Tales from times of exhaustion #4 – managing thoughts and feelings

The longer my physical struggles go on the more energy I have to spend on managing my thoughts and feelings.

Just did a mood intervention because I was finding myself spiralling downwards fast.

Body crashing, pain creeping into my neck and head, soft tissue stiffening up all over.

Thoughts of the pointlessness of it all, thoughts of the countless times when its been like this before, thoughts of giving up and just withdrawing – into myself, away from all my difficulties, away to some other world where I don’t have to deal with my limitations.

Feelings of intense inadequacy, frustration with myself – frustration with anything really, losing motivation to try to do anything, sadness about all the things I can’t do, anxiety about all the things I need to do and don’t know when I’ll be able to…

When spiralling down it can draw me into a state of mental and physical lethargy. In glimpses of clarity and awareness I realise I have to step back and try to shift things. Sometimes these glimpses are so short that I’ve forgotten about it the next moment. Other times they are long enough for me to actually make a move.

I had a big cup of sweet, creamy coffee and a big bowl of dark cherries (anti-oxidants, muscle recovery and sleep), melon (hydration, fibre), vanilla ice cream (combination of cold and sweet seem to stimulate my brain and clear my thinking, smell and taste of vanilla calms me) and dark chocolate (flavanols). And some pain killers.

It can feel like a failure when I can’t manage my pain and I have to take pain killers during the day. I try to manage my pain through a mixture of activity, stretching, heat and distraction and then only take pain killers in the evening to help my muscles relax in the night so I’m not too stiff in the morning.

My back is really vulnerable at the moment and the pain is draining me. I want to participate in a ballet performance this coming weekend and have been trying to pace myself. I have been struggling with my feet as well lately and my calves have been tight. So I skipped ballet Monday evening in order to have the energy for a class Tuesday and for the weekend. Tuesday evening I try and do all I know to keep my muscles warm and subtle and not strain anything. I’ve got my ankle support bands on. The room is warm and its generally a gentle class. Yet I manage to strain my left calf… It happens so quickly that I can’t do anything about it.

So now my mobility is even more limited. Forget about intense exhaustion, soft tissue that stays stiff no matter how much I stretch and move it, in-explainable pain everywhere and tightness that gives me internal claustrophobia. This is just a plain, stupid injury and it seems so unfair.

I feel infuriated and hopeless. Even if I wanted to do gardening or walking I couldn’t. I can just about walk around the house and up and down the stairs. As long as I don’t stretch my leg it seems ok.

I’ve got my feet up and am resting my calf in the hope that it will get well enough for me to do the performance on Sunday. It’s naive and ambitious but I am not willing to accept that something I actually feel like doing – when I generally don’t feel like doing much of anything – might not be possible.

It’s incredibly demoralising to do everything you know to look after yourself and yet your body seems to keep deteriorating… My bouts of low mood come on quicker, go lower and are more tricky to disperse. Shifting my state of mind means I have to believe its worthwhile. My energy is so limited that I am continuously prioritising and hoping that what I am choosing to do will be helpful.

When I feel low my thoughts and feelings seem to circle around themes like

  • me not feeling able to contribute to my community
  • me not being able to do practical chores
  • me not being able to relax
  • me not being able to socialise
  • me not being able to enjoy things I normally take pleasure in
  • me not being able to be present and kind when with my partner
  • me not being able to engage with things I feel passionate about
  • me not being able to do physical exercise without feeling significantly worse
  • me not feeling part of life around me

So overall feeling quite disabled and overwhelmed by internalised ableism… When I look at my feelings of inadequacy I find that there are certain areas (or needs) that I can focus on to help myself choose ways to shift my state of mind.

I feel disconnected and isolated so I try to think of things that can help me feel more connected without feeling overwhelmed. I feel purposeless so I can try and do things that are meaningful to me. I am experiencing so much pain and discomfort that actively creating pleasure for myself can bring temporary relief.

Meaning/purpose

  • doing small manageable bits of work like respond to one or two emails or messages
  • talking through work with my partner and requesting he take more of a lead on specific tasks so that I still feel involved but not overwhelmed with responsibility
  • set realistic standards for myself in work I have to do – simplify things
  • finding meaning outside of work e.g. appreciating days when I am able to do some weeding and caring for my plants
  • personal writing when I can even when it means postponing work writing

Comfort/pleasure

  • treat myself – finding a balance between eating and drinking things that comfort me but also sustain me (nutrition dense, supporting steady blood sugar levels etc)
  • check in with my body whether things I think are nice for me (to eat or do) are actually nice at the time. At the moment I can’t always rely on my previous experiences of pleasure. Being sensitised things I normally enjoy can feel very uncomfortable and overwhelming
  • being pain-free is not the goal. Pleasure and comfort coexists with pain – I can experience pleasure and comfort at the same time as I experience pain. So I cannot measure how successful an intervention is by whether it relieves pain but rather by other effects it might have – like lifting my mood, giving me a bit of energy, clearing my mind, making me feel calmer or helping me laugh
  • singing along to music I like. Most of the time I can’t cope with ‘the noise’ of music but when I can I find it helps me to sing
  • watching some familiar tv series – familiarity is comforting and it saves me from the unpredictability of watching new stuff
  • I am so grateful that the world cup is on at the moment. It gives structure to my day and I have something to watch that I don’t feel attached to so it doesn’t overstimulate me
  • buying stuff… This one is tricky and I need to do it discerningly as my decision making is really poor at the moment which can lead to more frustration than pleasure

Connection/belonging

  • accepting that socialising usually causes a minor crash but I have to believe it is worthwhile
  • being discerning about social media because at the moment it can make me feel more disconnected
  • forgive myself for not remembering or not having the head to respond to people I care about. Responding when I can and accepting that my responses are going to be short. Luckily most people I know don’t seem to take offence
  • savouring the views where I live and try and focus on the joy of living here rather than the frustration that I can’t get out into it much
  • connecting with myself and with parts of me that don’t get much space at the moment. Self-connecetion is tricky because it generally means connecting with uncomfortable feelings and sensations and then I have to spend a lot of energy on self-compassion. But I try and tune in and see if there is anything I can do to give space to parts of me – like my playful self – without it being too exhausting

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.

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.

When self-care bites

Yesterday self-care was like looking into the dark abyss – yesterday self-care meant making a painful decision. Only two-three options to choose from and they all sucked one way or the other… My head, heart and gut strongly disagreed on the way to go, so what to do?

When in doubt I listen to my gut.

Even though my head and heart make much better arguments, I have learned from experience that that wordless wrenching feeling in the pit of my stomach is the one to go with.

I cried and cried and cried last night, totally despairing that I had to make this decision. I wanted to stick my head in the sand AND soldier on pretending everything would be fine. But there was no way around it. While I was dissolving in tears I had moments of hoping that the crying would sort things out for me. Or that I would have some amzing insight into a way forward. But the crying didn’t change anything. I still had my crappy decision to make.

My back injury has flared up and it means that I am in pain from the chest down. Doesn’t matter if I stand, sit, lie or walk – it hurts all the time, just in different ways. Pain killers don’t make a difference and the pain affects my cognitive functioning leaving me in a bit of a haze. It also hurts emotionally because I’ve been doing well for more than a year now and been getting back into ballet, so it feels like a massive set back. And the uncertainty is painful as well; whether this will last for months or if it will get better within weeks. Once it took over a year and the fear is always that it won’t get better this time…

Thursday and Friday this week my partner and I have put on a two-day course in London on Compassionate Communication Skills in Mental Health Settings. We’ve been wanting to do this for a long time and was excited when a friend, who is a certified NVC trainer, was up for doing this with us.

I woke yesterday hoping my back might get better during the day but as the evening came nothing had changed. I was feeling sad and moody, annoyed with myself for not having done enough to prevent this flare up…  I’d sat down with my partner to find something to watch together when I suddenly found myself saying “I wish we weren’t going to London tomorrow.” Until that moment I had been in denial about the effect the pain had on me. And it wasn’t till the words came out of my mouth that I realised I had to decide whether to go to London or not.

My three choices were: 1) to go and do everything as planned 2)to go but be less involved in the training 3)stay at home.

My heart wanted to go. “Go!Go! Go!” It said. “Everything will be fine. You can’t miss out on this, there is so much to learn.”

My head wanted to go but take it easy. “You need to learn to be more resilient and this is a chance to thicken your skin a bit. You can’t keep bailing out when things get tough. You might always be in pain so you have to learn to deal with it”

And my gut… My gut was just full of this sinking, wrenching feeling at the thought of the long drive, sleeping in a different bed, being nice and sociable, facilitating training, negotiating space and roles with my co-facilitators and keeping my head focused while managing my pain.

I knew my heart and head were right. I could do it. But it would undoubtedly be at a cost. All three choices would have difficult consequences.

At the moment I feel like I am in shock from being in pain again and I know that I would have to dissociate in order to go and do the training. I dont mind dissociating – it is very useful at times like this – but then there is always an aftermath that I will have to take care of. Maybe if I had had a week to gather myself it would have been more manageable.

So for now I have chosen to go with my gut, stay at home and get reacquainted with my pain-managing skills…