Tag Archives: health

Getting into hot water

For many people in the UK, this winter is going to raise enormous challenges and require difficult, miserable choices about priorities. There are no good answers here. There are no workarounds for not being able to afford to live, and it is appalling that anyone should be facing this, but here we are. 

Hot water is one of those things most of us take for granted. My grandmother had things to say about the arrival of hot running water in the home, but most of us alive now have grown up with it being normal. Heating water costs money.

Hot water is better for hygiene than cold water, so if people cut back on hot water we can expect more illness and food poisoning. As is always the way of it, people with physical vulnerabilities will be hardest hit.

Soaking in hot water offers pain relief to many. The cost of not being able to have a long, hot shower or a decent soak in a bath will be high for some of us. Washing can also help a lot with mental health, while not feeling clean will undermine it.

Hot drinks do a lot to comfort people. To the point whereby heating water is strongly recommended in survival situations because it has such a massive impact on morale and your ability to keep going.

When you are cold already, or ill, or in pain then cold water just takes more out of you. Washing yourself or your stuff in cold water will add to your exhaustion and discomfort. Most of us are not equipped to heat water by other means.

As a society we have – I think – gone too far with the washing of bodies and clothes. There would be environmental benefits to cutting back on that a bit. However, this isn’t the way to do it. Forcing people not to be able to use resources in the way they need to is cruel. We should be scaling back thoughtfully and on our own terms. We should all be able to afford to be warm enough.


Being diseased

I’ve made some considerable effort not to get covid – I wear masks when I can (I get panic attacks so sometimes I can’t wear them). I’m vaccinated. I stay out of crowds and I don’t do much indoor stuff with people. But here we are, and it is in me and has been in me for a few days.

At this point there are no legal requirements for me to behave in any specific way. There is only advice, like working from home if I can. Little wonder that I have it. Part of the problem here is that we have a fundamentally broken system when it comes to work. We expect people to go to work when they are ill – spreading diseases of all kinds, and slowing recovery. Working when ill is horrible. The person who can just take a few days off and rest will recover faster. But, a lot of workplaces will punish you for doing that. Most people can’t afford to be unpaid or to lose their jobs over taking care of their health.

I feel grim, but not as grim as other things have made me feel in recent years. I’m very tired, but I was very tired anyway so it’s hard to know if this is new and extra very tired, or pre-existing very tired. My concentration is rubbish, but it’s mostly been rubbish this year.

I’m looking at how body stressors add to my experiences of panic. I’m starting to think that my panic experiences aren’t just silly things happening in my head for no reason, and that panic might be what my body does when it starts to feel dangerously under-resourced. I’m usually the first person to assume I’m making a fuss and taking a thing far too seriously, but here I am with covid and it is by no means the most ill I have felt this year. 

What if the panic isn’t an over-reaction? What if the panic isn’t something I need to learn how to control, but a genuine and reasonable response to hazards? What if the problem is one of being under-resourced, not one of just making a fuss? Everything I’ve encountered on the mental health side assumes that panic is an over-reaction, and that the problem is the panicking, not whatever caused it. Last week I had panic attacks caused by being in more body pain than I could take. Maybe the fact of the panicking isn’t the problem here. Maybe I’m not just making a fuss over nothing, and maybe that’s even relevant when the things going on are more about mental health as well.


Resting Hard

Over the years I’ve had many rounds of getting ill and/or exhausted, being obliged to rest and then having to try and rebuild strength and stamina. This spring has already been really tough, with the impact of heavy bleeding leaving me anaemic. I’ve spent a lot more time horizontal than I wanted to, and of course it has cost me in strength and stamina.

In the past, when I’ve got to the rebuild stage, I’ve focused on the physical activity I could add to the mix. I have an indoors trampoline, which is great for a number of things. I have small weights, and resistance bands, so even if the weather isn’t good enough for walking, I could still exercise. Before I messed up my previously hypermobile shoulders, I used to swim as well. I did Tai Chi. I danced.  That I’m not very fit, or strong, or slender is not from lack of trying – and I mention this because so many people assume that body shape is just about your lifestyle choices and really it isn’t.

This time, I’m going to try something different. I will of course get back to all the active things I can do, and I’ll try to do at least something every day. However, I am also going to try resting hard. I have been doing all sorts of things to try and improve my sleeping – with some success. I’m working out what kinds of things are good for me as down time – reading and crafting are particularly important. Also cat snuggles. I’m putting more of that into my day. 

It doesn’t work to try and go flat out all the time whenever I’m well enough to get away with it. Sooner or later, I get ill. That may be going to happen anyway, but I think I can be better resourced if I plan more rest time into my life.

All too often, activity is framed as an unequivocally good thing while rest is treated as lazy, indulgent and unproductive. I’m going to change my language use. I’m going to rest hard. I’m going to have rest plans for building up my health. I’m going to be highly motivated to rest regularly. Resting gives me more resources, and if I pair it with things that feed my brain, I am ultimately making myself into a more functional and probably more productive person anyway. 

Exhaustion and burnout are hardly efficient, nor do they result in good thinking, wise choices and quality output. Working people to exhaustion isn’t about productivity at all, it’s about subjugation. It’s time to reject that relentless work hard, play hard model. Work wisely, play happily, rest hard.


Learning to be less efficient

One of my big personal projects at the moment is that I’m trying to learn to be less efficient. I’ve got a significant attention span – I can do things with my brain for longer than is good for my body, and I need to tackle that. It isn’t good for my hands if I colour for a couple of hours flat out, or type for extended periods.

Just because I can doesn’t mean I should. 

Years of practical and economic pressure haven’t helped with this. Taking breaks and being gentle with myself has, all too often, felt like a luxury I couldn’t afford. It’s not like that at the moment. Rest should never seem like a luxury. Basic self care to avoid pain and damage is not a luxury. I am not a machine, but I’m not very good at treating myself like a person.

So I’m trying to figure out how to slow down. How to take more breaks, and be gentler. It’s an interesting process not least because it means I have to be alert to what my brain is doing while I’m working. I’m obsessive, and I can fall into the rhythm of a thing and get stuck there, and some bits of my brain really like that and find it soothing. It takes a huge toll on my body if I’m not careful – too much strain on my hands and not enough movement elsewhere.

There will be a balance to find. Enough rhythm in what I do to sooth my brain. Enough movement for my whole body to allow me to be reasonably well. Enough rest for my hands to avoid hurting or damaging them.


Self-Diagnosis

The internet makes it very easy for a person to try and diagnose their own conditions. There are obvious risks – not having the tools, skills or knowledge to do that well, being misled by dodgy information on sites that are just trying to sell you stuff, not being honest with yourself, or wanting an explanation that isn’t about your own poor judgement.

It does have its uses. I visit the NHS website a lot. It’s helped me decide how to act, whether to call an ambulance, and it’s helped me manage a number of things on my own without needing help. For example, how to deal with heart palpitations, and hives and how to sort out mouth ulcers. It’s a good site, and by using it I don’t add pressure to the system. At this level, many of us can and should use the internet first.

There are many very good reasons not to seek diagnosis, and where you are in the world will likely impact on this. Not being able to access health care. Not being able to afford treatment, fear of impact on your job, or insurance. Fear of stigma. Belonging to a group with historical issues around diagnosis – eg autistic women. No treatment existing. Diagnosis likely to require resources you don’t have – money, ability to travel, time, energy, effort, emotion. Not being able to take time off work to sort things out. Having anxieties or triggers that make it too difficult. 

I’ve been going round this for some years now. There is a thing I appear to have where the evidence is straightforward but the diagnosis would be hard to get because it’s not a common problem so isn’t widely known. There are no other conditions that work the same way so there’s nothing to get crossed off the list although there could be other explanations for some of the issues but there is also no way to tell. There’s no treatment available and as I don’t want to stop working, not a lot to gain. But it might be useful for the longer term to establish what this is in case of future complications. I’m thinking about it.

My current thinking goes like this. If self diagnosis is your only realistic option you just have to make the best of things and that’s woefully unfair. The critical thing if you are going it alone isn’t the label you give yourself, but what it gives you in terms of management. If what you learn from the label enables you to be healthier and happier and more able to function, that’s great. Being able to manage better is a good outcome. If you have no means to help yourself based on this knowledge, you may not be right about what’s going on.

This is always going to be a gamble. There are always risks. There are always things a trained medical person might pick up that the lay person would miss. But there’s also the other side of it, that the person living with a thing can be much more aware of how that works than someone with only theoretical knowledge. Tread carefully.

It’s also possible to have a condition that hasn’t been named, or studied, or for which there are no diagnostic tools and no remedies. Having an ailment before that ailment officially exists is always going to be a nightmare.


Have you tried taking painkillers?

Last week I was talking to a friend about some of the things I am wrangling with. Said friend came back and acknowledged that they had no idea what they’d do in that situation. It was, in many ways, a really good moment.

I tend to be fairly focused on problem solving, and failing that on figuring out how to keep going and how to get through things. Some of the things I’m dealing with cannot be fixed, only managed and lived with. So on one hand, advice for how to fix things is great and I actively seek that, but people simply acknowledging that they don’t know is also great and saves me a lot of time and energy.

Like most people struggling with various long term issues, I get offered advice from people who have little or no experience of the problems in question. People who think everything can be fixed with mindfulness, yoga, time in nature, a bit of time off… and while that’s undoubtedly well meant it’s also not even slightly helpful. If you aren’t dealing with the same issues as someone, what you can think of in five minutes is really unlikely to be something we haven’t thought of. We’ve probably already tried. If it was as easy to fix as these fixes suggest, we wouldn’t even be in that much trouble in the first place.

What’s even worse than the suggestions from people who don’t know, is when they insist on doubling down on their solutions and not taking no for an answer. One of the most commonly occurring examples of this is being asked to consider antidepressants if you are talking about being depressed. Now, I guarantee you anyone who has got as far as knowing they are depressed has already considered antidepressants. They may have tried it and found that either it didn’t help, or that the side effects were unbearable. They may not fancy the risk around an intervention that can actually increase your suicidal feelings. Antidepressants really help some people, but not everyone. For the person who isn’t a doctor and has no experience of serious depression, they can seem like a magic bullet, but they aren’t.

Similar things happen around diet, exercise, supplements… part of this comes from the toxic idea that illness is basically the consequence of not trying hard enough and if you tried harder you’d get better. This is nasty stuff, fundamentally untrue for many conditions, and can be harmful. I think part of it comes from wanting to believe that if they try hard enough, they won’t get sick themselves.

I think there’s also an issue of people who have had mild run-ins with a condition and don’t realise they had a mild dose. I see this a lot around depression. If you can cure your depression with a bit of mindfulness and a nice bath, then you weren’t seriously depressed to begin with and your interventions won’t fix the person whose mind is being crushed into dysfunction by a much more dangerous form of the condition.

It’s ok not to know what to do. It’s ok not to have answers. It can be helpful just to listen and express care for the person who is suffering, or to offer to be there if they figure out anything that would help. Often it’s relevant to offer practical interventions. The friend in question who was so helpful last week didn’t suggest I should go for a walk, but took me for a walk somewhere I could not otherwise go, listened to me, encouraged me, and was kind. That was genuinely helpful.


Health crisis, mental health crisis

I’ve been seeing a lot of comments from medical professionals all around the world – that they can’t cope emotionally or psychologically with what’s being demanded of them.

We forget at our peril that humans are finite creatures. No one can work all the hours there are, indefinitely, without consequences. We’ve asked our doctors and nurses to hold the front line against a disease that kills, and that is more likely to kill you if you get a high exposure to it. Many of them have died. We’ve asked them to work without the proper protective equipment – especially in the UK. Also in the UK we’ve declined to pay them properly so that nurses can end up at food banks.

People become mentally ill when too much is asked of them for too long. Even people who expect their jobs to involve death and distress can only handle a finite amount of that. 

Exhaustion, burn out, overwhelming fear, and unbearable pressure can have an array of impacts on a person. It becomes harder to make yourself move or to act. Decision making becomes harder, even impossible. Every situation becomes overwhelming and impossible. Clearly it’s not possible to keep doing a job where you need to think quickly and act decisively to save lives if you can barely function. And yet that’s exactly what we’re expecting people to do.

At the beginning of the pandemic we were talking about slowing the curve, because there are only so many beds and ventilators out there, and if we have too fast a spread we’ll overload the system and people will die. If we overload people, that also matters.

All too often,mental health is treated either as a luxury, or as a problem for people who are just weak to begin with. Everyone has a breaking point. There is only so much stress, pressure, misery and exhaustion that any one human can take. We’re approaching the two year mark with covid and it’s amazing really that so many people in the medical profession have held up for so long in face of all this.

But they can’t do it forever. 

We need to recognise the humanity of our medical professionals, and that we have asked too much, and we need to do what we can not to end up in hospital. We’re all in this together, we are all impacted by each other’s individual choices, but we’re asking one group of people to bear the brunt of the consequences. And then, ill and unvaccinated, the most selfish amongst us show at the hospital expecting to be helped by the very people they’ve accused of genocide, sometimes while shouting abuse and demanding miracles. 

I don’t have any large scale answers to this, but as individuals we can at least try not to be part of the problem, and to be kind to the people we hope will save our lives.


Working nine ‘till five

During my week in the gallery, I was getting up at half past seven, doing half an hour or so of computer work, walking to the gallery at 9, being there until 5 and then walking home. I found it utterly exhausting. It didn’t help that I worked nine days without a day off, which shouldn’t be normal for people with regular day jobs.

I’m used to being able to do bits and pieces of domestic work around my other work. Where other people might get a tea break or a water cooler moment, I might do the laundry or get the washing up. It means that when I end work for the day normally, I’ve done whatever I’m doing on the domestic front as well as the economic front. Coming home in the evening with all of that yet to do is emotionally wearing as well as physically tiring.

I’m a big fan of walking and cycling to work. I acknowledge that it is hard to do this, especially in bad weather or when you  are already tired. Many of the things that are more sustainable – cooking from scratch, buying locally sourced everythings… take time and energy that I wouldn’t have if I worked this way every day. I already knew that many aspects of conventional work aren’t easily combined with sustainable life choices, or with healthy choices for personal wellbeing. There’s a lot of difference between knowing something as a theory, and living it for a while.

I’m a big believer in making what personal changes you can, but I acknowledge that not everyone gets much control over how and when and where they work. Not everyone can go self employed, or can wrangle to work from home. Personal shifts alone won’t deal with things that are ingrained in our culture.

I also note that I wasn’t fantastically useful for much of that time. I’ve done a lot of public facing, events, retail, front of house kind of work – which can be sporadic – quiet while you’re waiting for people to show up, and intense when they do. But in terms of quality of work done for time spent… I wasn’t great. Compared to what I get done in a few hours working quietly at home, I wasn’t very productive. In some ways that’s the nature of this kind of work. But, how many people are turning up to put in the hours every day, and not paid based on what they do? How much time, life and energy are squandered while people show up for the required hours?

One of the great things about being self employed is that most of the time, it’s about getting the job done, and not about how long it takes. Unless your job is primarily about being available to help other people in some way, then time spent is meaningless for most work. How many workplaces will let you go home when you’ve done what needed doing? How many employers will reward speed and efficiency by simply expecting you to do more?

There’s only so much you can do as an individual to change any of this. I feel strongly that we need to be talking a lot more about why we work, and how we work, what we reward, and what we expect from each other.


Adapting to the new normal

One of the hardest things about being longer term ill, is adapting to the new limitations. It may feel like giving up. It may seem like you’re accepting that some things are gone forever, and that can hurt. But the thing about illness is that it won’t be cowed, or impressed by you fighting to hold onto your old life. It may well bite your arse for that. 

I’m wary of positivity, as it can do far more harm than good. But, when it comes to adapting, a somewhat positive outlook can help. Look at what you can keep, rather than what you have to let go. See your adaptations as ways of safeguarding your health and maximising your options for the future. You may have losses to grieve, but at the same time focus as much as you can on what is still possible, and make the best of it. Adapting to limitations is not a happy process, but trying to find the positives can help a lot with coping. Fending off despair is also important, because that just robs you of more options and gives nothing in return.

The last ten years or so have not been a smooth decline for me. I can’t walk as far as I used to – that’s been a dramatic shift in the last year. Shoulder damage means I can’t swim, or lift much. I am however sleeping better and this means late nights take less of a toll so I have more scope for events and a social life than I used to have. 

Having got the right kit in place, the massive problems my poor circulation used to cause are now minor problems. I’m in a lot less pain as a consequence. Using hand supports during work, I get less pain and inflammation. I’ve had to give up on musical instruments, but I can still write, sew, knit, colour things – I’ve kept more than I’ve lost. 

I rest more. This means I work more efficiently – I may be getting more done and more effectively at this point than I was five or ten years ago, because I think more about how to use my energy and I take more breaks. This has also helped with my mental health. Everything I’ve done to better handle my bodily limitations has also improved my mental health, or at least stopped it becoming any worse. 

The last year or so has been really tough, and I’ve done a lot of trying to understand why. Some of this I might be able to fix, or at least manage better. Some of it might be a new normal – I don’t know yet. What I do know is that the best thing I can do is figure out how to live within my limits. The more well I can be, the more options I have. Pushing to hold on to what I used to do is likely to make me more ill and take even more from me than I might otherwise lose. So, I have a constant fettling process about what I eat, how and when I rest, how and when I move, how I support my sleep… 

(Also, this isn’t a request for advice. All of the specific details about what I’m dealing with are deliberately absent from this post. If you don’t know me well enough to know about the various things I am dealing with, you don’t know me well enough to have much of a shot at offering unsolicited advice. Thank you)


Not everything can be fixed

Small things can be fixed. Small injuries can heal perfectly. Small injustices can be put behind us. Not everything can be healed. There are wounds that come to define us, experiences that shape who we are, illnesses that don’t go away and griefs that cannot, honourably be ‘got over’.

There is a big industry around the idea of perfect wellness. There’s a lot of toxic positivity out there that will tell you it’s not ok to be carrying something, or defined by your wounds, or still grieving. Not everything can be fixed, and it’s important to push back against the toxic positivity.

The idea of perfection can be a barrier to doing whatever healing might be possible. It’s better to learn how to carry grief. If all you hear is a message about getting over it, you might not be able to find the tools that allow you to move forwards, with your grief. Some losses define us. Some losses are too big and too important to ever let go of or move on from. But it is possible to make peace with the grief you are going to carry.

It’s much the same with the kind of illness that won’t heal. There is peace to be made. Compromises can be found, adjustments made. Sometimes it’s about learning how to make the best of the situation you’re now in. The notion of total healing can be a massive distraction from doing the things that would actually help.

It is better to put down the idea that everything should be fixed. It’s not a helpful idea. It can burden us with a quest for solutions that aren’t out there, or leave us feeling inadequate. Genuine healing can be much more about adapting and managing. Being able to cope is a good place to be. Doing the best yolu can with what you’ve got is the only measure of success worth caring about. Getting the hep you need to continue on your own terms is so much more valuable than being held to impossible standards of wholeness.

Some things can only be lived with. Anyone who tells you otherwise is probably trying to sell you some expensive bullshit intervention, or is simply in denial about their own potential fragility.