Staying/Getting/Doing Well – Moving goalposts or fixed target?

[Paw Prints]

Hi, this is my first post, though I have been reading the forums for some weeks. I’m probably expressing myself badly when I say that I have found reading about other people’s journeys reassuring. Finding a community of people who “get it” even when they have a wide variety of experiences and lives lived is not something I thought I would ever find.

Though people talk about getting well & there is a section Staying Well, I’m curious as to what this actually means to other people and how they manage their expectations. I noticed some people refer to being well as ‘being like themselves before they got ill’, whilst others don’t express an exact aim.

My idea of being well has changed over the years. I was first diagnosed as an 8 year old child back in the late sixties. The doctors told Mum that the voices in my head & the sudden crying bouts were because I suffered from ‘nerves’ & I was given meds to calm me. Of course such things were not discussed back then & I was told not to talk about it to anyone, not my school friends nor siblings, just Mum. For decades after my idea of being well simply meant being able to hide my illness from others.

A number of events in my life caused my illness to worsen, until some years ago I became so ill I needed to be hospitalised for my own safety. This lead to my current diagnosis of Major Depression, Anxiety & PTSD. I’m no longer in that dark place, but each day is still a battle (though I can now believe in a future). For now only my siblings & one friend know about my illness, though some things they still don’t know.
So, what does ‘being well’ mean to me, it is ever moving goalposts. If you had asked me 5 years ago would I be as well as I am now I would have thought it impossible as I couldn’t envision a future. If you had asked me last week (during one of my down periods) I would have said my progress was all an illusion & I was fooling myself that things can get better.
For now my idea of being well is being able to believe that things can change for the better, that I will one day be able to manage the everyday things like housework, caring for myself & caring for my dog & maybe, just maybe I will even be able to enjoy myself.

Paw Prints
**I took the tip to give myself time to write my post by writing on a word doc & then paste it.

[Paw Prints]

Hello ER,

Oh lass you do sound exhausted by it all, I wish I could do something to help.  Know I am here for you whenever you want/need to be on BB, I do understand that sometimes the best thing can be to take a break from here.

I have no idea what you would need to provide to get the NDIS, but like when you went through the rigmarole of getting the disability pension I do think it might be worth the struggle in the longer term. I would also hope that already being on the disability pension might reduce the amount of paperwork needed.  I wonder if your psych could help you even with the simple things like filling out a form which can be nigh impossible to do when we are struggling.  Of course only you can decide if it would be best & perhaps pushing yourself to apply may be too much for you to cope with on top of everything else right now.  Just an idea but perhaps you could get a referral to a mental health social worker to help you manage any application.  

I do hope you did manage to get some sleep lass.  Remember listen to your body & disregard the clock when it comes to sleeping.  You don't need the pressure of "I should go to sleep at this time" which can be counter productive.  I laid down at 4:40 today & had a two hour nap, it was exactly what I needed & I have woken up feeling mentally much better than I was before.  

Sending you the gentlest of 🐻🤗

Paws

[Eagle Ray]

Thank you Paws,

I just watched Muster Dogs and enjoyed seeing the various doggies. I can't remember if you said you watch it? I have only watched it now and then. I watched the series Dog Park after that. It's only the second episode that I've watched but I quite enjoyed that as well for the different nuances it explores in human relationships. I easily recognised the park featured in the show which is Edinburgh Gardens in Fitzroy North. I went there a couple of times while in Melbourne and it's where a big dog jumped up on me actually. The first time I was there it was a Saturday and it was full of many people in gatherings having picnics which was so lovely.

My brain is profoundly confused. I did sleep this afternoon from about 3pm to 6:15pm. I am being flooded constantly with memories. While some are traumatic ones, others are just random sensory memories from across my whole life. Something about watching Dog Park triggered a memory of being at a party when I was about 21. Apparently it's normal in the first 1-3 years of DID becoming conscious that the brain gets flooded with a lot of memories. I think this is because the various alters were compartmentalised and having different experiences across the decades, but as the system starts becoming conscious of itself and co-consciousness increases, the memories spill over between various parts. It is very hard to focus as my mind is continuously flooded and I can also switch between alters several times in a day. A switch can take a few seconds or a few hours. When it's a few hours, I can be in blank confusion the whole time.

NDIS could be helpful if it helped to fund therapy as I am spinning lost most of the time, and it is stabilising when I do talk to my psychologist as most of the time I have no one to talk to about what is happening to me. NDIS could also possibly help me function with things like household tasks, but I am also scared of that because I expect that almost no support workers will have any idea about DID and won't know how to relate to what's happening to me. I have parts who are very scared of people, such as my 9 year old, and having someone come into the home would be frightening for her. If she's triggered she fronts in the system. She can literally go mute and that could happen if the support worker lacks sensitivity or is on the bossy or controlling side which is a trigger for her. I know you don't necessarily feel comfortable with people coming into the home, so you might be able to relate.

I am also exhausted because the histamine intolerance has come back, most likely triggered by the cold, and I haven't been able to keep many meals down. I am back to being very limited in what I can eat. I'm on an additional stronger medication for that now which helps a bit. A good thing today was I picked 6 peaches from the tree. I thought I better start picking as one had been clearly chomped since yesterday, probably by a possum. So although the ones I picked are still very firm, they are absolutely huge, much bigger than ones from the supermarket, and they still ripen after picking. I have put them in a bowl with a banana as bananas apparently help them ripen.

I'm glad you got to have your sleep this afternoon Paws and that you felt better for it. Do you usually do your day sleeps on the couch or the bed? My afternoon sleep was on the couch. I love my couch 🛋💗

Thank you for the hug and gentle hugs to you too,

ER

[Paw Prints]

Hello ER,

Yes I definitely understand your hesitation to have care workers in your home.  I struggle enough with people I know, strangers are out of the question for me at present.  I only managed having the builders here when I first moved because Woofa would sense my distress & he would place himself between me & the workers or if we were in a different room he would stay close & lean or snuggle.  He was also a good excuse for me to isolate in a different room as I would say it was for his benefit.  I haven't & won't let the chap who is doing my lawns inside my place, when we need to talk it is done on the doorstep.

I wonder if you have thought of trying for the NDIS just for extra psych sessions just to begin with.  You may find that the extra sessions could possibly help you to better manage the day to day things.  I realise you are very different to me in that you can strike up conversations with strangers such as with the lady with the little dog. That would be beyond me.  So it might be really worthwhile for you to try for home support, as it is possible you would get a kind & caring worker, if not then you are allowed to ask for a different worker.  Of course if you didn't find having the support workers helpful then you can always cancel having them come.  I don't see any reason to tell the workers about your DID, I think you could say you have anxiety & PTSD & let that be the reason for your responses to having strangers in your home, the average person would accept that I think.

A hot day here & my birdbath became the place to be this afternoon after I changed the water.  My juvenile Magpie was the first to arrive, closely followed by a parent.  They had a drink & then decided to just sit on the rim.  Well that didn't go down well with two Wattle Birds who wanted a turn.  Aerial acrobatics ensued with the wattlebirds trying to scare the Magpies away with some very agile flying & dive bombing.  The message finally got through & the Maggies debunked.  After all the kerfuffle the Wattle Birds simply had a quick drink & flew off.  The Magpies came back for a short while then I had about a dozen Fairy Wrens hopping about & bathing in turns.  

Tomorrow is a day of total fire ban with here under an extreme rating so I will have my grab & go bags ready early.  I know the time I don't bother to have them ready will be the time I need them.  There is a cool front with possible lightning due early afternoon which is the main danger as that is what started the recent fires, hopefully that will pass safely & by the evening everything will be back to normal. 

I hope you have had a better day today & managed enough sleep.

Huggily hugs

Paws

[Eagle Ray]

Dear Paws,

I can see how helpful it would have been having Woofa there when workers were there. Just his size alone would feel protective. For me the complexity is the way I switch and different alters are unpredictably present or not. They tend to be responsive to the energy of the other person present. With regard to the lady with the small dog, she was the one who struck up the conversation with me. Normally I sit on the bench next to the river that's hidden by vegetation to hide from people, but on that day for some reason I sat on a bench by the path. She asked to sit next to me and was friendly. Once someone feels safe enough and friendly I really enjoy and get a lot of meaning from talking with them, but it often takes them to approach me. I was saying to someone on another thread how I feel I'm in the category of a social introvert. I have one alter, my 14 year old, who is more likely to approach others. I realised when last in Perth that he's the one who loves to go up to people selling the Big Issue and buy a copy. I saw someone selling it in the mall and I literally felt him jump into the body and take me over there. He is totally in control and chatting away and all I can do is watch from the outside. He is the one who would give presentations when I was at uni as well, which was helpful as other parts of me are petrified of public speaking, but his hyper enthusiasm was sometimes embarrassing and a bit out of control. But he has such good intentions and I love him for that.

I feel for me with the NDIS that if I could do enough work with my psych to be better integrated and functioning in daily life, I may not need the additional help in the home. In the course of the day I fluctuate from moments of reasonable clarity to often prolonged stretches of extreme distress and mental disarray. I probably sound a lot more ok here than I actually am most of the time, because I instinctively mask and always have. I had such extreme distress today it was close to unbearable and I struggle with sui#$%&lity most days. I've learned this is very normal with 70% of people with DID making an attempt in their lifetime. But an advantage is that not all parts will be in the same state, so it's constantly reminding myself that there will be a part who is not feeling that way and doing everything to access that part.

I can easily picture the wattle birds coming down to chase away the magpies. I have seen them be aggressive many times. They are such dominant birds with their behaviour. I had one even have a go at me in my backyard once and I had to chase it away to tell it who's boss. I've seen them really go at the fairy wrens too who are expert and disappearing rapidly into thick vegetation to escape them. I'm really glad you had the fairy wrens come to the bird bath too. It's so lovely to see them enjoying the water. This morning I saw a flash of blue in my hibiscus tree and realised it was a male splendid fairy wren. He then jumped down on the lawn and hopped about.

I hope tomorrow is not too uncomfortably hot and nothing of an emergency nature occurs. But, yes, good to have the grab and go bags ready. Good on you for being organised. It's good to have the core basics - even things like toothbrush, change of clothes, medications etc, plus any important documents, cards, ID type things etc. Yes, hopefully rain comes with the cool front so that any lightning will be nullified if it strikes the ground. So far I have been lucky here but only a few months before I arrived there was a close call with the next nearest town under direct fire threat. My elderly neighbour here said people had their cars packed and were ready to go if necessary. It's one advantage of my asbestos roof that it is fire resistant from embers.

I'm off to watch Australian Story now as I like people stories, though if it is something too dark I'll sometimes give it a miss. But tonight's one looks like an interesting and insightful human interest story.

May you sleep well Paws and big hugs,

ER

[Paw Prints]

Hello ER,

Perhaps as a starting point you could find out exactly what you need to do to apply for the NDIS... with knowing what hoops you have to jump through first off, that would give you time/space to hopefully become more comfortable with proceeding.  It is ok to go slowly at getting everything ready to apply, doing it at your own pace on your better days rather than trying too hard to get it all done quickly.  I can't begin to truly understand what you are going through lass, the best I can do is to hold a space for you to talk or not about things as you need too.  The dark days are impossibly hard... I'm glad to hear you are letting the parts that aren't struggling as much to take the front seat & keep you on the road.  

I rarely watch tv these days & when I do it is usually just the ABC news channel.  Not watching means I don't know what I am missing.  I did try to watch the recent ABC show on the origins of the human species, but I kept forgetting when it was on.  I have a habit of doing that whenever I do want to watch something & it is making me less inclined to watch anything.  

Well today didn't get too hot in my neck of the woods, the cold front came through earlier than expected & was gentle & just a brief drizzly rain.  I didn't pack my bags.... hangs head. 😞 I do still have some things in my boot from when I did evacuate last month, just a couple of carry on cases with photo albums & such.  I have left the bags for the other stuff that I use day to day out & close to what would go in them so it would only take a few minutes to load up & go.  

Hugs

Paws

[Eagle Ray]

Hello Paws,

Yes, finding out exactly what is required with NDIS is a good starting point. I think what has thrown me at the moment is I've been contacted and encouraged to complete a study project from the past I thought I'd gone way past the time I would be allowed to complete it. That period of my life was extremely stressful and just going back there and revisiting it, it's really left me reliving a lot of difficult emotions and stress in my body as well. And this is all at a time where I have had extremely full on flashbacks from very early childhood surfacing and I was only just managing those. So I'm not even able to quite think about NDIS as I have to make decisions about other matters. I've asked to see my psych weekly as I've just not been ok and so we are doing that for a bit anyway. It does mean I'll run out of my Medicare rebated sessions sooner. I'm just so overwhelmed and confused. I try to take heart in the knowledge that often chaos proceeds greater clarity and a new direction - I hope.

I usually watch minimal TV myself. For some reasons most of my channels have dropped out too. I have wondered if it is something to do with the birds often sitting on the aerial, especially those mischievous ravens. I do get ABC and ABC Kids (I love Bluey 🐶), SBS and NITV. I did see the first of the origin of the human species one that you mentioned and it was quite good. But like you I do forget when things are on or I don't remember to watch later episodes and then I lose touch with something. So I'm not a consistent viewer either. One thing you can do is chase things up on ABC iview, but I know you can have buffering issues.

I'm glad it didn't get too hot and that the cold front was on the gentle side. Don't worry about not packing your bags. Perhaps you had a premonition/feeling it was all going to be ok. It can be hard to think to organise oneself sometimes. The fact you have the bags ready and know you can quickly throw some things in is good. I guess it's another 1-2 months of the more uneasy time with potential hot weather and fire conditions, and then it will be less of a concern. It's good you keep an eye on the news and updates anyway, and you can respond on the basis of anything that does come up.

It's super still here with gentle ocean sounds in the distance. I'll sleep with the windows open tonight. I hope you are having a lovely sleep Paws, assuming you are in the land of nod by now 😴

Hugs,

ER

[Paw Prints]

Hello ER,

Oh lass the last thing you need at the moment is to have something you weren't even expecting just pop up out of the blue.  I'm glad you are able to see your psych weekly as you definitely need a lot of support right now.  As for the study project I think the simplest question to ask yourself is 'will doing this bring me joy?'  Just because you once worked on the project doesn't mean you need to continue it, you are in a very different place now.  If it is something that you think would be beneficial to you in some way then say yes & see how you go with it.  

Yes crows on the tv aerial can result in lost reception as often happened at my old place... after the 3rd replacement aerial it ended up I had to get an aerial made of stronger metals so it wouldn't bend under the weight & playing of the crows.  I never understood their attraction to my aerial given there were plenty of tall trees, not to mention the power poles.

There was a meme I read yesterday which read 'there is a thin line between happy clutter & depression squalor'  I looked at my house & thought I'm more in the 'there is a thin line between depression squalor & hoarders healthrisk'.  

I hope you found some peaceful moments today.

hugs

Paws

[Eagle Ray]

Dear Paws,

Thank you for your kind support and words. I am really stuck with what to do with the study project. Your question about whether it brings me joy is a really, really important one. It's a very compromised and difficult situation that is really too long and complex to explain here. The original impetus for the project brought me joy. However, the environment of the institution I was in absolutely did not bring joy. I had a hostile and morose primary supervisor who hated her job and took that out on me. I had a secondary supervisor who was very kind though. The institution itself bullied me at one point over something that was totally irrelevant to me, right after both my dad and a friend had died. I was already beyond exhaustion after caring for both my parents with significant care needs. I nearly quit at that point and wish I had. Then I was trying to push through the whole thing leading up to my mum's death. Technically I only have to do corrections to complete the project, but it's the really nasty comments of one of the examiners I have to get past who took personal exception to my work, even though his close colleague was another examiner who passed it without any requirement for revisions, showing how fallible and subjective the process is. The hostile examiner tore what I had done to shreds and to complete the project I have to go through and respond to each and every one of his irrational remarks (about 20 pages worth of them) and make significant corrections. I was living with my mum when I got this feedback. It was like the final thing that broke her because she was upset for me when she became aware of these things and about 24 hours later went into heart failure then died. So the whole thing for me is acutely distressing to revisit. At the moment I just cry frequently and feel desperate in that I don't know what to do. It's work I produced under incredible duress and as such it wasn't how I wanted it to be. It's so much more complex than that but it's too hard to explain it all. I just feel so sad for my idealistic self that started with so much hope and was progressively smashed to pieces throughout the process. I had hoped to help others through the project, but the thought of trying to finish it now within imposed limitations that took me so far from my original purpose and goals and left me feeling restricted, makes me feel that it might damage my mental health more to try to finish it now rather than just letting it go. I feel in pain whichever direction I go in.

So, anyway, I feel pretty emotionally distressed at the moment but I hope you are going better. Please don't be too hard on yourself about clutter. Since I got back from my last visit to the city my suitcase is still sitting near the front door - with stuff in it. I collapsed on my couch with a cold and just haven't been able to deal with anything much since. I am surrounded by stuff as I sit here at my computer. I honestly think that sometimes all we can do is let stuff go. I think I've even given up caring if anyone else sees the disarray I am in, as it is a truthful representation of my state of mind. So I think you are doing your best Paws. I wonder if getting a puppy would be ok even with the clutter, as puppies are chaotic anyway, and perhaps you can just laugh at the chaos everyday. I remember seeing a TV show once with a woman who was looking after a child and worried because she wasn't used to kids. They were cooking in the kitchen, preparing cake mix, and it got dropped on the floor. At this point she gave up worrying and the kid showed her the way, turning the cake mix into something to play with and get totally messy and covered in on the kitchen floor. That also makes me think of the scene in the movie Parenthood where the grandma says she prefers the chaos of the rollercoaster over the orderly merry-go-round. Then at the end of the movie, the youngest child of the family climbs onto the stage during his older sister's school play. Chaos ensues and the set starts to fall down and everything goes out of control. Finally the dad who is a worrier and perfectionist, played by Steve Martin, realises it all doesn't matter and feels as if he is on a rollercoaster and just let's go, seeing the hilarity of it all.

I'm not sure if any of that helps. I'm a bit delirious at the moment. Anyway, I hope you have had some peaceful moments and nice times observing the birds in your garden. Sorry if I just rambled too much 🙈

Hugs

ER

[Paw Prints]

Hello ER,

Sorry I wasn't here sooner... I've been hibernating in bed.  

Lass you are already dealing with so much, my thought is that just letting go of the project & closing the door on it would probably be best for you.  Before they contacted you about it you had already consigned it to the past as you thought it was too long ago to now be able to finish.  It is bringing up a lot of distress for you & I think that would amplify with every correction you would have to do, especially knowing a different examiner passed it as it was.  Plus you have recognised that the circumstances at the time caused it to not be the work you wanted to produce.  I do think you making the decision to not proceed would actually be good for you in another way... it would finally be your decision... rather than just the circumstances of that time that ended it.  You are still young lass & so if you want you can always start afresh later in life... more & more over 60s are doing university courses these days.  Your younger self may have had idealistic dreams... your older self will have wisdom & more understanding of life.

I'm not only out of bed, I'm dressed & I went to the shop to get milk.  So today is already a major improvement over the last few days.  I have thought of actually putting my name down even if everything isn't done here, but... & it is a big but... over the last few days I have come recognise just how unfit & unsteady on my feet I have become since losing Woofa... I'm struggling to walk even very short distances, even with my walking stick... so I definitely need to do something about that first.  It is a catch 22... the less I do results in the less I can do... & vice versa.  I had already started trying to improve my health this year anyway & one thing I am on track with is not buying or eating munchies... biscuits, chips, lollies etc.  So hopefully that will not only help my overall health, but also help with getting fitter again.  

 hugs

Paws

[Eagle Ray]

Dear Paws,

Please don't feel you have to apologise for not being here sooner. It is absolutely fine to hibernate in bed and do whatever you need to do. There's never any obligation to respond. Sending you comforting hugs Pawsy as I know sometimes it can be a lot dealing with things and hibernating in bed is the place to go.

I remember you mentioning previously about having some difficulty with walking, such as when you are taking your bins out. It did occur to me that there could be some challenges with a new puppy, given the high energy of puppies and keeping up with them. I totally see the catch 22 because I know how much things improve for you with a doggy there. I'm quite sure it would be good for your mental and physical health. However, the demands of a new puppy could also be quite challenging to begin with. Another option could be considering to adopt an older dog who is past the stage of training etc. However, I know that is not the ideal you were hoping for. I've been looking at dog shelter websites online again recently and they do usually give a mini bio for each dog, including describing their temperament, needs and energy levels. I don't know if perusing websites of similar places in your area would give another perspective? I do know that is something different from the Red Setter or Field Spaniel you were thinking of, and those breeds are not too likely to be found in a shelter.

Another option is to get out there and visit some breeders and/or dog shows as you have mentioned before, which may help clarify things. I have often found with decision making that it helps to talk to different people and investigate the various options in order to come to a clearer insight about what is best. I do know, however, that getting out to places and talking to people can be challenging too. I have been trying to make a decision over the past couple of weeks and during that time I have spoken to my psychologist and twice to Lifeline, as well to someone at the institution where I was previously studying. Those conversations with others did help me to reach a final decision which I feel at peace with now (which is for me to not complete the studies). The other people were really good at holding space for me, not pushing me in any one direction but helping me to work through my own feelings and thoughts. But I had to go through that limbo phase of not knowing which way to go for a while and it can be painful in that space. I found I just had to keep doing something to find out more about how I really felt intuitively inside, and make the best decision for my mental and physical health.

I wish I lived near you Paws and that it was possible for me to drive by and pick you up and take you along to see some Red Setters or Field Spaniels and talk to the breeders. I would love to support you in that. I do wonder if there would be any way to get some support, but I know it needs to specifically be support that you feel in control of. I am similar to you in that I don't feel comfortable with just anyone coming into my world. I'm just wondering about what options there may be, such as a social worker or even considering NDIS. The NDIS is about supporting a person with their daily living and functionality to live their best life. It obviously involves paperwork etc and it depends on whether you are deemed someone who would qualify. But you may do with the support of your GP and on the basis of your diagnoses.

Those are just some thoughts anyway. I've written a long post again. I don't know how not to 🙈 Well have a lovely evening Paws. The galahs are calling in the distance and it's a sunny, breezy afternoon here.

Take care and big hugs,

ER