Rambling

Probably my favourite walk I've been on since the teeny one came along. In the moment, mindful in the best sense of the word, and connected.

A dog has had a happy time here too!

Cool air on my face, muted quietness dulling the country sounds under a layer of cloud, and the contrast between the angular scrunchy stones waking up each spot of my feet and the soft springy damp turf. 

The smell of damp earth and trees. The silent swoop of a buzzard. The warmth and gentle breath of the baby sleeping close against me in the sling. His coos and curious expression as he wakes up and looks around. The patterns of the spiralling straw in its bales that mirrors the perfect swirl of hair on the back of his head.

The shadows and changing light in the furrows of the ploughed fields as twilight falls. Relative freedom from memories as I stay present in the moment, walking in the more agricultural areas away from all the trees that carry the strongest reminders, and giving thanks for all the good things in my life, and for hope.

Sensory Self Care Saturdays

On Saturdays I roll out all the coping strategies.  Every Saturday is a self-care Saturday. They're not necessarily the same every week, but some of the current favourites (I won't list the negative ones...) are walks in the countryside, cuddles with the Piggy Peggies and painting by numbers. Today as you can tell by the blogging activity, writing has been one, as has seeing a friend.

I've written before about how sensory experiences can help with my wellbeing (here is a good place to start) and because one of the aspects about my autism that I get asked about most frequently is sensory needs, I thought I'd give a window on one of my coping tools of today.

I had a shower.

Sounds simple, but let me see if I can give you an idea of how I had a shower and what the shower did for me.

Before I had my shower I stayed in bed. Usually my self-care Saturday begins with a lie-in, followed by pilates - just the ticket (combined with Friday night yoga!) to getting back in line with myself. This was a hard week though, and Friday was difficult and included bathroom floor time for lunch, yippee. I have learnt that it is both survivable and at times beneficial to follow my body's hints that departure from routine would be wise. I cancelled pilates and stayed in bed. For ages. The weight of the duvet(s) gives wonderful proprioceptive feedback to the whole body and savouring the experience nourished me.

When I had finished duvet-ing I took the luxury of leaving my contact lenses out and showering with the light on.* I'm very short-sighted so this transforms my sensory experience: my eyes focus on the water cascading immediately before them, glistening in the light - sparklewater! (see also. sun on the sea or a river...)

I had no time limit on my shower; no deadline for leaving the house, no stressful event to prepare for later. I closed my eyes and tipped my head back, focusing on the sensation as the water woke my scalp and face. Nice and warm - bed temperature eases the transition on the body... calm. Tappy tappy touch dancing on my skin.

I have my phone set to play "My Mix" on YouTube - no stress of deciding what playlist I want to listen to, no decision making, but music that I like because it's made from my playlists.

I turn around to join the sparklewater again and become absorbed in the way the shadows of the water drops play on the white bathtub if I shake my hands and move my fingers.

Eventually I move on to wash my hair and myself, with familiar scents and an unchanging routine. When I start to overheat I know I've been there long enough and I share a last few moments with the sparklewater before I say goodbye. My shower has a five-second delay on its "stop" button - this Godsend makes the transition more bearable. And I know I can come again soon. I am so very grateful that I am privileged enough to be able to access this form of self care: physically, culturally, financially.

Photos just don't compare.
Go and try it for yourself if you can.

*It's funny, because it's there every day, the sparklewater, but it's a special treat to see it. My contacts give me so much (I cannot focus beyond about 20cm without them and I have much better vision than with glasses, not to mention they are so much simpler, especially in my job!) but in entering the world of the distance-seers I lose the beauty of the morning sparklewater. On weekdays I also shower with the light off because dimmer light is more calming for me and our bathroom fan makes an unholy racket too, and I need to retain all the calmness I can on schooldays!

"You did it"

So I did it. I completed half a term with no major work crises, no going home, no sick days. Cue congratulations and jubilation. "You're doing so well", "I'm so proud of you!"

The trouble with outwardly succeeding... functioning... completing something... is that it seems to blind others to the cost of the achievement. Once there is a visible outcome all people can see is this "winning against all the odds" . They want to buoy you up with the positivity, the "...but you did it!"s, the "well done"s and pass you on as inspiration for others who are struggling.

Positivity and celebration are valuable and important in general life, in recovery and in maintaining wellbeing, but the response above misses something vital. What was the cost of the success? Losing months worth of ground in recovery behaviour. Responding to children in unconstructive ways (what are all the potential knock-on effects of this?). Losing months worth of ground in the brain. Being absent from my home life and Mr Peggy who deserves so much more. Tipping the balance of believing in recovery back the other way. Reinforcing the belief of self and others that pushing through works. (When you use my achievement as "encouragement" for someone else struggling it may well do the opposite: make them feel useless and hopeless because they see no way to such achievements, invalidated and alone because you do not accept their current state, and worthless because the implication is that people are worth more when they achieve.)

IT DOESN'T. It is not worth it. I don't want to have to fight the recovery fight again now: I only just fought it.

Yes, I "did it" - I turned up every day and did my job more or less, but what have we really achieved? Reinforcement of every negative coping strategy that makes it even harder to crawl out of the hole that I tried so hard not to fall down again. So please don't congratulate me. Don't assume because it happened that I'm fine and better. Ask me how a long difficult term affected me. Tell me you're there no matter how many times I fall. Stay with me when I can't get up right now. Remind me that it doesn't have to be square one and that it's never too late or too early for change.

If you really want to support me ask instead of assuming, regardless of the outward appearance. But only if you're OK with whatever the answer is. When I tell you I'm sinking grab my hand just so I know you're there, and don't let go.

"I can see xxx is happening. Can you tell me about it?"
"X has happened that I thought would be difficult for you. How did it affect you?"
"I noticed xxx. What can I do to help?"

Then even if I don't have an answer at the time, or say I'm fine, follow up in a few days when I've had time to process. Even do this two or three times: it may well take that much for me to know you really mean it and for me to think it out and to feel safe enough to let you in.

It might look like winning, but I'm living the only way I know how to: winning might not always be the best. Everybody needs a helping hand and that's OK.

10 Deep Breaths for 10 Days

Day 1 (Monday): I follow Hania Therapies on Facebook as I visit Amy Manancourt for massage and yoga therapy. As I checked my page at lunch time Amy was presenting a challenge to her followers: take 10 deep breaths for yourself each day for ten days and see what happens. It seemed do-able and potentially interesting, so I thought I'd give it a go. I tend to think I'm pretty good now at listening to myself and allowing myself time because I have had to learn to do this in order to keep functioning. So I thought it would be interesting to see whether a little practice like this would change anything much or not. I took my 10 breaths when I usually have a mindful moment at the end of my lunch break and they encouraged me to linger just a little longer appreciating the stillness and my surroundings (though not much longer or I'd be late!).

Day 2 (Tuesday): As I took my 10 deep breaths on Tuesday I was reminded of when I first visited Amy for treatment a year ago. At the end of each yoga posture she would have me take three deep breaths in with a sighing breath out. Although I never mentioned it, I really struggled with this - hearing my own breath was incredibly uncomfortable. It felt painfully vulnerable, as though my most intimate self were laid bare (eye contact can also feel like this). Luckily I trust her a lot! I felt exposed and most definitely not invisible (A desire to be invisible can drive a lot of behaviour in my life. Currently reading a fascinating book on 'Exposure Anxiety' and autism - future blog post in several months when I've finished it...); troubled by my own existence and taking up of space and air. I also had difficulty in those days when yoga required stretching arms out when lying down. I think I felt unprotected, exposed and vulnerable again, and had to work very hard mentally to physically open up form my 'safe' closed posture.

I still experience these difficulties now when I am having a tricky day with Brian, and I have noticed that as soon as the difficult thoughts and feelings are present in my body it begins almost to shrink: to curl in on itself, becoming tense and making itself as small and invisible as possible. My 10 deep breaths helped me realise how far I have come from that first meeting a year ago though: I now notice this feeling in myself because it is not present all the time.

Day 3 (Wednesday):  On Wednesday it was very difficult to allow myself my 10 breaths. I think I got to about three. The day was challenging, the Brian was loud, and I didn't feel like I should be using the air I was breathing. I would be a better person, or have more respect for myself if I could do without that air. This sounds as though I have a terrible opinion of myself and non-existent self-worth, which isn't actually the case, so maybe it's not the best way to express how I sometimes feel, but I can't quite find any words that come closer. Perhaps it's more that fact that concentrating on the breath reminds me that I exist. I am here in this world, taking up space and oxygen. If I breathe, there is undeniably a "me". And on difficult days I find this a troubling concept to swallow. I'd like to be able to choose my visibility or invisibility. [edit: just read a quote from Exposure Anxiety - The Invisible Cage by Donna Williams: "so someone can actually trigger their own Exposure Anxiety simply because they become such an intense audience to themselves." Interesting.]

Day 4 (Thursday): On Thursday I still struggled, but managed to take my 10 deep breaths. Amy suggested on Thursday that we consider what we are grateful for when we find that moment where we give ourselves permission to slow down, listen and simply breathe. I was (and am!) grateful for birdsong, for sunshine and for hope.

Day 5 (Friday): I can't actually remember my 10 breaths on Friday. I thought when I started that I should make notes as I went along, but somehow didn't. I'm working on accepting this imperfection and going with what is. I usually take my 10 deep breaths time lying on my bench on the moor at lunch time, and the day was going OK at that point so I think it was fairly uneventful. The day later became stressful and I used some less constructive coping methods accidentally. I learn from this that I can never become complacent about how I am coping and that I must continue thoughtfully and intentionally looking after myself. I also continue practising acceptance of the me that is right now, with all of its different facets.

Day 6 (Saturday): I didn't get round to doing my 10 deep breaths. It was a busy day, and full of fun and excitement but also brought anxiety and some triggers taking me back to a time in the past where I was very much in the grips of my mental health disorder (particularly in the light of Friday). I stayed on the straight and narrow but my brain was busy! I could have made time for my breaths but each time I had an opportunity I forgot. Which is an insight in itself, really. However, I'm not going to berate myself, feel guilty or let the incompleteness or imperfection of my 10 days spoil things; rather, I notice, accept, and observe what this says about where I am right now.

Day 7 (Sunday): My normal routine has been rather out of the window this week because of Saturday's activities and preparations for the through the week. I always find it a bit difficult to balance weekends when I don't have a normal Saturday and today arrived with the relief of knowing my routine will be back to normal this week tempered by anxiety that I could not quite pin to any specific source. It threatened to overtake me as I searched for the balance between doing and not doing, preparing for the week (physically and mentally) and allowing myself to be however I needed to be. I couldn't settle to anything or find peace. I was pestered by thoughts of negative coping strategies and overwhelmed by all the things I needed to accomplish (including relaxing!).

I had set YouTube to "My Mix" (to create a playlist from music on my playlists or similar) as I wanted to listen to something but couldn't decide what. After a short while I was stopped in my tracks by a piece of music that brings an instant change in my internal state. It was the first piece of music playing when I walked into the JABADAO! training over a year ago, which was a day that changed my life (for more on this and also on Amy Manancourt see this previous post) . That piece has a lot of power for me and it reminded me instantly of my 10 deep breaths. I put down what I was doing, laid on the floor and took my 10 breaths. The breaths led me to my mat and half an hour of yin yoga. I won't claim it solved everything, but I was then able to go and eat something and from there to do a few jobs and then sit down and snuggle with my guinea pigs for a long and settled chill out. The anxiety didn't leave me completely: I'm still sitting with it now, but I got through the day without engaging in too many negatives, managing a few small achievements and having time to hopefully mean I can face the week ahead. I'm trying to be kind to myself about the things I might not get done, or the timescale I might be working to.

Day 8 (Monday): Well I somehow completed the day without disgracing myself in any dramatic way. I used coping strategies that probably aren't helpful in the long run, but they work to get me through what needs to be done. I don't have any other option right now. Despite not being able to allow myself some other things, I did defy the Brian enough to have my 10 deep breaths. Although I experienced a definite resistance to letting go at all, the breaths did help to relax my body and mind a little, for which I was grateful in the context of the day: a moment of slight relief is maybe all I would have been able to accept. On days like that, an attempt to grant myself anything is likely to be rejected as unacceptable because it is too much, too overpowering. Just a little at a time, so as to fool the Brian into not noticing.

Day 9 (Tuesday): Today was similar. I threw out my last lifeline early in the morning, which was caught by a couple of wonderful work Peggies perfectly undramatically and just about got me through a day which was even more challenging than expected. My thought while taking my 10 breaths was to consider carrying the practice throughout the days. I breathe very slowly so ten at a time takes quite a while, but I thought it could help when things are difficult to remember I might be able to stop and take just one deep breath, or even not to stop, but at least to take that breath for myself in the midst of whatever is happening, giving myself space to refocus. Of course I was then too busy the rest of the day to employ this and it only came to mind again once I reached my bed at night!

Day 10 (Wednesday): Reading back yesterday's writing is amusing as I recognise that taking deep breaths is hardly a new idea for somebody that has lived with anxiety for a while! It's the prescribed-to-all first line of defence and doesn't generally cut the mustard for me. But having committed to this practice for these ten days has perhaps brought back its value to me, and allowed me to find what a relaxing deep breath is for me, rather than one that is full of stress. It still isn't going to solve everything for me, but there are times when it could be the ingredient in my coping concoction that just gets me through a particular moment. And of course I know very well that taking a proper time out purely to ground/focus/meditate/yoga/pray/whichever precise emphasis or name you choose to take at a given moment does proportionally more to bring (or perhaps is even exponentially proportionate to) a physical and mental change of state. Can I restructure my days to facilitate more of this??

So I haven't had a perfectly-formed beautiful journey of discovery to share with you from my 10 Deep Breaths for 10 Days, but that is not what it was about - that is just what my perfectionist Brian would like to turn it into. Instead you have an imperfect but real record of my explorations and thoughts, ups and downs. I'm not even going to say successes and failures - just a story of what is. Down with judgment is what I say!

Busy Being OK

I can't really be sitting here by a field, the wind in my hair, birds in the air, while the day is carrying on without me. And I am not there. I am supposed to be there. I have a duty to be there, and The Plan was to be there. I can't not be there. Yet the wind in my hair and the pain in my stomach tell me I am here, and so do the tears as they start to fall. It's a cruel twist that the wind helping to calm me is carrying the voices of the local school children playing outside.

There are difficult conversations to be had, and difficult, heavy decisions to be made. The magnitude of the moment is at once a crushing heaviness and a weightlessness of incomprehension. For now, all I can really understand are the wind, the flight of the birds, the movement of the clouds, the water droplets on the leaves next to me. The tractor in the field behind me turns the soil. I remember how to breathe again.

Now, with the sun on my face and the wind moving my body, I know that for the minute it is fine to be busy being OK. I will sit here for as long as I need to.

I sat next to a field for two hours. Not quite true. I sat next to a field for an hour and a half, then I did some mindful stretching next to a field for half an hour. Then I went for a walk. I crunched leaves, I followed butterflies, I laid on the earth with the sun on my face. I stopped to watch the water sparkle and the dandelion clock fly away on the wind. I made a moment for the tiny blue wildflowers, I smelt the cowpats and I felt the textures under my feet. I let myself be captivated by the dancing and flickering of tiny white leaves bright among the darker trees of the woods. I remembered me. I am very grateful to be able to do these things, no matter what else I can or can not do.

The elephant in the room

Most people who know me will by now have some sort of idea that my mental health has been taking a bit of a battering recently. It's not great, my natural coping mechanisms are not healthy, and my work has been impacted, which is a line that I have always considered unacceptable to cross.

It's funny really, because I spend a reasonable amount of time promoting awareness of mental health issues and encouraging openness and conversation about mental health, yet I am still so very guarded about my own experiences. Perhaps I am not as stigma-free as I would like to think, or perhaps I just believe that I am somehow exempt from the compassion that I want others to experience!

BUT I am taking baby steps in learning how to live a better way.

I am learning to listen to myself, to act on the gut feelings I have about which situations I can manage when, and what I need to do in my unstructured time (or "down time" as those who don't frequent my work environment would say!). 

This isn't always fun or glamorous. It means letting people down (again unacceptable by my "rules"), letting myself down (cue even more Bad Brain Stuff), missing out, being boring, looking lazy or unreliable (another of my greatest fears).

As yet, admitting that I should avoid a situation doesn't even mean enjoying some quiet time to myself: it tends to mean a long battle with guilt, feeling worthless and useless, like a drain and a waste of time and space.

It is also risky: others may not agree with or understand my decision or preference. Those who know me well know that if I indicate a slight preference or wish for something to happen that is a sign that it is so enormously important to me that I have taken the risk to express it, no matter in how tiny or inconspicuous a manner. Those who don't will easily walk over the herculean effort I have made, completely invalidating it and making it even worse the next time I consider trying.

When I do succeed in listening to myself, articulating my discoveries and following through on them, and am stuck in that thought/feeling battle, I am learning to employ some "self-soothe" tools to help me to regulate and stay or become calmer. This is an approach introduced to me by my mental health team and is often used with people who experience high anxiety or distress. It may sound a bit whacky or irrelevant, but because of my awareness of the power of sensory experiences I had a fairly easy time embracing the idea (having said that, I thought I was doing it for about 9 months until I had one of those moments of revelation where suddenly something makes even more sense!). It still feels very wrong to care for myself when I feel that I have done something wrong, but I am learning that it is necessary and beneficial. It works really well as a calming toolbox for me, and with calmness comes the possibility of movement (both figuratively and literally!).

I am VERY SLOWLY learning to try and share with other people a tiny sliver of what is going on. I hate it. Every fibre of my physical being screams not to do it: it is like a complete block - a near impossibility. It is not safe at all in my mind, and fraught with risks and fears: I won't be able express what's inside, they won't understand what I am expressing, I will cause them discomfort (eg. fear, sadness, guilt), I will waste their time, they will be annoyed with me (even if they don't show it) or disregard the importance of what I am expressing, that they will think they understand, but not actually grasp it, and on and on and on. People trying to find out what is going on can make it even harder for me to share.

Occasionally by some miracle I manage to include somebody in what is happening in me (poor longsuffering Mr. Peggy and Ma Peggy and a couple of invaluable Work Peggies!). Sometimes it helps in some way. I'm hoping that through learning to talk about things with my psychologist it will gradually become more possible with other people. 

The "mental health" (or "mental illness") road is one that I am inclined to share even less than the autism road, but I think it is important to acknowledge it, even if not to go further in sharing it. Perhaps one day it will become as "OK" for me to talk about as my autism is now becoming, or perhaps not, but for now I will keep taking the little steps that appear before me which seem to be right to take.