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 & Croix,

Lass I'm so glad both that you reached out to the Blue Knot Foundation & even more so that you found them helpful & grounding.  I'm so sorry the biopsy doctor left you feeling like that... yes they need to maintain a distance, but they can still show some empathy & humanity...  I hope she wasn't ringing to delay your biopsy, it is already a wait not being until the 11th & naturally you want it done & answers soonest.   Remember... as you reminded me... it's ok to have a cry if you need to.

I'm thinking the kiwi beak to bottle ratio may just be a cunning tale told by a certain walrus to direct everyone away from the true reason the inebriated kiwis end up in that state... by which a clue may be that said kiwis are only inebriated on one particular iceberg... inhabited by a certain walrus who has tusks just made to pop the top off the larger bottles...  After all even a sober kiwi would have difficulties holding a large bottle, let alone getting the top off...  

This morning when the sun was shining on my (very in need of a good clean) lounge windows I noticed a lot of foot/paw prints going up the glass... I'm not sure if they are frog or lizard prints & I can't think of any other creature that might make them.  From the quantity it looks like a great party was held by one & all.

Mid 20s here today & I'm already grumbling about it being too warm... at least I managed to get a bit done early.  Even if the house doesn't look like I've done anything, I am taking today as a win.

Do be gentle with yourself lass.

Hugs

Paws

[Eagle Ray]

Hello Paws and Croix,

Paws, I think you are onto something. It is true that the particular species of kiwi who lives on the iceberg has a beverage consumption unlike kiwis anywhere else in the world. They are in fact known scientifically as Kiwi inebriatus. I think you’ve solved a mystery in finding that the tusks of a certain walrus are designed perfectly for bottle opening. No wonder this population of kiwis remains upon the iceberg and has not expanded elsewhere.

It would be fascinating to know what creatures have been climbing across your windows. It sounds like something with an ability to cling to vertical surfaces, so frogs or lizards sound like possible contenders. Apparently mice can climb up vertical surfaces, but I wonder about small native animals too such as marsupial mice. There is one here called the Mardo that’s sometimes mistaken for a common house mouse. I just looked up it’s distribution and it’s also found in parts of Victoria. I hope maybe you will see some wildlife soon on the wildlife cam.

The doctor was not ringing to delay the biopsy but to check the radiology clinic had got me to make an appointment for the biopsy. I tried to find out more info about it. From what she said I think what can be seen on the scan is thought most likely to be benign, so that’s semi-reassuring. However, she is the kind of doctor I think who insists on biopsies. I’m so unwell at present and struggling so much that I’m not convinced the biopsy is a good idea. It’s a minor procedure with a local anaesthetic where they then insert a needle from various angles to extract tissue. But I just don’t want to deal with it at the moment. I’m going to speak to the hormone specialist doctor in a week for her opinion, as she is far more attuned and present with me and I trust her far more. I realise too I’ve had so many things done to my body against my will and I’m just over it. I feel taking back control of what happens to my body is actually better for my health. I have a suspected benign tumour on my liver as well that showed up on a scan, but the liver specialist is not concerned and no action was considered necessary on that. Basically I am trusting my gut and only want to deal with medical people I feel comfortable with.

The weather here is cold and blustery. There were gale force winds all night and the apparent (not actual) temperature at the nearest weather station went below zero at times. I’m under covers in bed now. I’m trying to rest and feel a bit better. I hope you may have some entertaining spring bird activities in the warmer weather. On my recent visit to Melbourne I enjoyed seeing a variety of birds at a coastal location. Some are totally new to me and some are the same as here, such as the red wattlebird, but their calls sound slightly different just as the magpie calls have a different quality to them.

Hugs,

ER

[Paw Prints]

Hello ER,

You are having such a rough time at present I can understand why having the biopsy feels like one straw too many to have to cope with.  I know all the arguments about having it done & getting an answer being the sensible course of action, but I think going with your gut & doing what seems best for you is just as valid.  From memory your visit to your hormone specialist is Tuesday so not long now to wait to have someone to talk it all over with in r/l.

Another over long sleep session.  I've given up trying to stop it happening as all that has done is make me more stressed & anxious.  I just need to allow myself time for everything to settle back to a better balance.  I did manage to get a lot of small/short bursts of doing things during my last being awake period.  Anyone walking in & looking at the state of my house right now wouldn't think so, but at least I can see an improvement.  My next task is to clean my fridge, inside & out.  It is only a small bar fridge so isn't that big a chore & will be broken down into a few small bites to do, but will be one more thing ticked off my list.  It is very hard to do these things as I'm battling one side of my thoughts which are convinced bad things happen as a consequence of my cleaning.  I know it isn't rational, but at present it is the stronger thought & hard to push past.

I think Friday was sunny here, but there is rain forecast for the weekend, which is probably the weather you had reaching here. It must have been a shock to the system for you to get such a cold burst after all the warm weather you have been getting.  

I've been meaning to mention & keep forgetting, did you see the Gardening Australia show the Friday week ago?  It had a story of a photographer who takes her photos of plants/animals & makes lovely still life collages of them.  I thought you might like to see it & perhaps it might give you some ideas.

Gentlest of hugs

Paws

[Eagle Ray]

Hello Paws,

Yes, that sounds like a good idea not to put yourself under pressure with the sleeping and just let your body do what it has to do to restore and rebalance. The thoughts that come up with cleaning the fridge must be quite difficult. I wish I knew a solution. Do you find it eases after a while? Would recalling past times you’ve done it and everything’s been ok be helpful? I know it is like two parts of the brain doing different things. Go gently with things. I wonder was it easier when Woofa was there? I have noticed how much difference companionship makes to my mental state. I’m trying to practise imagining the presence of calming people or animals at difficult times and if I can really go into it, I can bring back the feeling of calming connection which helps me in the present. Not always easy to do but I’m working on it.

I came down with a nasty bug and fever plus really horrific migraine from Thursday night. I’ve been lying down the past two days myself. What I did do for about an hour and a half this afternoon was I took a sleeping mat I’ve used for camping and put it on the area of lawn out the back. I find lying down outside seems to be so much more restorative for me than lying in a bed. I have the trees and plants next to me and the birds around. I wonder if something like that would be helpful for you Paws? I don’t know if there’s a suitable place in your garden but you would want to feel comfortable and also not get sunburnt depending on the time of day. I just find nature and outdoors seem to do much more for me than being indoors when I’m unwell or need to rest. I know research into forest bathing, developed in Japan, has shown plants release compounds that are really good for our health and actually change things in our body.

I didn’t see Gardening Australia from a week ago. It’s one of my favourite shows with such lovely presenters and pleasant to watch. I may be able to see the segment on the internet on the photographer who makes the collages which sound lovely.

Right now the Common Bronzewing pigeon is doing its deep call. It’s quite a calming and reassuring sound. I feel like I’m emerging out of what was a hellish combination of fever and migraine and now thankfully starting to feel better. I’m pretty sure I won’t return to the city this week though. I’m just not up to it. I will do Telehealth with the hormone specialist instead and cancel the biopsy for now. My appointment with her is actually Thursday but I was getting dates mixed up the other day. There is someone else to feed fluffy cat though I’m sorry I can’t be there to give her cuddles.

I hope the wet weather coming your way is not too wild. It’s settled here today. Take good care Paws and gentlest of hugs to you too,

ER

[Paw Prints]

Hello ER,

I think you are wise not driving into town for the appointment as the stress of the drive is the last thing you need right now.  As much as Fluffy Cat is good for you, the idiots on the road wouldn't be.  Oh lass you have my complete sympathy, migraines are bloody awful to say the least.  I truly hope that like me once you pass menopause they become as rare as the Dodo with the end of the hormonal influence.  Though I'm guessing this one had more of a stress/ill health component as you seem to be going from one bug for another with barely a break between.  I'm trying to remember if you had covid a while ago & if so whether that might be acerbating all your other ills.

I've heard about the forest bathing in Japan & I believe the Nordic countries have something similar.  It's good you have an outdoor area where you can be close to nature without having to leave home.  I do find being in nature can usually be beneficial for me, but not when my mind is being paranoid/delusional as it is now because then I find being outdoors threatening.  At least these days I can tell these thoughts are "unhelpful" as my Psychiatrist used to say & with my meds to help I know I can work through & out the other side.  Also now I can open the curtains & look outside which is a big improvement from many years ago.  I did manage to scrub my fridge inside & out today, so tomorrow is pulling it out & cleaning behind & under it.  

Despite the frequent showers this morning there was a lot of bird activity both in my garden & the neighbours paddock.  The male wrens are all aglow in their bright blue feathers & seem to be spending more time chasing each other away rather than chatting up the females.  The Crimson Rosellas were in a flock which is unusual as I normally only see a few at a time, the Crows were playing follow the leader back & forth it seemed without any actual purpose & I had a lark sitting on my kitchen windowsill singing it's little heart out for awhile which was lovely.  

I hope you have some nice to be outdoors type weather over the next few days so you can recharge your batteries & hopefully feel a lot better.  

🐻hugs

Paws

[Eagle Ray]

Hello Paws,

I did have Covid in March. The histamine intolerance issue started up just before that, but Covid did exacerbate it, as did a later respiratory infection and the current one now. I don't think Covid is responsible for any long term effects. The histamine issue is definitely linked to oestrogen. I actually firstly had it when I was 38 and was probably getting the first spikes of oestrogen leading into perimenopause (when it starts to spike and crash) which for me has been a decade long thing. I had bouts of it throughout my 40s but doctors had no idea what it was. I've also recently discovered a med I've been on since 2005 inhibits the breakdown of histamine. I'd been reducing it down anyway but stopped it all together in the last few days out of desperation and the HRT as well. The symptoms are utterly relentless. I have managed to keep four pieces of toast with honey on them down today which is more than the last two days, but I'm clearing my throat every second with attacks of retching throughout the day. At least the migraine is gone!

I have some understanding about certain things feeling threatening and about keeping the curtains closed. I have kept mine closed when I've not felt safe, such as a bout of non-safety last year, when I had some aggressive, unpleasantly behaving neighbours this year and even the last couple of days when I've been particularly unwell. I kind of withdraw. I'm lucky in that my little backyard space is very private and no one can see into it and I do feel safe out there. I often wonder about inherited fears. Both my dad and I actually inherited certain fears from his father who was a former soldier and POW. I know your dad was in the war too and wonder if that can feed into how things affect you now? I've begun to work on things like this with my psychologist and I've learned a lot about the role of epigenetics. There is a good book by Mark Wolynn called It Didn't Start With You which looks at how certain behaviours, images, fears etc can be transmitted down. The good thing is epigenetics (as opposed to the genes themselves) are malleable and can shift again in ways that are healing. This is what I am working on within myself including teaching my nervous system new ways of being.

It's lovely you have had the bird activity. Have the neighbour's cattle been frolicking? I have seen the male blue wrens be feisty with one another. They go rough and tumble on my lawn sometimes. They are such little characters! I was wondering my the line on my washing line was becoming frayed. Then one day I saw a wattlebird pulling at it and thought it was just being a mischievous ratbag. But then it occurred to me it is probably collecting nesting material this time of year. Parts of my washing line are now frayed and shredded, but I can understand why it has been seen as useful to the wattlebirds.

I managed to find the video of the photographer on Gardening Australia. I loved it! Thank you for telling me about it. She photographs very similar things to myself. I have countless wildflower and bird images and could try something similar. I can see she is working in Photoshop. Currently I don't work with that software but I have thought about purchasing an alternative called Affinity which enables the same kind of editing but is cheaper. It is really valuable to capture those species on camera and share the collages. I recognised some of species that grow locally here such as the Pink Rice Flower. That one died off on mass here as did so many other plants in the last 12 months, but I'm really hoping they will have dropped seed and come back in the next couple of years. I agree with her that the beauty in Australian plants is in the small detail. I find with a macro lens you discover how magical the intricate nature of tiny flowers are.

It's cloudy today but fairly calm. I might go out the back for a bit of lying down in the backyard before it starts getting too cool. I hope you have a lovely evening Paws.

Hugs 🤗

ER

[Paw Prints]

Hello ER,

I'm glad you liked the story on Gardening Australia.  I thought the collages she built were lovely & that it was a wonderful way to bring life to all the images she took.  Your mention of the macro lens reminded me that I had some images pop up on my facebook feed of different magnifications & angles of photos of dandelion heads & they reminded me so much of looking at snowflakes with how each image was different to all the others.  They were surprisingly beautiful.  

I've written & deleted quite a few paragraphs where I try to explain the thought process & actions I am aware I have inherited from my parents as well as how certain threats/events over my life taught me to fear a variety of things & actions.  All of which were exacerbated by my having mental health issues from such a young age.  Sometimes I think if my mind could come up with a reason it would blame me for the demise of the dinosaurs.

Because of the lack of good grass growth the cattle on all the farms are being moved from paddock to paddock much more than they would normally, so sadly my bovine neighbours have already moved on.  

I'm glad you have been able to keep something down.  I wish I could think of something else you might be able to hold down that would give you some necessary nutrients without upsetting your system.  You must be so exhausted by now that it must be hard to do anything or even think clearly.  Are you managing to keep fluids down?   I ask because it is easy to become dehydrated when you can't keep things down.  Perhaps a trip to your GP for some anti-nausea meds might be the go, it would give your system a chance to reset.  

Rest up lass

Hugs

Paws

[Eagle Ray]

Hello Paws,

I realise it may not have been helpful for me to bring up those things about my grandfather. I’m sorry if that led you into thinking of difficult things. I have a few different factors that have contributed to my struggles too and it can be a lot to think about. I don’t know how similar my experiences are but I do know I easily blame myself for a lot of things. I’ve recently made a friend online who has complex trauma like myself and we are both going through the process of learning not to blame ourselves for the things that happened to us. It is so hard the way the mind works at times isn’t it.

I’m sorry your bovine neighbours have already moved on. I hope they may be back soon. I can walk about 20 minutes from here and be amongst cattle paddocks. I can hear them lowing from here too. There is a walk trail that goes through farmland to the north starting from a town there, kind of like those trails that go through farms in the UK. I like it because you are away from roads but amongst rolling hills and black and white cows.

I baked some chicken and sweet potato last night and managed to keep at least half of it down. I do have some anti nausea meds I used during the migraine attack where I can get up to 24 hours of vomiting. But the histamine issue has no nausea at all. My body just suddenly rejects food. This includes leftovers which accumulate histamine so everything has to be eaten as fresh as possible now. I’ve spoken to 3 local GPs, none who’ve had any idea what to do. The naturopath put me onto a supplement that breaks down histamine which helps but have run out of them and there is a delay in supply so will be really glad when it finally arrives.

I’m losing a lot of fluid but drinking water as much as I can. I drank a lot of water before going to bed last night as I was definitely dehydrated. I will restart a low dose of the hormone meds tonight as I started having the disturbed dreams last night that are typical when the hormones are down. It’s an incredibly tricky balancing act. The hormone specialist will at least be good to talk to and understands what’s happening. 

It’s incredibly still today and going to be like that all day apparently. I think it would be good for me to get out to the river as it is flat like glass and beautiful in these conditions. When it’s so quiet like this I will sometimes hear this breathing noise and then realise it’s a dolphin surfacing. It’s particularly atmospheric seeing them in these conditions. I haven’t had a shower since Friday as just too unwell but will do this morning and I know that will help me feel better.

I hope you have some nice weather and a peaceful, restful day Paws.

Hugs,

ER

[Paw Prints]

Hello ER,

Lass it wasn't anything you said that led me into difficulties writing that paragraph, rather the opposite.  I was struggling to write what I wanted to say in a way that would not be triggering for you or anyone else reading.  Yes my dad's war experiences did shape him & us to a certain degree.  As did both my parents experiences of living through the depression years & mum's upbringing in the country with no electricity & only one cold tap from the water tank.  Add to that a history of alcoholism going back generations & all the associated pain & trauma that was passed down along with it.  I know I never knew with dad's drinking what mood he would be in & it could change on a look.  It's strange there was a lot of love in my childhood, but it came with a lot of pain & fear & loss.  Too many people I loved passed away during my childhood & I witnessed two separate fatal accidents when very young which were "never to be spoken of", despite one of them being my playmate.  My fears were aggravated by there being a prowler targeting a few houses in my street, mine included, over a 4 year period & a number of other events.  Being assaulted in my own home as an adult added to my sense of never being safe.

Your mentioning how easily we blame ourselves reminds me of a chat with Grandy about how many of us on the bb forums are empathic & conditioned by events in our lives to blame ourselves for everything.  It is a difficult combination to manage.  Sometimes I wonder if we could go back & re-live our lives knowing what we know now would we cope better & avoid certain situations or would we simply exchange one version of trauma for another.  

It's not good that you have run out of your supplement, I wonder if there is an alternative supplement that you could take in the mean time.  Googling the main active ingredient may let you find something that would at least help in the interim until your regular one arrives.  I'm so frustrated on your behalf that the medical world can't do something more practical to help you.  

Ohhh wow!!!    Dolphins!!!!   How lucky are you!!!!   You do live in a wildlife paradise, what with Bandicoots & everything else.... I am jealous.... but the good jealous 😊  I am still to set up my wildlife camera, I wish it just came with a basic set-up installed & then only if I wanted more would I need to fiddle with the tiny buttons & miniscule screen.  Serves me right for buying a cheap model, but I will get there.  

I think it is meant to be calm here today as well.  The forecast is for cool & cloudy, but no rain... already wrong as there have been some brief showers.  Still the rest of the day may be dry.  

Hugs

Paws

[Eagle Ray]

Dear Paws,

That would have been so extremely difficult for you experiencing those fatal accidents so young. I think the establishment of trauma in the nervous system is what occurs when things are not spoken about as you describe. The trauma specialist Peter Levine says trauma is not so much what happens to us but what happens inside of us in the absence of an empathetic witness. It was very much a thing in the past that an awful that happened was buried like it never existed. My dad witnessed some awful deaths as an 18 year old volunteer fireman, including several children. He told me about it just once and I could see it still affected him. Many years later I looked up the event historically and an article came up in which the people of the town were saying no one ever spoke of it after it happened. From the trauma work I’ve done I’m finding it’s never too late to heal these past experiences, or as Peter Levine has also said, “It’s never too late to have a happy childhood”. It makes so much sense from all you describe that you would not feel safe as an adult. I can very much relate to the feeling of never feeling safe. But I am feeling a shift in this more recently in that I’ve started to develop a part of myself that can care for the part of myself that is afraid, essentially be the parental love and support that my parents just couldn’t provide in the way that was needed.

So, anyway, I see you Paws and what you have been through and send you much love and support and gentle hugs. I’m happy to be your witness. I think with past trauma we often isolate to protect ourselves. I know I have. But healing occurs when we are seen and cared for. I think as we gradually feel that care we also begin to stop blaming ourselves for everything. Our sense of self value gets stronger and we protect the vulnerable parts of ourselves rather than turning against ourselves with blame.

My supplements arrived today! I will take one before my next meal. My body last night just said to me intuitively it didn’t want anything, including the hormone medication. I’ve weaned myself off the antidepressant I’ve been on for pain for almost 20 years. As both that med and oestrogen inhibit the enzyme that breaks down histamine (the same enzyme supplement that arrived today), my body has shown significant improvement in food tolerance. I was profoundly weak from retaining so little food. But this morning I managed two eggs on toast without difficulty. Later I managed some pumpkin soup and then a stir fry with broccoli, capsicum and spring onion on rice, with only minor symptoms. So it’s made a noticeable difference. I also found a podcast on the topic including a case study of a woman whose histamine tolerance developed and became severe in perimenopause which was very helpful and affirming I’m on the right path. I needed the hormone medication initially as the plummet in oestrogen led to severe mental health effects. I have to carefully watch for that now and I’m going to discuss how I manage going forward with the hormone specialist on Thursday. Oestrogen and histamine feed each other, so any use of oestrogen going forward has to be done with care.

Yes, dolphins are a common sighting here! On one day they were so happy as there were so many schooling fish. In the midst of their feast they were doing flips and all sorts of midair manoeuvres. It was like watching a circus performance! I am actually sitting by the river as I type this. I didn’t get down here yesterday. The tide is low now and I can see shells embedded on the sand below me from the small jetty I’m on. A pelican has just cruised past low over the water in the beautiful late afternoon light.

I totally understand about the wildlife cam. It would be so good if they were just good to go when you get them. Such things can certainly be fiddly!

 Hope it has been a nice, calm day and that you have a peaceful evening.

Hugs,

ER