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Living in a hostile environment with chronic illness

I actually wrote this blog post back in November - still autumn - but forgot about it so never reviewed and posted it. Here it is, a couple of months later.

I’ve been ill since 2011. I’ve been working on issues of chronic illness, disability and social security for all of that time. I say ‘working’; I’m lucky if I can manage two hours a day. I spend more time sleeping in a day (24-hour period) than I do ‘working’ in a week.


I have good sources of self-esteem. I have a first-class degree from the University of Cambridge in Natural Sciences. More importantly, as a Christian I have a strong confidence in my value as a creation of God; a human made in his image; loved and wanted by God. I believe this about all people.


Yet there is a recurrent rhetoric in parts of society (especially the richer and more influential parts) that people like me are a drain on society; that it is our ‘duty’ to go out and work as though the success and cohesion of society hangs on the efforts of our very sickest and most disabled people; that actually the problem lies with who I am as a person in terms of my morals, attitudes and beliefs which are all flawed.


This is exhausting to live with.


Despite all my sources of good self-esteem, I find that this negative rhetoric gets me down. It isn’t currently a very heavy weight, but it seems to be growing over time. Perhaps because every instance in which it occurs is an added little bit of weight; and over time this grows.


Even at church I’m not safe from them: when I was in tears last week from exhaustion, and explaining some of the burden of living amongst these attitudes, the lady to whom I was speaking responded ‘I do know lots of people like that though.’ I contemplated asking if she included me among them. I wish I had.


It might have sparked a fruitful conversation, if I had been able to sustain it without moving into either anger or a panic attack as a way to deal with the level of emotion it would have inevitably created in my body. I don’t want to get angry or anxious about these things, let alone whilst trying to converse rationally about them; I simply observe that it is a thing that happens. Most people, I find, get emotional when they feel challenged on a subject that is important to them. I wonder why it happens, as often it isn’t about a topic that has a major or direct impact on us. But on this topic, it is very personal and can have a major impact. When people buy into the narrative that people like me are scroungers, then it creates space for government to cause a lot of harm by refusing to give us the support that we need to live.


Every time I don’t challenge a negative, usually uninformed, stereotype, I feel that I’ve let my people down. I’ve let someone go away to continue to believe lies and mistruths about us. I’ve missed an opportunity to provide someone with education and explanation, letting them into some of the details and realities of the lives of the people they condemn. That’s hard to live with too. It’s still niggling in the back of my mind that I didn’t challenge the lady from last week; it’s still upsetting me that someone as apparently kind and helpful as her nevertheless buys into these judgments of others.


Maybe I can try by explaining some of my own life.


Right now I’m in pain. There’s a burning pain across my arms, legs, hands, and feet. This pain never goes away. There’s also a deep ache in the bones of my shins and lower arms that contributes to the nausea I’m feeling; this comes when I’m most tired. There’s a tension in my throat and sickness in my stomach, part of which stems from dealing with the negativity from other people about who I am and about the people I care about. My teeth are sore from being clenched; that’s because I’m trying to hold in this emotion in order to go about my daily life. It’s also from being cold because I can’t afford to heat my house to stay warm. Towards the end of the day I get more and more cold even though at the start of the day, at the same temperature, I was over-heating.


It is so important for my health that I can control every action I take; how I do it; when I do it; and to what standard I do it. A few months ago I had to stop taking part in a project that involved one 4-hour meeting once a month. Four hours was too long a time to have to be up and concentrating, and not be able to go and sleep for several hours. Every month was too frequent to be able to manage the fatigue and flare-up in illness symptoms that such a meeting caused when combined with all the less-predictable, ‘one-off’ but cumulative other events of life. More recently, I had to give up being a trustee at Church Action on Poverty, because quarterly meetings was too much. I’d like to be a member of the PCC at my church, but meetings are every two months, and experience – not false attitudes or beliefs – tells me that that is more than my body can handle.


I wear a heart-rate monitor. It’s just gone off to tell me that, despite the fact that all I’m doing is sitting at a computer typing, my heart-rate has gone over 120bpm and sustained that for several minutes. Sometimes when I’m sitting quietly, my heart-rate is so high that my wrist monitor thinks I’m exercising, so doesn’t bother to alert me to my heart-rate.


The monitor also calculates my ‘body battery’. This is scored from 5-100 (I don’t know why it doesn’t go down to 0). It took five days of rest and peace at my nana’s for my body to be able to ‘recharge’ overnight to a high of 34. Mostly, I’m pleased if I hit 25 after ten hours’ sleep; often, it’s not even 15. Again and again, I get the message “while sometimes unavoidable, too many consecutive days like this can exhaust you. Make sure you get enough sleep after days like this”. This is my daily life.


Today I woke up at 11am. I had to get up in order to be able to get out to the chemist and pick up my medication before it closed. I also needed to go to the shops, and I wanted to wash my hair because it’s been a week since my last shower and I like to leave Sunday as a day off. Showering doesn’t fit into that. I was back in bed by 2pm and didn’t get up again till nearly 5pm. But I’m still so tired that my eyes, or rather the part of my brain that co-ordinates visual input, aren’t working properly. I can’t quite see right; it’s not full-on double vision, but I’m not really sure where anything is in space; it’s not quite blurry, but nothing looks rights; it’s not colour-blindness, but the colours are off.  I’m reading what I’m typing as much by guess-work as by actual clarity of vision.


I struggle with loneliness and with lack of fun. Winter is cold and dark, and we’re not even in winter! The weather has been pretty persistently gloomy and wet since July, and there are months to go before we can expect nice weather again. It’s exhausting for me to cook, and if I do have to cook for myself I often end up too sick from exhaustion to want to eat. I force myself to eat, because I know that not eating a meal at the right time will leave me weak, shaky and dizzy; but I’m not enjoying the food. I long for something nice in my life; a respite from pain, exhaustion, loneliness, cold, weakness, weird vision. I don’t want a mere respite. I want a complete change. I want to not experience this suffering at all.


They say that when life gives you lemons, make lemonade. But without sugar and water, all you have is a bunch of lemons. I’d love to have such an abundance of necessities (water) and superfluity of luxuries (sugar) that the hardships of life are just an excuse to make a refreshing, flavoursome drink.


I want to convey to you how it is that you might see a sick or disabled person do an activity yet still be unfit for work. (My heart rate monitor has just gone off again.) I’m not sure that I can. I can’t really explain the reality of what I live. How every action is calculated to be the shortest route or least effort, to save much-needed energy for elsewhere. How balancing my physical and mental health is so hard it’s impossible. I need rest in order to maintain physical health, as the more tired I am the more depressed I am and I reach a point where I’m having panic attacks (probably not the right term) because my body is screaming at me in protest that it just Can’t Do This Any More.


But there’s stuff that I enjoy that brings satisfaction and fulfilment. Gardening is the big one for me. I feel closer to God when I am gardening; like this is the very first job that mankind ever had, and one we will have in eternity; nurturing the earth and bringing forth its beauty and bounty is who and how God made us to be. Sometimes I am so frustrated with my health and limitations that I go and garden for longer than I should; sometimes having started I really don’t want to stop. This always has major physical health impacts on me. I’m left shaky and wobbly, my knees buckling, my arms not wanting to hold anything. My body is inflamed and acts like it’s under a viral attack, mounting all the immune responses of swollen lymph glands and blocked sinuses and sore throats and vertigo. My pain levels rise to intolerable levels. The whole physical experience is so hard to bear with that I go out again the next day for more gardening because I need the physical movement and the endorphins to distract me from the pain.


When I do garden, I move very slowly. I’m taking more than twice as long as a healthy person. I’m sat or knelt on the floor, because I can’t stand (if the task requires standing, that will finish me off very quickly). I’m using hand-held tools, because I haven’t got the strength to make a spade or full-sized garden fork worth using.


I’m so tired at the moment that I don’t even want to garden. I got given money for buying plug plants at the end of August, and there were so many that it took quite a bit of work to get my garden ready to put them in. Because there was a time pressure – the young plants needed to get into the ground – I wasn’t able to spread the work out as I should, mix the harder tasks with easier ones, or just wait until I actually felt up to it. It still took several weeks. But because it was so hard – because doing things under time pressure rather than on a completely self-controlled basis means doing things at sub-optimal moments, and I don’t have the health to cope with that – it’s put me off doing any more, even three months later. I didn’t enjoy it as I should, and the enjoyment is the only thing that makes it worth the physical sacrifice.


When you see other people engage in activity that they say is bad for them, it will be for any one of a number of extremely important reasons: they don’t have any choice; they need the mental boost; they’re momentarily able and seizing the moment under their complete control. Sometimes people have caring duties that they can’t avoid, so they’re forced to ignore their pain and exhaustion and illness to provide for others. Sometimes we just need something to make life worth living, to get us through the days and weeks and months and years. Sometimes there’s been a rare confluence of circumstances, and right now in this moment our pain is a little less and our energy is a little more and the sun is out and our chores are done and we’re going to seize the moment.


None of this means we’re capable of meaningfully supporting ourselves through paid work. The reason I can garden when I can’t do other activity is because it is so completely under my control: when I do it; how I do it; where I do it; and to what standard. I can stop with zero pressure from an employer, or client, or finances saying I need to continue. I can get back to my home, because I never left my own property. I can ignore the necessary and do the fun and easy and satisfying. I can adjust to my moment-to-moment needs. I can sacrifice quality and quantity. The reason your neighbour with back pain is dancing in the street is the same: it’s adjustable; it’s controllable; it’s keeping her sane. Importantly, it’s momentary and occasional, not regular and ongoing.


You see us in our good moments, when everything together has meant we had some capacity. But you don’t see us in our bad moments, because that’s when we’re in bed, or pacing the floor in tears from the pain, or curled up sobbing because we just can’t cope anymore. That’s when we’re hidden away from view and you can’t see what’s going on. Even in the good moments, we’re dealing with pain and illness and other problems that you can’t see. They haven’t gone just because they’ve never been visible to your eyes.


The good moments – so few; so inadequate – are the only thing keeping us going through the bad moments, yet for them we face we the hostility and judgment and negativity of the public, of benefit assessors, of the government, of doctors. We face challenge and condemnation just for doing little things on an infrequent basis to stop us from giving up completely. And if, for some reason, we manage to do some of these things on two or three days in a week or even two weeks in a row before we have to go back to our beds and hibernate, then we face even more judgment. Just for living. Just for using our unpredictably available, frighteningly scarce, deeply precious capacity for something that actually has value and meaning other than to produce more unnecessary goods in a capitalistic world.


Well, I’m sorry I’m not a robot. I’m sorry that what I can and can’t do isn’t completely predictable. I’m sorry that I have emotional and social needs, not just physical ones. But that’s the way God made me. If you have a problem with that, take it up with him.


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