Tag: stress

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

Posted in chronic fatigue, compassion, kindness, Pain, patience, self-care, sensitivityTagged , , , , , , 5 Comments

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 #2 – how a day might go

Posted in chronic fatigue, healing, kindness, Pain, patience, self-care, sensitivityTagged , , , , , , , , , , , , 2 Comments

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

Posted in chronic fatigue, kindness, Pain, patience, self-care, sensitivity, uncertaintyTagged , , , , , , , , , , , , , 5 Comments

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…

Gratification

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Feeling gratified… Feeling like you have achieved something meaningful, feeling pleased with – or proud of – yourself and maybe give yourself a treat. I have heard that our biology is supposed to reward us when we experience good things and I can see it happening in my own partner when he feels he has achieved something or done something that satisfies him. But somehow my biology does not work like that…

Or rather it doesn’t work like that with most things – things that seem to bring excitement, happiness and gratification to other people, quite often just fills me with unease and sometimes dull emptiness. When I have finished a job I don’t ‘feel it’. Somehow my body doesn’t know that I have finished a job, no matter how much I tell myself: ‘its done, you did it and you did well’. No flipping response…

September has really confronted me with this frustrating conundrum. My partner and I have been delivering at least 7 workshops this past month in very different settings – an activist gathering, a recovery camp, a well-being weekend for young mentors with sight loss and to a group of Mental Health Nurse students. I have felt incredibly privileged and inspired. But I have also felt very, very overwhelmed.

On top of this, I and my co-conspirator Mike have been working our a**** off to finish a translation. Its been an ongoing project this year but we had to get it finished before October. And today I did the last bit of editing and handed the book (Children Hearing Voices) over to the group in Denmark that is working towards getting it published. I have SO been looking forward to this day. The translation has been hanging over me for so many months and there have been many days where I have struggled through fatigue and fuzzy head to get the work done. I have experimented with ways to both relax and stimulate myself enough to be able to work. And now, today, its done. Done.

But I just feel a bit dazed.

No rush of excitement or them endorphin’s other people talk about. No serotonin or dopamine or whatever else is supposed to be shooting around in my brain… No satisfaction. No relief.

I remember the first time I finished a translation of a book  (Highly Sensitive People in an Insensitive World). Months of work finished. Didn’t feel a thing. Not even the relief I thought I would feel. It wasn’t till long after the book was published that a sense of gratification started creeping in – I am talking over 18 months later. And it wasn’t a powerful feeling, something I could get high on. Rather it was like a quiet confidence in my own abilities.

I get the same when I give talks. I don’t get high – I get drained and my satisfaction doesn’t come from it being over or from positive feedback from others. My sense of satisfaction comes days or weeks later – when I have had time to process what I have done, gone over the details, felt into my body and weighed all the things I did and what happened and I have decided how I did. Then I might begin to feel like I have done something worthwhile.

As I keep searching for ways to combine my talents with my passions I learn a lot about myself. I try and remind myself in advance that I won’t feel a sense of achievement so that I don’t get too confused – I tend to keep expecting myself to respond differently than I do. I also try and remind myself that rushes of adrenaline does not make me feel good and focused – it makes my allergies intensify, my body nauseated and everything in my head all jumbled up. To be focused I need calm and predictability.

In recent years I have come to realise, that if I want that excited sense of gratification I need plants around me. Growing plants, flowers, fruits and vegetables is my place of gratification – delayed gratification and sometimes uncertain because there are so many factors I cannot control when dealing with plants.

But there is nothing quite like the feeling of walking around the house or the garden to have a chat with the plants. Or harvest all the produce they are offering. Or look out the window and see the courageous nasturtium and unknown white lily-like flowers in my pots shining bright despite the stormy, wet weather.

Another way to work with my lacking sense of gratification is to treat myself. At which I am very good. I believe that by treating my body and my senses to good things – food, aesthetically beautiful things, loving touch and hugs or comfortable environments – I am telling my body that I am worthy of love, safety, beauty and harmony. Its like a wordless dialogue with my body – a body that keeps responding to the world as if it is a nightmarish hellhole. And I just keep telling it that there is more to life than all the overwhelm, fear and difficulties.

Threat levels…

Posted in england, self-care, sensitivity, social skills, uncertaintyTagged , , , , , , 1 Comment

I enjoyed the British threat levels hashtag that was trending a while ago. And because there was a little truth in a lot of the statements, I started thinking about my own threat levels and how frustrated I get with it.

It was such a relief to chuckle about those little things but it also made me think that this might somewhat explain why I feel at home in England. The social anxiety, political correctness, the tensions and the propriety obsession. I only feel like the odd one out some of the time 😉

Anxiety is more or less a constant companion for me. So any extra added anxiety or stress is tricky for me. I have noticed how other people can seem to enjoy getting stressed, worked up or scared e.g. watching scary films or having to rush for something or getting in to a debate. Like they get a bit high on the adrenaline. I really, really don’t. When I experience heightened threat levels I feel quite ill and it takes me a long time to recover – or get back to my normal uncomfortable but familiar level of anxiety.

Anyway I want to try and look at my threat level triggers and taking a bit of a humorous stance with them. Even though that might not come across in my writing.

So here is the ESMD* threat levels colourcoded overview:

Red alerts (things that make my body feel full of terror. Stress levels out the roof)

  • Waking up in the morning and realising I won’t be able to sleep any longer.
  • Bus or train arriving and it’s packed and i am having to quickly decide whether to get on or wait for the next.
  • Feeling like a tiny spider/aphid/fly is crawling around on my skin no matter how much I try to wipe it away.
  • The phone ringing! Here’s how it goes: withheld or unknown number I feel a little relief as I think I am less obliged to respond. Known caller – total panic and I spend so long trying to decide what to do that it goes to voicemail.
  • Voicemail icon showing up on my phone – do have to listen to it straight away? If I wait the icon just springs at me every time I look at the phone. I use the phone as a time piece – I start calculating whether I’ll need to look at the time any more that day. I put the phone away and for the millionth time start thinking about getting a pocket watch.
  • Looking in the fridge and cupboards and not seeing anything I want to eat. I decide not to eat – panic avoided for a couple of hours…
  • Getting dressed and having limited time to get ready and everything I try on just feels wrong and uncomfortable. Usually my hair then starts acting up too and my hands and arms start hurting trying to sort it out. Eventually go out the door ready to have a tantrum.
  • People getting angry with each other and saying rude things and I cant not hear it.
  • Penalty kicks in football. Or even worse: penalty shoot outs!
  • Packing for travelling.
  • Getting angry about something and not knowing what to do.
  • Something (read any thing) not going according to how I see it in my head.
  • Unpredictability.
  • Uncertainty.

Orange alerts (things that make me feel nauseated and slightly panicky. Stress levels elavated)

  • Whatching a knockout in a boxing match or a bad tackle in a football game.
  • A good book finishing.
  • My partner coming home earlier than expected. No matter how much I have been looking forward to seeing him. Luckily this rarely happens because he texts me advance so I know I have to make the transition from being on my own to being with him. I am just pure grumpyness if I haven’t had a chance to prepare myself. I am only a little bit grumpy and not for long when I have had time to prepare.
  • Being asked to make a spontaneous decision. Or just being asked to make a decision.
  • Feeling responsible.
  • In sports: The underdog looking like they are going to win but then something changes and they loose. I usually have to stop watching (beginning to think I just shouldn’t watch sports…)
  • A plant dying because I forgot to water it or its got some disease I can’t help it with.
  • Slugs eating little seedlings.
  • Food going off and I am having to throw it out.
  • Somebody knocking on the door.
  • Forgetting something. Usually after having reminded myself of it twenty times because I know I can’t cope with forgetting it.
  • Being around intoxicated people. A little bit easier if intoxicated myself but then of course even mild intoxication is like russian roulette (headaches, brain fog etc) so if I have anything remotely important planned next day it is not an option.

Yellow alerts (things that make me feel restless and uncomfortable. This is actually my everyday state… Thought it was normal till I was 24 and started doing bodywork, see blog on bodywork)

  • Opening my email inbox.
  • Finding my phone after having left it somewhere where I cant hear or see it for hours.
  • Encountering a friendly, chatty person and not remembering how I am supposed to respond because I hadn’t prepared myself for being sociable.
  • Enjoying myself with a friend and beginning to feel overstimulated and then getting annoyed with myself because I want to keep hanging out but I know I’ll be grumpy once I come down from being high on social interactions.
  • Waking up briefly for the 5th time in the night and feeling like I’m not sleeping properly.
  • My morning or evening rituals being interrupted by things like: being to tired to do them, having to get out the door a certain time to catch a bus and be somewhere, my hair being so tangled it takes more than 2 minutes to sort out, my skin being so dry and itchy/painful I have to put moisturiser several times after I have lied down to sleep.
  • Feeling ready to sleep after having been up and awake for 2 hours. You know that afternoon dip? Well, mine happens around 11am.
  • Trying to have a nap during the day but giving up after lying there for an hour.
  • Knowing full well that sugar and coffeine will not give me a boost of energy but trying anyway and then feeling sorry for myself when it doesn’t work.
  • Getting annoyed with people talking about having a coffee buzz or a sugar high (oh just go away will you).
  • Feeling guilty for getting annoyed with other people.
  • Not having interacted with anyone but my partner for a week and when I notice it I am not sure what to feel about it.
  • Feeling something and not knowing why.
  • Being told to: ‘just come around’ or ‘give me a call’ and then never doing it. Then being told again and starting to worry about how to explain that it’s not that I don’t want to, I just forget, because most of the time I’m fairly satisfied in my own company. Not that I don’t want to come around or have a chat but if it’s not planned, more often than not I just don’t remember.
  • People bumping in to me. Especially if it’s in a queue and I cant get away and they keep bumping in to me. I have this trick of stepping slightly out of the queue.
  • Bumping into people. It does happen!
  • Walking towards people on the street and they don’t move out of the way before last second and then they’d brush against me if I didn’t do massive avoidance manuevres.
  • People taking me seriously when I am joking.
  • Feeling unsure whether it’s okay to write ‘I  enjoyed the British threat levels hashtag trending’ without honouring the painful context it occured in.
  • Beginning to think too much about what I write or say…

*ESMD – Elisabeth Svanholmer Most Days

Sort of related:

I found this read below a while back and it made a lot of sense to me and resonates with my personal experience so I thought other people might find it helpful as well.