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…

Highly Sensitive People in an Insensitive World by Ilse Sand

Finally holding the real thing in my hands.
What an amazing journey it has been so far; from meeting Ilse Sand in 2008 because she was one of the only therapists working with highly sensitive people in Denmark at the time, to reading her book the first time in 2010, then moving to England and realising how much I wanted to be able to share Ilse’s writing with people I met over here and while teaching and travelling.
Translating the book was exciting and hard work but the toughest bit turned out to be trying to find a publisher. In December 2015 things suddenly picked up and a contract was signed with Jessica Kingsley Publishers by the end of the year – and now it’s here! All those months and months of work made tangible.
It’s been a great privilege to work with Ilse Sand on getting her book published in English. I’ve learned a lot about how the publishing world works and feel a bit more confident about one day writing my own stuff and getting it out there.

Get the book here

Please note that JKP books are available in UK, US, AUS and Canada – choose your area in top right corner of the website.

More about Ilse Sand and her work: www.highlysensitive-hsp.com

On Facebook: https://www.facebook.com/highlysensitivepeopleIlseSand/

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