I found this old blogpost from April that I had forgotten to publish at the time. I had written it partly for myself, as a record of where I'm up to, and partly for others to get an understanding of what it can be like living with chronic illness. And also because sometimes, in the Christian world, we talk a lot about what it's like when we've come out the other side of a trial, and not so much of what it's like when we're still in the trial. I've also got a follow-up post that I want to write about God's love during difficult times.
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From April 2024
I’ve been struggling with worse health recently. I’m writing about it because it’s good for Christians to speak about their trials whilst still in the midst of them, not only when they’ve come out the other side.
It started in January, I think. For a long time – over four years – I’ve been helping my sister with her young children. I’ve been going over for two days a week, sacrificing my health and time and wellbeing to help my sister maintain hers. Despite my help, my sister is still white with exhaustion at the end of most days. So I haven’t felt like there’s been room for me to do less, unless other people around my sister found capacity to do more.
Between us, we’ve kept looking forward to easier times to come. Times when the overnight breastfeeding stops and the kids sleep through the night. Times when the kids don’t scream as much but actually learn to go to sleep without being held. Times when the kids learn to be slightly self-entertaining. Times when they start childminder, or increase their days at childminder, or go to school.
But then there’s also new challenges. Times when the kid learns to roll or crawl, so no longer stays in the place they’re put. Times when the kid discovers their sense of will, and is no longer as compliant with what’s on offer. Times when the kid can climb out of the cot, so no longer stays put and goes to sleep, but instead keeps themselves awake for two hours of their much-needed sleep-time. Times when the kid brings home bug after nasty bug from childminder, wiping out not only their fragile self-control but the remaining health of their mother and aunt. Times when the kid starts school so the child-free day ends 1.5hours sooner, and school holidays become a problem.
I think it has been getting slightly easier as the children get older. But my health has also been going slightly downhill the whole time, at a faster pace than the childcare duties get easier. So in January, 15 months into the wettest 18 months on record, I finally came to the conclusion that my continuing hopes that things would ease up and I would get a sense of life back were not going to be fulfilled. And with that, all my capacity to keep going disappeared.
It started small. The highlight of my week is going to church in the evening on Sunday. I noticed that it was getting particularly hard for me to want to leave at the end of the evening. On a couple of occasions, I asked the rector to pray with me before I left, and that helped me find the peace and strength to go back home.
I also started using a food club again. I need to be careful to conserve my money, as the government Cost of Living payments are not continuing this year, and neither is the support for energy costs. I don’t like using the food club. I hate how it makes me feel; like one of the dregs of society, fit for nothing better than being the dustbin for the middle classes’ unwanted food. It doesn’t help that the food is so often unsuitable, with lots of sugar and processed foods that make my pain and general inflammation worse. Oftentimes there’ll be multiple packs of the same item, possibly all labelled Use By that day. And it’s hard to think of the more atypical, expensive items as ‘treats’ when I’ve got nothing to sensibly eat with them. I don’t think that using the food club has helped my mood.
My mood and health continued to get worse. I’d always found it challenging to deal with my nieces when they weren’t behaving well. I wanted to improve on that; to have more empathy for their emotions and patience during their screams. But the control I was placing on myself was so hard, it was breaking me. I have learned how to manage better; how to set the children up for success and to predict their expectations so that, if I know those expectations won’t be met, I can help the child adjust. But I was getting more and more physically exhausted, as the kids brought home yet another major bug that laid me out for weeks, and then brought home another bug before I’d properly recovered from the first one. Along with the exhaustion, my pain was getting worse and my mood was dropping. It always drops when I’m more ill; I know that, and I know that the remedy is to be patient and wait until I improve again. But with the repeated bugs brought home by the kids and the loss of belief that things ever would materially get easier, I no longer had confidence that the ‘improved’ times – my baseline health – would actually outweigh the many times and various issues that cause flare-ups.
It was still winter, as well, and as it had also felt like autumn had started on 1st July, to still be stuck in February with miserable weather was just too much. Now it’s ¾ the way through April, and the weather is still largely grey and cool. I’m delighted that my garden has reached the point of having a reasonable flower show from January onwards, but it doesn’t combat the lack of sun and warmth. With climate change, the seasons seem to be breaking down, and I don’t feel I can handle the insufficiency of sun. It’s all very well to promise that spring always comes after winter, but what if winter is long and hard every year, and spring is late and weak, and summer is a washout, and then autumn comes before you even begin to be ready? I might handle four months of winter if I had eight months of sun; I can’t handle ten months of greyness for just two months of sun.
I had been looking forward for a long time to being able to get back into horse-riding. I thought I might be able to last September, but it turned out I didn’t have the energy. Then I thought maybe come January I’d be able to, as my youngest niece started a third day of childcare each week, but I still didn’t have the energy. I’d been promising myself the reward of getting back into riding, but it didn’t happen. The effort of catching and tacking up and taking the horse back to the field afterwards outweighed the 15 minutes of plodding around an arena that I could manage.
And still my health got worse. My pain increased; I was pacing the floor in tears, or standing outside in the rain out of some weird sense that maybe the cold and the wet would distract me from wanting to tear my skin off and pull out my fingernails. My first GP appointment suggested I make sure I don’t eat processed food, and to increase my exercise, because apparently – and contrary to over a decade of personal experience – any increase in pain would only be temporary and then my pain would improve. The second one still refused any fast-acting painkillers, but increased my amitriptyline – a drug that takes six weeks to work on pain, according to the NHS website; and which caused major sedative side-effects. It was only at my third appointment, and third GP (no continuity of care here), that I finally got some oramorph, but only because I said I wouldn’t want (though I might need) to use it more than twice a week. I used it three times in three days, and only stopped on the fourth because I was pretty sure the GP wouldn’t prescribe more if he/she thought I’d used more than I should.
By this point I’d paid for some private therapy. My therapist got me doing some relaxation exercises, which weirdly made my pain worse, perhaps because relaxing my muscles meant my brain was no longer distracted from the pain by the messages of muscle tension, so then the pain messages could flood my brain. It also noticeably slowed me down; it seems like I’ve been running on stress for a long time, and without it I move even slower than my already-slow pace. Perhaps part of my ongoing exhaustion is a reduction in stress hormones, so I no longer have the physiological response that previously gave me at least a modicum of energy.
I do think the therapist helped. Perhaps partly because it was good to have a weekly session to talk about how I was doing. She also helped me to get back into things like playing the piano, which I enjoy, but I forget that I enjoy it because it takes a bit of effort to get into it.
And then I discovered that if I played enough piano to boost my mood, it was also enough piano to physically exhaust me. So having psyched myself up to start playing in the first place, I then had to have enough self-control to stop just at the point where I’m starting to enjoy it. And that’s really rubbish too.
I’m also trying to make sure I get outside whenever the sun is out, to enjoy some light gardening or to just read a book. But the sun isn’t actually out very much. And when it is, I might also need to sleep, so I have to miss the sun. The forecast for the next eight days has two days of mixed sun and clouds, one day of clouds, and five days of rain. The temperature isn’t expected to get above 12o, even though by the end of April we ought to be able to averaging 15-16o and even some afternoons at or above 21o.
I’m just very weary, I think. Every part of my life is hard. Just getting out of bed or up from a chair is hard, because of how weak my leg muscles feel. They don’t want to support me. And my body remembers that, and reminds me of it, and makes me concerned for any activity.
I can’t keep being emotional about it. I haven’t got the energy for it. I think I’m maybe a bit out-of-touch with my emotions, because I’ve had to ignore them for so long in order to just get through. Then I think that maybe I should try to process and deal with these emotions, and it leaves me so broken that I can’t follow through. So I pick myself up again and wrap myself up and carry on just enduring. But I’ve run out of strength for this, especially when people ask how I am, and I’m tired both of pretending to be okay and of talking about not being okay.
I’m not sure where God is in this. Previously, I’ve struggled with why he’s let me lose so much. But I dealt with that. I’ve learnt to live with the life that I’ve got and appreciate the good parts, albeit my life with illness seems somewhat more restricted than most people’s outside-of-work life. But I do get to go outside when it’s sunny (unless I need to sleep through it), and I do have a steady-ish income and a family to help me when that income is inadequate, and I like my little flat and its gardens and proximity to the park.
What I’m struggling with is really letting myself feel that God loves me. I know it intellectually, but I find it hard emotionally to grasp a love that allows this much pain in the world. If it were me, I think I wouldn’t have created humanity at all. Clearly, that view is wrong, because it’s not the view that God came to. But it’s where I’m at.
I am trying to be open with God and have good prayer time with him. I am improving on this. But I run out of capacity for emotion, and find myself shutting down and withdrawing again as the mechanism for getting through life. It’s just such an effort still that it’s not really working for me anymore. But nothing else is working any better, at least not without outside support.
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