A State Of Unrest: Neither Triumph Nor Tragedy

When I first met the woman who would become my wife, she didn’t look ill. This was 1996, and I had just moved into staff accommodation for the job I had taken in London. I was in the lounge, a day or two after moving in. Bev was coming back from a weekend visiting her parents, and as she made her way to her room, past the lounge, she carried with her a computer. Like I said, this was 1996, so carrying a computer was no mean feat. My memory tells me that a friend was helping her. She may not have looked ill, but she was. At that stage she didn’t know what the problem was; she was increasingly tired, increasingly drained by the shifts she was working, and subject to a variety of tests to discern what the problem was. She moved job, within the same project, to an office-hours role; but the health problems didn’t go away. Some days she wasn’t able to get out of bed; not in the sense of simply feeling tired. In the sense of being unable to move. As a series of diagnoses were ruled out, eventually one was ruled in: M.E. – also known as Chronic Fatigue Syndrome, or (more cruelly) Yuppie Flu. No one really knew what that meant; allergies were tested for, but none found. Anti-depressants were prescribed for someone who wasn’t depressed. Some people live with M.E. for life; fortunately for Bev, she recovered.

Chronic Fatigue Syndrome is still, in some places, a controversial disease. The film Unrest (which I watched on Netflix South Africa) is a striking and moving self-produced documentary about one young woman’s experience of the disease and her attempts along with other sufferers to build awareness and get better treatment for it. Along the way there’s much that’s disturbing and light-shedding to learn: 85% of sufferers are female. Many medical ‘experts’ refer to it as caused by childhood trauma (known as conversion disorder – what was in times past called hysteria) despite a dearth of hard medical evidence to support this. In Denmark, a young woman suffering from the disease was forcibly removed from the care of her parents and treated for mental illness against her will for three years; at the time the film was released, she was still ill. We meet one young man who has been so afflicted by the disease that he has been unable to speak for a year. We watch the woman at the centre of the film lie motionless on the floor; we watch her and her husband both laugh and suffer through various attempts to change life-style in order to find a cure. We learn that with Chronic Fatigue Syndrome – as with many other chronic diseases – there is strong correlation with depression and suicide.

woman with crossed hands

Photo by Nelly Aran on Pexels.com

One moment in particular bought me up short and caused me to recognise myself. After a period of elevated activity and stress, we watch a sufferer ‘crash’ – shake uncontrollably as she lies on her bed; a response that we’re told happens after periods of emotional or physical exertion. This felt familiar; I have Ankylosing Spondylitis, a chronic, incurable arthritic disease affecting the spine and many other joints, along with a variety of other symptoms. I have been in various levels of pain every day for around 20 years; I can’t remember what being pain-free, and not taking medication, feels like. That also coincides with the length of my engagement and marriage. Occasionally, in the relatively early days before medication was found to manage my pain, I would shake uncontrollably from the pain as I tried to get in to bed or put on socks. One day I found myself shaking uncontrollably in a more or less empty school chapel, a few minutes after presiding at the funeral of a friend murdered by terrorists, a funeral filmed by television cameras, attended by over 1000 people including Desmond Tutu. It was, by any definition, a period of intense physical and emotional stress. I shook for about 30 minutes, and when I got home afterwards I barely moved for 3 days. The shaking was variously ascribed to needing something to eat, the heat in the chapel and plain old tiredness – all of which probably played a role. But from Unrest I see now it was also the crash of the body responding to the stress of keeping my diseased spine and joints functional under immense pressure. With pressure released, a valve was opened and the stress could be let out.

A.S. is not Chronic Fatigue Syndrome, but like many chronic diseases it is misunderstood and under-researched; both are more common than, say, M.S., but much less well-known or understood by medical professionals, let alone the general public. They are both invisible, and that is often the hardest part for the sufferer and the ones supporting them. Time and again I, for instance, will have to say ‘no’ to helping push a car or move a stack of chairs because of invisible pain. No one will give a sign of compliant; but you can’t help thinking … do they believe me? Am I really that sore? People will talk of being able to do … whatever it is … with a sore back, so you should do; doing another thing after a short night’s sleep, so the CFS sufferer should. This rarely happens to me these days; though many years ago, in a job reference, my then employer referred to me as ‘lazy’ for sometimes not helping with physical chores when I was in pain. I didn’t get the job.

As Unrest moves to its conclusion another resonant point is made. The narrator reflects that many diseases (I might name, for example, cancer) end with either ‘triumph or tragedy’. In my example, you become either a cancer survivor, or – like my mother – you die after a ‘brave fight’. We’ve all heard those phrases used. For CFS, AS, and diseases like them, neither happens. You just keep on. Just keep going. Some join you on the road for a while; but you learn to spot the moment when they realise that there will be neither triumph or tragedy, and they stop asking you, stop checking in. And God forbid you, the one suffering, say how hard it is. Struggling, finding it hard to bear the pain and the fatigue and the brain fog and everything else for 20 years past and 20 or more to come; none of that fits the convenient matrix of triumph or tragedy. There’s no prize for just getting out of bed; no awareness month for diseases that just keep on going. Carers lose support and friends; people grow weary of hearing how your finances are affected; how your sex life is affected; why you’re looking sad today; why you’ve put on weight. I’m still here, goes the song at the movie ends, in neither triumph nor tragedy. That’s the goal of the chronic sufferer and supporters – just to keep on keeping on; to many observers it’s an awfully boring goal.

Meanwhile, as Unrest highlights, some researchers do keep working to learn more. As money is raised and spent in its billions on the diseases which end in triumph or tragedy, research on chronic conditions like CFS and AS continues relatively unnoticed and massively underfunded and significantly misunderstood. Films like Unrest will make a difference; as will Becoming Incurable (which will focus on AS amongst other conditions), currently in post-production. For now, people like those in the film, like my wife, like me and many others will keep on, keeping on.

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On running, walking, losing weight and receiving grace

On running, walking, losing weight and receiving grace

pexels-photo-1003685.jpegThere are many losses associated with chronic illnesses. I’ve written about this before, so it’s really nothing new. One of them, for me, has been taking part in sport that I love. First is was football – which at one stage I was playing twice a week. When you have a disease like Ankylosing Spondylitis, a contact sport like football really isn’t a great idea; before I was diagnosed I would end every game with what I thought were excruciating shin-splints. I haven’t played any sort of football since then; even kicking a ball too and fro for 10 minutes with my foster son will now leave me in significant pain later in the day and into the next. Then there’s a running. I was never the sort of runner who would take part in races or even run that far in the scheme of things. But I did do it, and I did enjoy it. However eventually the resultant leg and ankle pain became too much and I had to take a pass. Then there’s the gym; which I also quite enjoyed – but the advent of foster children meant we could no longer afford that.

So what to do about exercise? As it turns out, not much. Apart from walking a bit, nothing really. It turns out (who knew?) that a lack of exercise, especially when combined with combatting depression with food, isn’t great for me. You’d have thought I’d have noticed my ballooning waistline, and I kind of did, but I’d been too preoccupied with becoming a parent, dealing with stress at work and in other places to notice. Now that one or two (but by no means all) of those stresses have lessened, the issue has been forced to my attention by a confluence of factors which I can’t really talk about here. When I asked my therapist why I suddenly found myself dealing with this now when it seems like it’s been an issue for a long while, the response was simple; it’s the next thing on your list, and now you can get to it.

As a result, on Saturday morning I found myself awake much earlier than I would otherwise have chosen to be, on the path around a local park with about 900 people, the self-penned refrain of ‘You’re fat, ugly and disgusting and everyone will be laughing at you’ careering round my head. It was my local Park Run. There are 1000s of these round the world and they are, it seems, undeniably a Good Thing in the democratisation of a sport which can seem reserved for Other People. Park Runs are free, community organised 5km runs for people of all ages, abilities and backgrounds; there’s probably one not too far from you. For me it was more a Park Waddle – like many, I walked the whole way. I didn’t exactly enjoy it, but neither did I hate it and there was a pleasing variety of dogs along for the ride with their owners.  Sadly, there was none of the post-exercise adrenaline high and mental stimulation that I used to get. What it was, was a welcoming, non-judgemental, relaxed environment – which for at least a morning got the recurring litany in my head to shut up. Maybe that should be enough of a high for now.

I need to go back, to make this regular – and more than once a week. The day I’m writing this is the Wednesday after the Saturday, and I haven’t done much since. I won’t be able to go this Saturday as I have a pre-booked meeting I can’t (and shouldn’t) get out of; but I should be back the week after.

Having lived, and preached, and prayed for many years now I know experientially as well as intellectually that I’m not accepted because of my bank balance or preaching ability or ministry amongst the poor or my health or my looks or my weight or anything else, but simply because of what Jesus has done and says about me. Every time I think I’ve grasped it properly, another layer is peeled off to help me realise I haven’t and I like everyone else am addicted to earning approval and love instead of receiving grace. Here I go again, battling to receive what’s free and desperate to earn what I’ll never properly get.

One of the supposedly little things that makes it harder is that it feels like so many people I know run, and run effortlessly. At least 2 people I know have just completed an Ironman Triathlon. It feels like I can’t move in my social feed without details of someone’s run: a map, distance, time, calories burned etc. You know the drill. If they can, the lie goes, I can. And should.

Maybe I can, maybe I can’t. I want to stick at it; I hope I will. I don’t know if my AS will allow me to run, or if my park run will forever be a park walk. Hopefully it won’t be a waddle for too long. If I lose a little weight, and allow myself to receive grace a little more and strive after acceptance a little less, then it will be worth it.

What’s normal anyway?

To those whom much has been given much will be expected – or something like that. It’s the Bible’s equivalent of the maxim directed at Spiderman: ‘with great power comes great responsibility.’ Much what, though?
To two learning disabilities, depression, anxiety, ankylosing spondylitis, I recently had added a diagnosis of AD(H)D. I but the ‘H’ in brackets because we’re not sure yet quite how much ‘h’ there is in me – the hyperactivity of Attention Deficit Hyperactivity Disorder. I’ve been on Ritalin, the medication of choice for this, for a couple of months now and the effect of it has been transformative. Is this what I’ve been missing out on all this time? Does everybody really have the capacity to sit down and just get on with stuff and not be fighting a permanent battle of distraction? I thought my magpie mind was symptomatic of the human condition, not a quirk of my brain.
There’s often a worry with treating this kind of thing that in doing so you lose some of the spark that makes someone unique, the fire of creativity, the fingerprint of the personality. I’m still learning about that, and how to make sure my whole family gets the benefit of the more focussed me – not just those who happen to come across my orbit in working hours. There’s much for me to learn, and yes I’ve been leant A Useful Book that does actually appear to be useful.
It’s quite a cocktail of diagnoses now. One would be more than enough, but there’s web of corollary, apparently between them. People with A.S. get depressed; people with depression get anxious. People with ADHD have learning disabilities. Chicken? Egg? Who knows.
None of them are going to kill me (I suppose you could argue that depression could, but you know what I mean); all of them are limiting, restricting in some way. It’s quite a collection of limits that I’m constantly learning to live within, to navigate around. Someone said to me that I now have a better idea of what makes me unique and special which is an interesting way to look at it. I’ve been living with me for a long time now and don’t think of me as unique – in my eyes, I’m normal. No matter if I’m normal or unique (or both), it feels as if this collection of defining characteristics is enough to be getting on with. If much is required of whom much is given, then what exactly is the much expected of me? Some days getting out of bed feels like an achievement (I spent 3 hours in a hospital waiting room for someone else yesterday; as a result of the dodgy chairs my A.S. is flaring which makes every moment of ‘normality’ today a victory); some days, filling out a form by hand is too much (thanks, dysgraphia!). Is the much that’s expected of me just to live, exist in a way that most people would recognise? Or is there more? What’s God’s call? To live within the limits, or transcend them like a bad afternoon tv-movie?
If only we all came with some sort of personalised users manual, telling how to get the best out of us. Everyone has to wrestle with these issues, of course – what am I for? It’s just that when you seem to have more quirks than others, it feels trickier to navigate.
We don’t come with user manuals, of course. We do come with an image, an imprint of a creator but that feels increasingly marred and chipped and cracked. And how do you speak of that when there’s so much about you that feels like it doesn’t bear the stamp of a wise and good creator? Is the image of God about perfection because God is perfect, or is it something more complex than that? There’s something there about our calling  – to steward creation on God’s behalf, and that creation presumably includes ourselves. So what does stewarding myself mean when the reflection is warped?
Questions, and few answers. Assuming that I now have the last of the diagnoses – at least for a while – maybe I can start to discern a way forward. Today this is less of dead-weight then it is a challenge to be surmounted, a puzzle to solve. It doesn’t oppress me today, but it does present these questions to which I struggle discern answers.
My only conclusion: normal is an illusion. There is both no such thing as normal; and also that normal is whatever your state is, wherever you habitually land. It’s not a target to be reached; if you see it that way it will always be out of reach. Instead it’s simply what you are.

Bored

I’ve been hearing the complaint ‘I’m bored‘ quite a bit recently. I suspect it’s because I’m still relatively new to this parenting business; give me a couple of years and I’ll be, well, bored of hearing it and I’ll stop noticing it. I haven’t found a skilful retort to it yet, and I doubt I ever will.

The truth is that I spend much of my life bored. Not in terms of needing entertainment or occupation; between my job, family life, TV, movies, books, dogs and video games there’s plenty of stuff for me to do.

No. I’m bored of something that’s always there.

I’m 42 and I’ve been in pain for over 16 years. Illness. Pain. Sickness. I’m bored of it. I’m bored of the audible crunch of bones in my neck and spine when I turn my head on a cold morning; I’m bored of medication every day; I’m bored of explaining my condition; I’m bored of having to spend so much money fighting it; I’m bored of doctor’s appointments; I’m bored of not being able to play football; I’m bored of being sore after walking, standing, sitting or lying for more than an hour (all told I do a lot of walking, standing, sitting or lying for more than an hour); I’m bored of answering the question ‘does your illness define you?’, a question only ever asked by people with no chronic illness themselves; I’m bored of it affecting my sex ‘life’; I’m bored of not a single Christian ever having had a ‘word of knowledge’ about Ankylosing Spondylitis because they’ve probably never heard of it and certainly can’t spell it (and yes, that includes people from Bethel as well as your personal favourite healing ministry); I’m bored of well-meaning but ignorant advice; I’m bored of the guilt at not doing the physio I should be doing; I’m bored of doing the physio I should be doing; I’m bored of missing out; I’m bored of being tired just because I’m ill; I’m bored of my lowered immune system; I’m bored of people telling me about their ‘bad back’ because they think they relate; I’m bored of people thinking they can’t talk to me about their stuff if they know I’m sore; I’m bored of people asking ‘how are you’ and not really wanting the answer; I’m bored of the voiced and unvoiced judgements … if only you’d do xxx then you’d be better, you are a bit overweight, after all; I’m bored of having to opt out of moving chairs and tables because it will hurt and worrying about what people think of me for opting out; I’m bored of listening to that worry and helping move the table and then being in pain for a day; I’m bored of choosing between playing with the kids or being in pain later.

And here’s a truth. Others are bored of all that too. It’s part of the curse of chronic illness. Sometimes I wish I had an acute illness. Cancer, or something else that has an end point for better or worse. When people first find out about your chronic illness, they’re sometimes interested. They ask questions which you answer wearily because they show interest and you think they might want to help or ‘walk with you’. And they do, for a while. They pray with and for you. Maybe they help with something that you can’t do. But then, mostly, often, they get bored. They never say it, of course; they may not even be aware of it themselves. But at some point it becomes clear that this disease isn’t going away, that it isn’t my fault, that the prayers aren’t going to be answered like that. One time a couple of people offered to sit and pray with me regularly for my AS. I was thrilled. We met twice. So people back off; they don’t walk with me and my wife. They check in every now on. But they haven’t got time for me and my illness. A small handful have. But people back off. They get bored of my need, my story, my pain. People get bored just walking with me, with no apparent end to the journey.

I’m bored of that. And deeply, pathetically, tearfully, grateful for those who do just keep walking at my pace. Which is slow.

Oh so fucking slow.

Pain’s Pained Choices

Chronic illnesses constantly ask the sufferer to make choices which inevitably seem like lose-lose. If you live with chronic illness, you know that well. If you don’t, then even at your most well-intentioned you live with ignorance as to what people like with on a daily basis. We are not brave, really. I certainly don’t feel brave today.

Today I woke up in pain. Ankylosing Spondylitis is a rare, potentially degenerative, unpredictable arthritic condition which affects primarily the spine but also other joints. It’s normal for me to wake up in pain, but today the levels were higher than usual and, as usual, for no discernible reason. Tight hamstrings, pain all the way through my back and neck. About 6/10 on my scale; on a normal person’s (apparently AS sufferers by necessity develop an unusually high tolerance for pain) it’s probably around 8/10. Apparently what I rank as north of 10/10 is worse than an especially painful childbirth.

I had planned to go to the gym today – I’ve put on weight and need to keep up the momentum on my new regime. Going to the gym will probably loosen me up a bit , but high pain brings with it a willpower melting emotional low. I lie in bed before the alarm sounds (pain always wakes me up) and wrestle with the trip to the gym. I eventually give in and doze fitfully through waves of pain and comfort myself that I’ve already been to the gym twice this week and it’s only Wednesday.

I slowly work my way into the day at my desk. The pain doesn’t go anywhere, and I’m tired. Pain is tiring, and I’m wrestling my mood. A while into the morning and it’s felt fairly productive. My concentration is all over the place, though. Pain does that. I have some top-up pain killers for days like this. If I take them, the pain will ebb somewhat and in theory I should be able to work more. However pain killers would mean more drowsiness on top of my tiredness. Stick or twist? I stick, for the time being. The rheumatologist has told me that topping up with the pain killers could affect my liver.

It would be good for me and the dogs out for a walk later, but the very thought of controlling them on the lead ratchets the pain still further. I put off the decision for now. I feel like I’ve lived a whole day of choices and pain and wrestling. I’m emotionally and physically shot. It’s only 12:30 p.m. Suddenly even the thought of what to have for lunch utterly overwhelms me.

Brave? Most certainly not.

I’m sick

I’m sick.

I’m sick of taking tablets and injecting myself.

I’m sick of doctor’s appointments.

I’m sick of pain.

I’m sick of being dependent.

I’m sick of being limited.

I’m sick of having ‘to be brave’ when in reality I’m not.

I’m sick of wondering if it will get better or not.

I’m sick of the ideas people have about my sickness when they know nothing about it.

I’m sick of looking at people with no major health problems and feeling jealous.

I’m sick and I am strong.

I’m sick and I accept that.

I’m sick of being lonely in crowds.

I’m sick and I laugh about it.

I’m sick of the well-meaning people who get it badly wrong.

I’m sick of explaining that there’s much I can do, actually.

I’m sick, and with that come many gifts and insights otherwise unavailable to me.

I’m sick and I need you.

I’m sick and I know what it does to me.

I’m sick and I get scared.

I’m sick and that changes what I care about.

I’m sick and I have perspective.

I’m sick and that leads me to great thankfulness.

I’m sick which means I am accustomed to waiting.

I’m sick and there are days I feel helpless.

I’m sick and that costs money.

I’m sick and that brings the judgements of others with it.

I’m sick which means I have lost much.

I’m sick and sometimes I don’t want to talk about it.

I’m sick and the reactions of others causes me concern.

I’m sick and sometimes I act as if I’m not.

I’m sick which means I grieve.

Inspired by 35 things you may not know about my invisible illness