Tales from times of exhaustion #2 – how a day might go

Food is my focus. To eat at least 2 good meals throughout the day. But this takes a lot of planning. No energy for spontaneous creative cooking or hours of shopping and preparations. Also I have to cook things I will actually eat which can be tricky as my desire for food is diminished and changeable.

I don’t want to eat junk food – it’s tempting. Quick and comforting. But I know it will prolong my exhaustion if not make it worse. I do allow myself to have treats like ice-cream because it helps my mood. Overall I try to get vegetables and protein into my body.

Sometimes I prepare breakfast in the evening. Sometimes it works out that Rufus makes porridge and I’m up early enough to have some too. Then I don’t have to worry about eating for a couple of hours. If neither of those work out I’m likely not to eat till midday or early afternoon.

In order to have a proper evening meal I cook in intervals. Sometimes I start in the morning. I do some preparations for 20 min. Then a couple of hours later I’ll get a bit more done. My aim is to only have to do 20-30 min in the evening before we eat. On a bad day I leave the cooking to Rufus.

I try to slowly stop or lower my intake stuff I know can be straining for my body to deal with. Caffeine, sugar and dairy. One thing at a time. Caffeine is usually the easiest. Sugar and dairy I just try to minimised as much as possible without going cold turkey.

I loose my sense of time. I’ll get up between 8 and 9, figure out food in between rests and suddenly it’ll be afternoon. I try and remember if there is anything urgent I need to do or messages I need to respond to. I might get 1 or 2 things done – like a wash or some writing – before it’s time to do the last preparations for dinner. We eat around 7.30pm or 8pm and then I rest again.

Getting outside is tricky – too much going on, noises, people and bright light. It’s easier if I go with Rufus or a friend or if I have a task like getting cream from the corner shop or checking on the plants in the garden. I try and get out at least once doesn’t matter if it’s just 10 min. On a bad day I dont get out at all and I don’t always realise.

Any energy I have after sorting out food I spend on tidying and washing up. External chaos causes me anxiety and panicky feelings which are draining so I try to keep things around me as non-stimulating as possible.

Any rest I have usually means half lying down on the sofa and watching something. Something just entertaining enough to keep my mind from thinking and simple enough so I don’t need to really pay attention to follow it. I need to be in a state somewhere between distraction and low level stimulation. Too much stimulation and I have a melt down. Too distracted and I forget too many things and have a melt down.

When I’ve been still for a while it hurts like hell to get moving again. So it’s tempting to stay still. But I know its just a downward spiral of further exhaustion and pain. Too much rest creates problems too.

Figuring out what to do and how much to do is a constant puzzle. I have to try and trust my experience of having gone through this before. Because a lot of the time there is no instant effect of anything I do. No relief, no sign that it is helpful. So it’s hard to stick with what is sensible and what I believe works. Daydreams of drug induced highs or oblivion starts coming along. Dealing with physical exhaustion is as much about looking after my thoughts and feelings as it is about looking after my body.

Tales from times of exhaustion #1 – the initial readjusting

I wish my body collapsing on me would be as intriguing as this house collapsing. But it’s really not.

 

It’s been coming and it’s understandable but it’s still frustrating and depressing. I had hoped to catch it in time and I slowed down but no luck.
I am now trying to settle in to the state of things. Readjust to the current level of tiredness, pain and cognitive limitations.
My days more or less consist of thinking of something I need to do and then forgetting it. This include basic things like eating, drinking, getting dressed or going for a pee… Then remembering it again, try and decide if I am able to do it. I usually have a time frame of 20 min of activity before I will have to rest for X amount of time…
Am still managing to get out of bed every morning which is good. Mainly because the pain means I can’t keep lying down. Silver linings…
I am not able to get outside much which makes me feel sad. Having to do as little as possible and yet just enough to keep me from getting caught in unhelpful thoughts. My main mantra is ‘you’re exhausted and that is understandable’ – cause dealing with my body collapsing also means dealing with all kinds of internalised judgemental crap that I’ve been socialised to think.
Cooking and eating are my main priorities as well as keeping my environment neat so that it doesn’t cause anxiety, overstimulation and panicky episodes.
I am having to rethink my plans for the next months. Simplify, slow down and be sensible. And worst of all ask for help with stuff and rely more on Rufus than I’m comfortable with.
Hopefully this first week will be the worst – I know I can make a difference if I just focus on food, rest and manageable movement and I’ll eventually get out of this absolutely awful sense of being caught in sand. Like when you are dreaming and you want to speak, open your eyes or move and you just can’t no matter how hard you try. Same sense of heavyness and confusion.
Then I’ll just have to wait and see how long it takes to recover to a more acceptable level of limitations…

Migraines

Post migraine exhaustion…
Been trying to finish this tiny portion of apple-cinnamon-porridge for the past hour or more… Some migraines leave my body in a right state and it takes a couple of days to recover. I feel hungry but too nauseous to eat. I know that eating is the only way to stabilise my body so I keep trying.

I get different kinds of headaches. Having had headaches since childhood Ive learned to distinguish the different types and sometimes that helps me look after them better.

I also get different kinds of migraines. I get hormone related ones which are pretty awful but usually I can do some stuff. They feel like my liver has decided to stop working and my body is full of toxins and the migraine is a kind of rebooting of my body.
Then I get migraines from eating stuff I shouldn’t have though it’s not always easy to predict if I’ll get one or not… They feel like my stomach is shouting at the rest of my body and my gut stops working so everything else stops working too. It literally feels like the pain in my head has travelled from my stomach up along my spine and into my head. These ones often pass if I manage to get some salt and sugar and stabilising foods like butternut squash, potatoes and sweet potatoes. (That kind of food can also help with the hormonal migraines I find)
Then there are tension migraines that usually start as a headache and develop into a really bad headache with migraine like features.
And finally there are the m*****f***** evil migraines. The superior migraine of migraines. The ones where there is nothing I can do. Nothing brings relief. And I just have to wait and wait and wait. Time stops existing because there is only this moment of pain and then the next one. And the next one… And I whine and I moan because I don’t know what to do. But that doesn’t change anything and it’s too loud anyway so I stop. And even though I’m in a dark quiet room, everything is too much. My own breathing is too much. The sensations of my body is too much. Movements make me throw up. The throwing up is not like normal throwing up. It’s like my body goes into spasms and I can barely breathe. My body will keep trying to throw up long after it’s emptied itself. These migraines seems to be like a trauma response. If I’ve been doing too much and gotten too intensely overstimulated. It’s my body’s way of stopping me and screaming at me. At times it can feel like my body is incredible furious with me and that there is nothing it can do but go into migraine mode.

With some of the other migraines it’s a relief once they start receiding. But with this one the pain goes away ever so slowly and I continue to feel weak and nauseated. I also feel like it could get worse again if I do too much so recovering is a slow and careful process.

So I have to be patient and I try to accept that I have to slow down for a couple of days. Not easy, though. Things I need to do. Things I want to do.

In the aftermath of a migraine I try to appreciate the migraine as a teacher. It tells me about my limits (however annoying it is to become aware of limitations) and it teaches me patience. It also helps me refocus and think about what my priorities are – what is most important for me, here and now. It also teaches me to have a very nuanced perspective on pain and appreciate times when I am in less pain.

The ability to wait

There isn’t much fun about waiting… Though some people say that half the experience is anticipating it and preparing for it. I guess what I am talking about is the aimless waiting, waiting for something to change or shift or waiting for things outside of your control to come together. Some people talk about precious time being wasted when we wait – like waiting for the bus or for the washing machine to finish so you can take out the clothes in order to get on with the day.

I think the virtue of waiting is underestimated. There are some valuable skills in waiting. When you wait you have to surrender your idea of having control over things, you have to be with your restlessness and boredom and face your powerlessness. And I am not sure we do these things enough.

There seem to be a lot of energy in society spent on proving one is in control – that one is productive and efficient – and surrounding oneself with an air of busyness. Waiting and busyness don’t go well together. I think a lot of us feel urged to distract ourselves instead of waiting. Or we feel like we have to fill the time with something useful.

I think we tend to associate waiting with being idle. And being idle has got a bad name:

 

No wonder our adult parts – the conscientious, image-oriented and anxious selves – feel uncomfortable when we have to spend time doing nothing.

I also think many of us associate waiting with being told off as a child for being too eager, too excited and too demanding. Waiting was a punishment or a frustrating thing we had to do to get what we wanted.  How many of us has experienced an adult telling us to do this annoying waiting-thing and then sit down with us to figure out how to do it and what it’s like.

No wonder our inner children – the excited, impulsive and eager parts of us – feel like waiting is boring and an awful state of lonely restlessness.

So if waiting is more than being idle or being forced to delay gratification, what is it then?

As I get older people feed back to me how they appreciate my ability to wait, my patience. I wait for a mood to pass, I wait for the energy to shift in a difficult situation, I wait for the next wave of conversation to come (rather than create it), I wait for life to get less busy so friends and I can find time for each other, I wait for time to heal the cracks in suffering relationships, I wait for opportunities to come along. I have practised a lot of waiting in my life. Doesn’t mean I can always do it but I find that its a useful skill to have.

Waiting is not a passive state. Waiting, for me, is an attentive state; a caring, listening state. Listening in to my body, listening in to life, listening in to a situation. And trusting. Trusting that things change even if I don’t actively interfere. Even if I don’t ‘do’.

Because life is bigger than me and there is so much I do not know, so much I do not understand. I am seldom capable of confidently taking action because it is impossible for me to know what the ‘right thing’ or most appropriate thing to do, is. So I wait. And in my experience inevitably the thing to do comes to me. Like in some strange dance with life, the next step appears on the ground under me. And because I was attentively waiting I noticed it. Sometimes it’s other people who brings the steps, sometimes its something I read or ideas that come into my head. Sometime stuff just happens and I dance along. Then it slows down. And I wait again.

When I was younger I found this dance difficult. I judged myself harshly when I went through times of waiting. I shamed myself calling me names like avoidant, lazy, indecisive, unambitious and lacking drive. I felt like I wasn’t doing enough, not contributing, not out there enough changing the world, fighting the good fight.

But getting older I realise it just didn’t ring true to me deep down. I don’t want to be super-poductive and ‘out there’ because I don’t feel that rushing towards the good life and fighting for change actually creates the world I want to be in.

I am still waiting for the words to describe the world I want to be in and how I imagine the journey there…