeling tired. With all due respect, it just isn’t the same. Feeling normal tired and feeling chronic fatigue tired is a wholly different beast. It’s the difference between feeling sad and being chronically depressed. It’s a tiredness that is so heavy it actually aches, to the point where crying is the only hope of light relief. Verbal function goes, your brain becomes cloudy and you are physically drained to the point where you might actually collapse. It’s almost like extreme hunger, where all you can think about is when you will next eat – but in this case, fantasising about when you can next be horizontal with your eyes closed. It’s a tiredness that isolates you from people, because trying to function and form sentences in this kind of state is exhausting, and too much socialising wipes you out. It’s also an emptiness, a feeling of general grey or flatness. You are present and alive, and yet in so many senses are just ‘not really there’. Try not sleeping for a couple of days, add in a dollop of clinical depression, a touch of anaemia and maybe a hangover so severe that you can’t really see – and you might be somewhere near the ball park.
For many, fatigue and subsequent ME is a predominantly physical illness: they experience aches and pains, are actually physically unable to get out of bed, and in some cases are wheelchair or bed-bound for life. For me, fatigue is and was a mainly mental tiredness; on really bad days I might need bed-rest, but by and large I am physically able to do all that I would normally do, just at a slower pace. As well as having good days and bad days, at the peak of my illness I would experience ‘crashes’, or as a lovely friend Becca Dean (who writes about her ME at beccaislearning.com) describes it: ‘wilting’. On these days, I might feel vaguely normal and head into work, but then energy will suddenly disappear and a tiredness episode will descend. It’s almost like you are a balloon suddenly being deflated, and are left with your elasticky limp self, sprawled across the floor.
Living with illness of any kind is never fun, but there are a few things I’ve had to learn (or am learning) in this season. I hope the following is an encouragement to anyone facing chronic illness, and an insight for those who have never experienced anything like it (praise God):
Patience. It’s difficult to explain what it’s like to battle with a mostly non-diagnosable and non-treatable illness. The frustration of not really knowing what is wrong, the deep deep frustration of feeling so tired you could be sick but yet are completely unable to sleep, and the frustration of not knowing when this particular episode will end. The frustration of doctors not really knowing what is wrong with you or what to suggest. The frustration of feeling at war with yourself, your mind encased in a body that is so hopelessly and helplessly weak. I am having to learn to be patient. I now know that if I get ill, I have to completely stop - and I mentally block out the next week in my calendar, knowing that I probably won't be able to make any of my prior commitments. I am learning to be gentler with myself, and forgive my body for being ill. I am learning to ride out bouts of illness with grace (or at least am hoping to) as opposed to defiantly refusing to accept that I am ill yet again.
Acceptance. I think there is a period of mourning for your life which occurs at the start of a chronic illness, often tracking the typical stages of grief. I certainly went through phases of denial, anger, bargaining, and hopelessness before ending up at acceptance – and seem to go back through the stages every time I relapse. As someone who has always been highly productive, with huge amounts of energy to ‘do’ stuff, it is difficult to accept that I am now limited, and that this may be the pattern for the rest of my life. I can’t imagine how much more this is the case when your physical limitations are far more debilitating than mine. Learning to accept your lot – in whatever form that takes – is no easy thing. Learning to believe that your life is worth living, and that God values it even if it is mostly spent in a bed – is difficult for someone who has (to a fault, perhaps) prided themselves on achievements, of appearing super competent, and of being able to juggle lots of things. I am having to learn to accept simply being and not doing.
Learning to let people down. I used to think of others who suffered from ME or recurring illness as ‘ill’ people, or hyperchondriac types, a bit like the daughter of Lady Catherine de Barr in Pride and Prejudice, who is described as having a ‘sickly’ persona. By and large other people have been wonderfully gracious and understanding, but I can’t help but feel that they must wonder – as I’m sure I would have done if I hadn’t been through something like this – whether I am just a little bit sickly. Cancelling plans and arrangements with people becomes a way of life. I cannot count the number of times I’ve had to bow out of work commitments, social engagements, and responsibilities at church. I hate letting people down, and being seen as anything but totally sorted, and yet I’ve had to get very used to being a disappointment, a worry, and maybe even a burden.
Learning to depend on other people. Every time I am ill, I realise not only how frail my body really is, but also how much I need other people in my life. And every time I am ill I am overwhelmed by just how spectacular those people are, and how well they love me in these interludes. I am so unbelievably grateful for all those who feed me, laugh with me, sit with me, fetch things for me, ask after me and pray for me. In these moments people are Jesus to me, God’s vessels of grace and hope in my life. I only hope I can love people so well in future.
Not to take health for granted. It’s amazing how flippant we are about our health, until we are ill. As soon as we are ill, we would give a body part and all of our earthly possessions to be well again – and yet barely even notice our health when we’ve got it. My daily prayer simply becomes, ‘Please God, make me well’, in these periods of illness, and yet how little I thank God for health and energy once it has returned! While praying this typical ‘Make me well’ prayer the other day, God challenged me, asking: ‘And what would you do with your energy and health once it has returned?’ I ask the same of you: what will you do with all the energy and health you have been given? Are you grateful? Health is a glorious thing. Treasure it, and enjoy each and every day you’ve got it.
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