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A long rave

A long rave

Edit Feb 2018: This thread has evolved into a chat thread, which is fine by me. In addition, I encourage other members to feel free to post their own 'long raves' in here too if wished. I will continue to post my own longer raves from time to time, as well as chat with friends along the way.

Original post from May 2016:

First of all, a (very) long post alert. Please don't feel obliged to read or respond. Mainly I am writing today to clear my own head of some things. So, here goes...

Last week, I managed to get to all planned appointments and activities every day of the week except Sunday. That only amounts to one, maximum two, per day, but was an improvement on previous weeks and months. I've made all planned appointments in a week before, but there have not been so many appointments in so many days consecutively. Many of you will know that, prior to about mid last year, I spent years very rarely leaving the flat. This was since the last of my breakdowns from paid employment in 2008 (one of so many similar breakdowns from paid working, though none as devastating in consequence as this last one). With each of these breakdowns, the recovery time got longer and longer. It's taken eight years to recover much at all this time around.

This week, so far, I've made none of my appointments or activities. In fact, I've not showered for days. Embarrassing to admit but maybe helpful to own up to it. As I write I'm still in what I wore to bed, as I was all day yesterday and the day before. The weird thing is that I don't feel that bad in my emotions, just crashed out physically and lacking almost all motivation except to use the computer. In other words, my mind and fingertips are alert and active, in fact nervy and overactive as usual, but the rest of me is crashed out. Perhaps I have entered what some people call a bipolar 'mixed state'. Whatever the terminology, this is where I am and I've been here so many times before.

The way I see it, there are a number of possible reasons for the way I am after last week:

  • inner conflict about how helpful my psychologist treatment is for me (saw her on Friday);
  • trying to further reduce my tobacco intake (the struggle seems disproportionately huge and exhausting);
  • needing recovery time from a big week (by my standards);
  • simply another manifestation of bipolar disorder in me.

Regarding the psychologist. She is young compared to me and I have the feeling that she may not grasp the full extent of my situation, partly through lack of life experience. Perhaps she may particularly lack an understanding of the various physical ailments that complicate things with me, some age-related (menopause, musculo-skeletal problems), one of them a chronic illness (crohns disease). She is treating me with some techniques from Dialectical Behavioural Therapy, something I honestly have never liked the sound of when I've read about it. The main 'homework' I have for this four week period is a sheet I am meant to fill out every night covering various things including tobacco use, coffee intake, isolating, unbalance eating, sleep patterns, lack of exercise. The sheet also includes sections monitoring mood every day. The problem I find is that monitoring and (by implication) tackling all these things at once is just overwhelming. I am significantly depressed after filling out the form because it seems to highlight all the ways I am failing rather than the ways I am succeeding. The psychologist has given me this sheet as homework once before and it had the same effect on me then. A full month long slump into depression is what followed. This sheet makes me feel very pressured to recover quickly from all of these things at once, a message that contradicts the advice of my psychiatrist (who I trust much more). His advice is to take it slowly and steadily and not feel rushed. As of yesterday, I stopped using the DBT form altogether. I am even considering giving up on the therapy with this psychologist after my next (sixth) session instead of seeing it through to the ten sessions my GP is willing to refer me for.

With the difficulty of further tobacco reduction, I am succeeding in reducing this a little more but the effort is gargantuan and seems to be sapping all the strength I have for making it out the door to my activities and appointments (or even to get dressed and showered). Writing here is just about the only thing that is distracting me from smoking again or thinking about it obsessively.

I've run out of steam on writing about it all now (a huge sigh of relief from any readers at this point).

I wonder if anyone else can make any sense of this.

27230 replies

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In response to: A long rave

Re: A long rave

Hi @eth @Appleblossom and all.

My support worker, also a friend, sent me an email today resigning from supporting me. Not sure if we still have any friendship, maybe after time has healed our feelings. Hope so. In some ways I am relieved because the friendship has really been confusing things for me in mind and heart.

Feeling pretty intense about it at this moment, headache, tension. I apologised for being angry in her presence, and towards her at two sessions, destabilising and distressing change of antidepressant (ongoing), and overwhelm with all the increased communications with new people with NDIS.

We were doing a trauma-informed yoga session for one of the two get-togethers we had each week, were about six sessions into that part of our work together. From the first session the yoga system she works with, and yoga itself, were not for me. My body didn't like it and I was unwell after the first two sessions.

But she kept wanting to persist with exercises I didn't like, which didn't feel very trauma-informed to me. I felt my health limitations were also being ignored or minimised. I tried to turn the sessions into something more creative and exploratory, something that may help me find movements that felt healing to my body traumas and pain.

In the end I have realised that she is someone who approaches things in ordered, structured ways, and may not have been confident or capable of exploring this more spontaneous path. She is new to this type of work and it was the system she works with that I signed up for at the start.

I have asked her to reconsider one monthly activity we started doing together, an evening outing that is enjoyable/interesting for us both. When she was supporting me through Phams some years ago, she encouraged me with making the scary move of going to this event for the first time.

A lot of good things have come out of that cultural event for me, some creative mates and a collaborator. Her work supporting me those years ago really made a big difference to my life and I am grateful to her. That's what's made this all so hard.

In response to: Re: A long rave

Re: A long rave

@Mazarita

I am not sure what the best response would be to maintain or let go...? I am not sure how much guidance spt wkrs get in managing their connections with clients. Not much from what I gather. Whatever happens, treasure the good aspects of it. That it has been a very intense, often rewarding, having a close relationship with your spt wkr, is pretty special.

I have had a little experience in the sense i had a yoga teacher piano student for a while (30 years experienced) and I had done my own yoga earlier on, so we talked a bit. There can be highly structured styles and personalities. Like you, I needed to be able to move.more than hold static poses. This friend had a student who had a whole dance degree, so she was really good at blending styles. Its not a given. Another friend had back issues from forcing the poses, and others told me it can get very competitive.I had done things that take discipline. Its not the only criteria. Yoga is not the cure-all for everyone. Eg I really NEED the active aspect of my physio exercises. I was pleasantly surprised as I noticed the improvements in last year. Trust the wisdom in your body.

Maybe she did her best. It is sad if it is over. It is good, now you do have other options.

I had the drumming session today with my spt wkr. He has agreed to do a little each week with me. He has also been grateful for other things I have opened up for him. I am sure your friend benefitted from being with you.

In response to: Re: A long rave

Re: A long rave

@Appleblossom thanks for the lovely post. I will just let it all unfold now, will await any communications from her. I am not too bad with patience like that. Friendships have come and gone and come again in my life. It's been that way with two of my closest friends from childhood and adolescence. If it's meant to be...

Your djembe/drumming support session sounds wonderful, grounding rhythms. Hope it continues well for you.

Today I booked a support worker to come and participate with me in a 2.5 hour improvisational dance/movement group workshop tomorrow night. No idea how many people will be there! It wasn't so easy finding a support person willing to participate with me in the workshop itself, know almost nothing about her but going with the flow. 10 emails and a few phone calls to organise it and sort how to pay through NDIS, book tickets, etc!

Excited about this, a bit intimidated too, naturally. Part of it is a dance journey given by a mystical woman who also djs at raves. Dancing at raves was one of the great pleasures of my life in the late '90s and I've missed it. Mindfulness influences are part of the approach, and no talking while dancing (love that). Will update you after it's happened.

Yoga, I've discovered, is not for me because I do not like floor exercises, find them too painful, especially now with osteoarthritis and related neurological issues. One the other hand, standing movements I like. Sometimes it just being about making intuitive shapes in space that are not always so square or, as you say, structured.

Movement that feels good, such as I have been appreciating greatly with the bush walks.

Yes, the wisdom of our bodies.

In response to: Re: A long rave

Re: A long rave

@Mazarita

I recently went to a Tai Chi group, try it agin kind of thing, but even that put out my lumbar area, so more and more am thinking gentle dance forms is the way for me too.

Sounds Wonderful Sister.

Enjoy!

In response to: Re: A long rave

Re: A long rave

Hi @eth @Appleblossom @Exoplanet and all.

Today is a recovery day. Going to my friend's this arvo. Upper back still sore still from Tuesday night's dance workshop. Two hours straight of improvisational dance to electronic dance music. I can't believe I actually managed to do it, and to enjoy it, though there was almost no direction and so got kind of boring around the 75 minute mark.

Asleep as soon as my head hit the pillow, at least nine hours straight after that. Is aerobic movement an answer to my decades of poor sleep, I wonder!

I strapped up my ankles with chemist ankle straps, added extra padding to the inside of the shoes. Was able to get runners through NDIS that didn't slide up and down on the back of my feet until almost out of the shoes like my previous second hand ones that I got for free. First time I've been able to afford a proper fitting to buy shoes at Athlete's Foot.

NDIS approval for that on a referral from my physio. Could not have done the dance workshop at all in those old runners. Admin meant I could only get the new ones on the actual day of the workshop. Wore them straight out of the box with no 'new shoe' type of breaking in or blisters etc. Champion shoes.

Weird how I could have needed about two days sleep after my first gentle yoga class, and was unwell after the second, but could dance for two hours some weeks later. I don't think it's all about increased fitness as I've only mainly been doing walks between bus stops, a couple of short bush walks, no more than 4km easy walking in a day, and not every day.

I think it's about actually loving dancing since I was a child, having missed it for about the past 10-15 years but limited by huge problems with feet. That was after the six or so years of almost never leaving home and spending whole days asleep in bed or sitting in a chair literally doing nothing at all, not even interested in TV as a distraction. Those years left me almost unable to walk any distance, certainly not able to do it without severe pain.

Clearly I found the dance workshop ten times more inspiring than the 'this is good for you' motivations we hear over and over from mental health sources. These give only a small amount of motivation to me, none when particularly depressed, and can actually cause resistance and self-beating as I often feel like a naughty misbehaving child when approached this way.

One of the things I've been saying to almost all support workers and mental health professionals I am encountering through NDIS is that activities that actually inspire fun and enjoyment for the individual person help way more than the 'good for you' stuff.

This is simply because they don't require so much of the 'climb a mountain' feeling when we are depressed. Enjoyable inspiring things actually draw me out of the home. They are a 'pull' factor that helps me get out instead of many other 'good for you' activities that for me require so much more pushing of myself, and therefore often fail me.

Anyway, feet were very sore afterwards but no sprains or damage. I was especially conscious of the way I was moving with my feet and took care of them that way even while dancing. But I did throw my upper body around a fair bit. Neck almost went into spasm a couple of days later but I took care of that well and it passed.

Yay me.

In response to: Re: A long rave

Re: A long rave

Gidday Mazy @Mazarita ❤️

Good on you girl! 2 hours of dancing!! hell, just 2 hours of being on your feet!! I think if
your really enjoying what your doing, your thought & emotional process can overcome
pain. I don't know if aerobic movement is going to be helpful for your sleep pattern, but
maybe dancing is worth pursuing. Comfortable shoes are vitally important, your feet
affect your whole body, they take all your weight & it's up to them to distribute it whilst
your moving it all over the place. I do think the gentle exercise you've been having would
have helped a great deal; instead of just 'move it or lose it' you've taken it to 'move it &
gain the joy of dance' 🙂 I hear you about the 'this is good for you' stuff, but I think that
stuff has it's place; when your in that empty space, void of all light, doing stuff you know
is good for you, even though you don't want to, can lead to allowing yourself to do stuff
you enjoy. Perhaps the problem with some health professionals is that they're so embedded
in their training, that they can't see when someone has gotten past the 'good for you stuff'
& is ready, indeed may need, the enjoyable stuff to further their healing process? I also
know the self-humiliation of not being capable of the 'good for me' stuff, personal hygiene
for instance, something we relate with. I enjoy having a wash & having a clean mouth,
thinking I might avoid some dental discomfort - but more often then not those mountains
are too high for me to climb. Yet I'll take to the sky, when I pack up & drive out my front
gate to an unknown destination? I guess that's my 'pull'. I know that doing the things we
want can also mean we know it's gonna hurt, my latest trip was a doozy; but like you I
took care of it . . . of me, like you did ❤️ Good on you, good on me, ya us 😄

Enjoy your visit with your friend ❤️

Love you Mazy ❤️

In response to: Re: A long rave

Re: A long rave

Hi @Exoplanet

I love when you said: 'instead of just 'move it or lose it' you've taken it to 'move it &
gain the joy of dance'.

Weird with finding myself able to dance like that. When going slower just in ordinary life even know, I am more aware of the pain and sensitivity of my feet. For example, I still need to walk slowly and carefully up the stairs here and be conscious of how I step, avoid ankle wobble, don't flex my right ankle at too great an angle, etc.

It was described as 'healing ecstatic dance' and encouraged us to let our bodies guide our movements. Inspirational themes over the session were earth, fire, wind, air.

The young woman facilitating and dj-ing said she had been diagnosed with Multiple Sclerosis 10 years earlier. She was dancing freely and energetically, way beyond anything that might be expected from someone with MS, no difference from anyone there.

But yesterday and today I have been suffering more with neck and upper back, prn meds last night when I couldn't hack it any more. So not sure if or when I will go back to that activity as I may continue to find it difficult to avoid inflicting some strain. Instead I'm going to try another healing kind of dance workshop I've found that is much slower and gentler, on Monday week.

Maybe being able to dance like that was also to do with letting out a lot of emotional energy, from the irritability, overwhelm and anger I've been experiencing lately. Maybe that intense energy being released physically was also why I slept so well that night.

I've been showering mostly every two to three days since I moved into this place in November last year, and brushing my teeth well mostly every night. Go figure. I've often found that each location I live in change my life in some ways. Maybe it's that there's the opportunity in a new environment to move past some old patterns. Anyway, this big change has been easy for whatever reason.

You are right about the 'good for you stuff' being good for us, different people, different times. I was thinking about that later after I wrote it. Not sure why I sometimes need to whinge about mental health services - maybe it's that I often feel, as I said, like a naughty child being 'corrected'. Partly my oversensitivity and pride.

Awesome that you are back triumphant from your trip. Sounds like there's a good story coming up when the inspiration finds you.

Love,

Mazzy

In response to: Re: A long rave

Re: A long rave

Lots of people to say hi to because I've been absent for about 2 weeks. Thankyou so much to those of you who've been tagging me and keeping me in the loop.

So ... a big hello to @Shaz51 @Daisydreamer @outlander @Appleblossom @Oaktree @Judi9877 @Zoe7 @Angels333 @frog @TideisTurning @Exoplanet and also to @Emelia8 @MDT @TAB @Adge @CheerBear @Maggie and so many others I've been thinking of. You know who you are if we've had a connection.

I managed to get approval for my NDIS plan to be extended for 12 months instead of having a plan review which can be full-on. Also postponed doing the writing residency until later in the year. I was spinning out about these things colliding in time along with a course in DBT which starts next week. Spent a couple of weeks twice down the NDIS rabbit hole thinking I had to prepare for a full review. My sister-in-law has used the word accretive to describe how obsessed I become with NDIS matters, paperwork etc. I was searching for all reports that have been done for me since I started the NDIS journey, and ultimately think I found them all, but it meant going through about a foot high pile of documentation etc. In between necessary appointments and errands, support worker 4 x per week, writing group, writing days with a buddy, tai chi twice a week, a few blessed days at the farm .... etc etc and blah blah blah!

Thanks for bearing with me everyone. I think I need to actually schedule in time for the forums but haven't managed to do that yet.

@Mazarita I saw about what you went through with your support worker/friend and hope you've found a peaceful resolution to the matter. I just want to say that ultimately you are the customer and they are providing a service, no matter how close you become. I thought it might prove tricky for you but didn't want to be disparaging at the time. Each to their own. Having NDIS is always meant to be about having CHOICE and CONTROL in your life and we all make different choices. But for me it's really important that there are some boundaries in the way communication happens with support workers. That's what I've found works best over the last 3 years. And by that I mean that it's not appropriate for them to be as candid about their life issues as I am. Or to push their own agendas, rather make gentle inquisitive suggestions and really hear and respect my responses. I find it helpful to have a document I give them when they start with me which details my goals, the steps I want to take, the activities I want to be involved in .... I also make sure they have some education (e.g. cert IV in disability support) along with relevant work experience (with bipolar if poss but def with PTSD) and their lived experience can be helpful too but is not my main criterion. This is why I find the HireUp platform so good - I can put filters into my search for a worker and also they read my support plan and bio before they consider my job description. It can be a time consuming process of interviewing and shortlisting then doing 'buddy shifts' where a long term sw comes along too, but this method has evolved as being the best for me and I've found 3 really excellent people since I started doing it. Really hope this doesn't come across as preaching, I just thought it might be helpful to tell you how I do it.

Love to all reading this. Go gently amid the noise and haste ...

In response to: Re: A long rave

Re: A long rave

Sounds busy @eth hope you are okay Sounds like you are living. Motivated. Interested. well done

In response to: Re: A long rave

Re: A long rave

Always good to see you about @eth

You've had a lot on. Very glad to hear about NDIS.

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