Tales from times of exhaustion #3 – rapidly fluctuating

Having a rubbish day.

Have left the kettle boiling away 4 times now… Kitchen is well steamed. Have no attention span what so ever. And my coordination sucks so am constantly dropping things and misjudging my movements.

Don’t have much patience with myself on a day like this. Wish I could just lie down and sleep and not be aware of anything. But if I lie down I start thinking about all sorts. Especially all the things I want or need to do but can’t. So I am up and about trying to keep myself distracted without doing too many stupid things…

Last week I was in a swamp of exhaustion. This week I am fluctuating rapidly which is frustrating to deal with. In a different way than the full on collapse. Last week I was readjusting to a massive change in ability and energy. This week I am having to constantly readjust to my fluctuating mood, fluctuating energy levels and fluctuating tolerance of my environment. I can go from feeling alright to feeling completely overwhelmed within minutes.

I want steady linear progress. I want certainty and predictability. I want to know that if I do A then I will feel like Z or C… But no. Because factor K, P, X, F, Y etc plays in. It’s a bloody mess. If I do A at one time I might feel Z but if I do it an hour later or in a different room or on a full stomach or after having done B then it affects me differently. There’s no knowing when things are going to be ok for a while and when they’ll suddenly go to pots.

I am forced to be patient with myself and deal with the here and now as it is. Whatever the here and now is at any given time.

I’ve had good days and bad days this week. Good hours and bad hours.

Bad times are annoying. But good times have their own challenges. The temptation to start doing loads and getting a bit high from relief. Where as I should be keeping a low activity level and rest as much as I do on a bad day… But the restlessness has been stored up and is overflowing. So when my energy is better I inevitably do too much and then there is a backlash. I do need to take advantage of energy ups – I need to move and socialise because it helps my overall state. But I need to pace myself. Constant trial and error.

I can’t make plans and I can’t commit to anything because I am not reliable and I don’t like disappointing people. Luckily I’ve got a friend who lives around the corner who is understanding and who I feel comfortable around even when I feel rubbish. It helps me to avoid complete isolation. Because the less I socialise the harder it gets. Socialising don’t come easy to me anyway so I have to keep practicing otherwise it just becomes this massive hurdle to get over and I have to re-train myself to be around people which can take a while.

My therapist has talked with me about a concept called ‘the window of tolerance’ which I am finding quite useful. Thinking about my fluctuating mood and energy in terms of over- and understimulation helps me accept what’s going on and readjust in more appropriate ways. Finding that space where being me feels tolerable. Where I am not understimulated (feeling low and sad) and not overstimulated (irritable and confused). My window of tolerance exapands and shrinks. Sometimes it takes nothing for me to start fluctuating. Other times I can test my limits a little bit.

Having to rest and slow down is a lot hard work…

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.

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…