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,

I'm glad you have come to a decision that feels right for you.  Sorry if my thoughts felt like I was trying to push you to a certain decision, it wasn't meant that way.

At the moment I know I can't provide what a dog needs, even an old slow one.  I am struggling with not just walking/balance but my heart issues, it has all worsened so much over the last 6 months.  I've been giving myself a stern talking to that hiding in bed & tears won't change things.  It didn't work yesterday as I ended up in bed all day, but I did finally get up about 4am today & I have been doing small bursts of cleaning through out the day.  Hard as I'm finding it all, I will get fitter as I'm refusing to just give up on my dreams of getting a new fur friend, it is all that is keeping me here.  

Thank you for your offer to virtually drive me to see breeders & dogs, that made me smile.  I should warn you that I would virtually fill your car to the brim with every dog we saw.  As they are virtual dogs then there would have to be some Great Danes in the mix, you might want to wear waterproof clothing for the rain of drool that would ensue.

I hope you are feeling up to getting out on your walks

hugs

Paws

[Eagle Ray]

Hello dear Paws,

You don't need to apologise for anything. I did not feel you were pushing me in any direction, and your question about asking whether completing the study would bring me joy was very helpful, as I was able to reflect that no it wouldn't. I only mentioned those examples of others such as the helpline phone calls and my psychologist holding space for a decision, because I thought it may help you to reach out to a few people as sounding boards, just to take the pressure off struggling away so much on your own. I was trying to indicate that others won't necessarily pressure you into a particular outcome but can just be there for you. I have slowly learned to realise myself when I am really struggling with something and that I do need to connect with other humans to alleviate the pressure I can feel under. And I've learned to let out the tears too, on both helplines and in front of my psychologist, something I wouldn't have done a few years ago. It's hard to put into words the value in finding spaces in which you can be vulnerable with others and it is okay. So I guess what I am saying is you don't have to go it totally alone. I know all too well the struggle of trying to do everything alone and also going round and round in my own head. I've found gradually learning to integrate reaching out into my self-help tools has helped mobilise me and make progress when I was otherwise really stuck. It's something I've learned I can do gently when I need it and there is something stabilising about it that recalibrates the mental state I was in previously.

You do sound so very down Paws and I can hear how much you are struggling. I am wondering if you can move from being stern with yourself to orienting to a new day in terms of what you can do just for you that day that you would really enjoy? Is there anywhere at all you feel safe going for a bit of a walk, even a park or lake or by a river in another town, such as your big town? I know you do feel vulnerable, so it has to be something you feel okay with. I have found just being out in the fresh air, seeing the birds and moving my body can be very helpful. It doesn't solve everything and I can find I'm still struggling away, but it does shift something and help in the processing of whatever I'm dealing with. Another thing that helps me, and this may or may not be helpful, is just exploring and understanding the specific challenges I have. I find researching to understand myself helps me see potential ways to problem solve difficulties that I face. I guess I must be asking questions of myself, because I go down various rabbit holes of investigation - reading books, watching YouTube videos, listening to podcasts etc. These activities have been life saving for me, as I've discovered other people who are going through, or have been through, similar things, as well people working in relevant fields with new and insightful ideas. So I guess I could say I've sort of turned the darkness I've been struggling with into an adventure of discovery, to understand myself better and improve my health.

I don't know if any of that helps. I guess I am trying to help you see some potential pathways through, which don't have to be the ones I've mentioned, but more that there are various options even when sometimes it seems like there are very few.

I understand you wanting to gather every dog, including some Great Danes! Both times a visited a shelter in Perth I went round and talked to every single dog there and hung out with them for a bit. I hoped that just giving them a bit of loving attention would make things a little better for them.

I did have a walk in my version of big town today around the river. It was hotter than I expected. I heard some Purple Crowned Lorikeets high in the tree canopy. They are very cute birds. I'm struggling with really debilitating histamine intolerance symptoms and then a low grade migraine this afternoon, so was feeling down myself on the way home, but I am okay and about to go and put my oven on. Going to bake some chicken and sweet potato.

Gentle, comforting hugs,

ER

[Eagle Ray]

P.S. Did you see the baby rhino on the ABC website today? I know you love baby rhinos. He is so cute! He was abandoned by his mother but the community have banded together to fund the care he needs. There is a short video of him running about that I thought you would like.

[Paw Prints]

Hello ER,

Thank you so much for the rhino heads up 🥰  I hadn't seen it... isn't he a gorgeous little lad & yes I have now watched it more times than I will admit.  

You are right that having a good understanding of or health issues is beneficial in so many ways. Having a mini stroke in my 30s was the first time I went down the rabbit hole trying to understand it better. I was very lucky after my heart attacks that while I was waiting in the cardiology outpatients for my first follow up I was pulled out of the queue & taken on by a private cardiologist yet not charged as she treated me as a public patient.  As a female cardiologist she had become very aware how women weren't given treatment that took into account of how gender affects both the heart attack & the post treatment support.  When I explained how I had gone to a different hospital (near home) a few times in the preceding month yet had been sent home as nothing showed on the ECG & they didn't do bloods, she wasn't surprised given my gender, age & good blood pressure.  She was brilliant in how she explained to me clearly why my heart attacks didn't show on an ECG, yet showed in the bloodwork & how much damage had been done. Over time she was again brilliant in how she explained how the damage is causing me to develop an enlarged heart & why I have developed arrhythmia.  We had good discussions about the medications I needed & we adjusted the original ones to ones that worked better for me.  One thing I do know is if I lose the extra weight I am carrying it will help my heart not have to work so hard whenever I do try to do things & that will help me do more & get fitter.  Getting fitter & losing weight will help with my arthritic/damaged joints, building muscle strength helps support joints.  Being on a psych med that causes weight gain doesn't help, but I can't blame that as I know I don't move enough & have basically stopped moving since I lost Woofa.

I have had the same GP for nearly a year now (previously they have come & gone in a much shorter time frame).  She is good in that she hasn't nagged me about my weight, yet as I have raised it recently she is suggesting different types of exercise I can do that are suitable for someone with my health issues.  If she does stay longer I think she may be a good & helpful support person.  I know long term I will be looking at heart failure, all I can do is try to slow things.  Of course I could be hit by the proverbial bus before then  😂😂 

Baked chicken & sweet potato sounds yum.  I hope the migraine has cleared & not worsened. 

hugs

Paws

[Eagle Ray]

Dear Paws,

I don't think there is any limit to how many times one can watch baby rhino videos. It is very good for the soul.

You have been through a lot Paws and all of that is challenging with regard to managing your health and daily activities. It's really good that you have a GP you like who, on the one hand, doesn't nag you, but at the same time has helpful suggestions when you raise concerns. Hopefully that doctor will stay and provide ongoing support.

I'm really glad you had the female cardiologist who had the wisdom to investigate further. A year before my mum passed she went to hospital with chest pains and was sent home following an apparently 'normal' ECG. She felt even the ambulance officers were not taking her seriously. A year later she went into heart failure and they were able to identify after she passed that she had experienced an earlier heart attack, almost certainly what she had previously gone to hospital for. I was not happy with her GP who even ignored the high C reactive protein on her blood results about a week before she passed with only a watch and wait approach. I wanted her to change doctors long before that but she wouldn't. If she had received appropriate medical care things would have worked out differently. I'm really glad you had the right person at the right time and that she was able to give you such helpful information.

With regard to concerns about future health outcomes, does it help you just to be in the moment as much as you can, whether it is observing the birds in your garden or perhaps gently doing the exercises the doctor suggested and feeling into your body in a supportive way? I don't really know how to express that any better, but on Wednesday I had another session with a Bowen therapist which involves very gentle movements of the fascia and it was calming for the whole nervous system. It's like it really teaches me to have presence with my body and it's very healing. I can reflex quite quickly back into being hypervigilant, but just having these periods of time where the body learns peace really helps my health as a whole, and I find the more this happens the more the body gradually learns to settle which has flow on effects to all the systems in my body.

I know animals are so healing for you, so I think watching animal videos and tv programs is a great thing to do, and I do hope maybe you can find some contact time with animals somehow. Have you even thought about looking into a support animal or assistance dog? I don't know much about it but I understand if you have a diagnosis and referral from your GP, you can get an assistance dog trained and tailored to your needs. I would think your health diagnoses would qualify you. I just thought that may be a supportive way of getting help to get the right pet for you and your GP could support you in that. It's just an idea, so please ignore it if it doesn't feel right. I just thought of it as a way to ease the process for you in terms of possibly getting a new furry friend.

I hope you have decent weather and that you are enjoying the autumn. It has been mild, pleasant and breezy here. I'm about to head out for a bit of a coastal walk I think.

Hugs,

ER

[Paw Prints]

Hello ER,

My cardiologist was scathing about how so many women were being treated when they presented to ER with chest pains.  Apparently back then doctors were only being taught the symptoms that men commonly presented with (I hope things have now changed) & women so often have very different symptoms. 

Feeling that your mum wasn't given the appropriate medical treatments would I think be woven into all your feelings relating to her & your losing her, making it so much harder to deal with.  Even her refusal to change doctors must in it's way be one more thing tangled in.  I do understand how being brushed off regarding her chest pains may have influenced her not pushing her GP about things though.  After being sent home the first time I went in with chest pains with the doctors dismissal of what I was experiencing ringing in my ears, it took a further two weeks of increasing frequency of chest pains before I would let a co worker call another ambulance.  I think we both have learnt over the years that doctors are not infallible & that we need to learn all we can about our own health & be willing to advocate for ourselves.  

I'm truly not worried about the possibility of my heart failing. I have made it not just past the 5 year mark which is how long on average people with my conditions last, but I am now past the 20 year mark.  Mum used to say only the good die young so I probably have decades (centuries???) left to go.🤣  My main reason for wanting to lose weight & get fitter is simply that I am finding it harder & harder to physically do the basics such as walking or standing for anything more than a few minutes, I'm even having to shower sitting down.  My heart objecting to the stresses I'm putting on it is just a small part of my building frustrations with my mobility.  

I have thought about training an assistance dog for myself, but I don't feel it would be a good fit for me yet. Woofa acted  as my PTSD dog even without official training & having him waiting in the car was a big help as

I would simply leave a shop if I began to be overwhelmed or felt unsafe & ground myself with him.  He was also good at sensing my moods/needs at home & would stay with me.

On a happier topic.... I had my first Kookaburra 🐦visitor to my bird bath yesterday.  I think I need a deeper bird bath for it though.  

How are you doing lass?  Does seeing your psych more frequently feel like it is helpful?  

Hugs

Paws

[Eagle Ray]

Dear Paws,

I'm not sure things have changed as much as would be hoped for, given my mum died in 2020 and it was the year before that she had the heart attack. In your case it is good you have your medical history to back you up now, so medical practitioners will take appropriate care in understanding your health conditions. With mum, her reluctance to change doctors was very much tied up with the level of fear she lived with, with her own CPTSD. The unknown was more frightening than the known. She had been through really shocking medical negligence in the previous two decades and was beyond exhausted. My brother becoming hostile towards her just before her going to hospital with chest pains is likely what precipitated that episode, as she had called me the night of my brother's visit in dissociative shock and distress. As usual, I was the one trying to hold it together for her, and then went to live with her to care for her in that remaining year during which she had multiple other health issues, surgeries etc. It's extremely painful for me and I cry writing this. I had spent a lifetime trying to keep her alive and I couldn't do it in the end. I am T writing now, who was her protector. What I know is emotional healing is so important, and she really, really needed that. That is what I am learning for myself, so I can heal.

With regard to prognoses, I have learned to not take a set amount of time given by a medical person as fact, in terms of longevity. I think your 20 years proves that. I was told in 2020 my liver would fail in about 10 years because of the autoimmune disorder I was just diagnosed with. When I first moved here I was very ill. But I researched out of the box and found someone online who had reversed a similar diagnosis through diet and the microbiome. He had been told his liver wouId fail and there was nothing that could be done. To the surprise of doctors, his liver readings completely normalised. Inspired by his story, I sought out an evidence-based naturopath and switched to a liver specialist who worked in the same clinic as him. Through the naturopath's treatment my liver readings went from worsening to normalising and my liver reversed out of the fibrosis it was starting to form. I know all of the physical health conditions I carry are strongly linked with trauma, so I continue to work on healing the primary sources of how my body became dysregulated. We as a dissociative team are slowly getting there. Even if you are living with that possibility of heart failure Paws, don't underestimate the possibility that emotional healing and self-care can play in repairing much of the body. We can't necessarily repair everything, but I think we can find a measure of peace. Of everyone in our dissociative system, I'm the one who often has the hardest time seeing that, so I am trying to learn from the others who can see hope and joy instead of just being in survival mode. Even if you are not a dissociative system as we are, there will be parts in you that have resources you may not be aware of, and parts that hold some inspiration and wonder. Your love of nature and animals is so clear, and that is why I prescribe to you 20x baby rhino videos per day 😂 (I wish there was a rhinoceros emoji).

I did look up about assistance dogs and PTSD is one of the things Assistance Dogs Australia use as criteria along with disabilities. So if you ever did want to try that path you could always make inquiries with them. I can imagine that an advantage would be that the dog they seek to match you with will be suited to your needs in a sensitive way. I know you don't necessarily need to go that path, because Woofa showed he was already such an assistance dog. I guess I was just thinking that because of the vulnerability you feel right now, it may be a supported way of getting that help. But it has to be when you feel right about the possibility of getting another fur friend.

I'm back to seeing my psych fortnightly as I realised I couldn't afford weekly. I am ok but processing a huge amount. ER gradually coming into the body now writing this. I am hoping T will front when we see our psych on Friday as he needs the most support. We are working on mapping our system. We may disappear over the next few days from the forum as we know it will take a lot of effort. We are trying to understand all the parts in depth and build a picture of how to go forward.

Yay for the kookaburra! We have one sit on our fence sometimes. They have so much character.

Hugs,

ER & T

[Paw Prints]

Hello ER,

Oh lass you do sound so very low.  I know I can tell you that I'm sure you did what you could for your mum & no one can do more... you didn't fail her lass.  But that is just a rational, logical way of looking at everything & it doesn't take into account your emotional & physical responses which are equally valid & are much harder to reconcile with.  For you it isn't just that final year, but your entire life with your mum that you are trying to find peace with & that has you looking at the hurt etc again which is so very difficult & distressing to do, especially for you with your different alters each holding different parts & different reactions.  

Despite how distressing for you the original appearances of your alters has been, I'm hoping that as you are trying & learning to support each other this will help you long term to hold safe spaces for each of you to process & come to a place of understanding & compassion for yourself.  Hindsight can be a cruel thing as we look back & pick our choices & actions to pieces... we wouldn't do that to someone else who did their best... we need to learn not to do it to ourselves & yes it can be very hard to show ourselves that kindness & understanding.  You also have your parents issues & how they affected you to work through. All of this is a lot for one person to deal with & it will take time lass for you to find a path that works for you... but just from knowing you on here... I have no doubt you can & will.

Gentlest of hugs

Paws

[Eagle Ray]

Hello Paws,

Thank you for your kind words. I wasn't going to come here tonight as I've been trying to do other things, but feeling low as I found out the neighbour across from me is very sick. I knew he had prostate cancer from at least six months ago, but like many men with it he was doing fine up until recently, continuing to work and looking the same. Then today I saw him after he'd put his bins out and he could hardly walk and had lost so much weight. He looked extremely unwell. I asked if he was ok and he said he's really not good but didn't want to trouble me with it. I said he can contact me if he needs anything from the shops or any help. He's been one of the grounded, good people here in these units and it quite emotionally affected me seeing him like that. So I had a bit of a cry this evening and just felt sad. I know you are a sensitive person too and are affected by such things. That neighbour and the one who lived next to him but has now gone to a nursing home in another town have been like stable people for me. I miss my other neighbour so much and I'll miss the present one too if he isn't around much longer. I think I just needed to express feeling sad.

Yes, you are very right, that we are so often hard on ourselves in hindsight. I still replay the things I wish I'd done differently, because often later is when we see a situation more clearly, but while we were in the situation we were just surviving through it. It's so clear to me now my mum also had DID, as she said a few times that she had conversations with voices in her head. I just thought that meant the internal dialogue that many people have, but now I can see so clearly how she was switching between alters at different times. She was always really dissociated. I could try to speak to her and only see a vacant stare back. She also couldn't remember things she'd said and done, even thought they were often quite dramatic things. I think she had a lot of amnesia and was dissociated from me from birth. She once told me she left me in a pram as a baby in the front yard and went inside for a while, then came out later to find me lying on the ground. She had that emptiness in her when she told me. It's not a normal thing to leave a baby unattended outside and it was weird she told me about it 40 years later. But it all makes sense now and of course I only wish she was still around so I could help her, because I'm working out how to help myself now and how this DID thing works.

Anyway, I do hope you are going ok this week? I thought of you today because early this morning the kookaburras were all calling together. I've had little Splendid Wrens hopping about in the backyard. I sat out there with a cup of coffee this morning and it's just so nice to be outside. Someone the other day was telling me they sleep on their balcony in their swag so they can look up at the stars and wake up to the trees and birds. I think that's such a great idea and I'm thinking I can sleep in my backyard sometimes. I will probably get climbed on by a possum though. They are loving my fruit trees at the moment. I don't think I'm going to get a single pomegranate this year. The birds are loving the fruit too. There is a branch growing so low on the peach tree that it's scraping the ground, so even the King Skinks are getting some bites out of the fruit. They are under there a lot. I have 11 peaches in my fruit bowl at the moment, though they're much smaller than the first ones I picked which were ginormous. I hope you might be seeing some interesting wildlife.

I hope you are getting some lovely autumn weather. I find it one of the most serene times of year. At the moment there is the gentlest of breezes and I can hear the ocean at the river mouth through the window. It makes me think about the ebb and flow of life.

I hope you are peacefully sleeping tonight where it is actually tomorrow now for you.

Hugs,

ER

[Paw Prints]

Hello ER,

That is sad news about your neighbour lass, it is natural you would find it upsetting, you are a caring soul.  

The last few days have been lovely here starting off with valley fogs.  This morning there was a wall of fog that stopped just inside my back fence & I could see clear sky above it, it was like looking at a box of fog.  As it is clearing it has flowed back into the valley & oddly the sea fog is still higher than it in the distance.  I don't think I would want to sleep on my verandah as nice as it might be to wake up to nature that way.  I'm sure  if I tried it I would have a snake or two 🐍 wanting to use me as a human hot water bottle.  The sun is just breaking over the trees on the higher ridge & it is illuminating the left over haze from the fog making a magical effect.

I've been up for a couple of hours now & I'm trying to be motivated enough to do something useful.  I might just watch animal videos for a little while before the internet drops out.  That might brighten my mood & give me enough of a lift to do things.

I hope you are feeling a brighter today

Hugs

Paws