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.

[Eagle Ray]

Hello dear Paws,

I just wanted to let you know I have sent you a reply but as has happened previously it hasn’t appeared. I’ll see if it appears by tomorrow and if not will email modsupport.

Wishing you a peaceful evening.

Hugs,

ER

[Paw Prints]

Hello ER,

Thank you so much lass for offering to be my witness, you are such a kind & generous soul.  I remember when I was in the psych hospital (many years ago) & talking with my psych nurse, it was the first time I had actually spoken my playmates name since his loss.  Though it helped so much being able to speak of it, there are aspects of it which still haunt me.  It's strange there are still things that even now after so many years & mental health interventions I still can't even allude to.  One day perhaps I will get there.

Your poor dad, being an emergency worker must take its toll on the individual as much as being a soldier does.  Especially in past years where what they had to deal with wasn't something that was to be talked about. He must have been carrying his own pain along with the affects of his father's.  I have reached the point where I feel that though it doesn't excuse any of the harm they did others as they battled their own demons, it does give a context to those of us who were harmed that can help with healing.  I do hope you have also found understanding your dad better is helping you to work through your own traumas & that it is helping your healing process.

How wonderful to hear you have finally managed to keep some small meals down.  That must in itself help you to feel a bit brighter.  I think you are on the right track having small meals, as that must reduce the possible histamine hit you get in one go, helping your body to cope.  I say that assuming that the supplement you take only gives you a certain amount of the enzyme you need & that can only deal with a certain amount of histamine at a time.  Of course I realise that may not be how it works.

I truly hope that when you speak to your hormone specialist later today that she can come up with a regime that finds the balance you need to move forward.  Do you know if once you pass menopause & your body's hormone levels stabilize it will be possible to wean yourself off your hormone meds altogether without having to worry about mental health affects?   I'm afraid I know next to nothing about hormone supplements during perimenopause as I didn't even think to try them.  

I'm just picturing in my mind where you are sitting, with the sounds & smells of the water & surrounds.  The light is so different in WA compared to here & having the late afternoon glow coming off the water would be so lovely. It must be such a perfect place to re-find your sense of balance & calm.  

I'm really hoping your being able to keep food down continues & that you start to re-gain your strength enough to get out & about more.

Thank you again lass for your kindness.

Hugs

Paws

[Eagle Ray]

Dear Paws,

I think it is perfectly ok to know that there are some difficult things from the past that are difficult to allude to, and  that there is no right or wrong about if and when you go into exploring dealing directly with those things or not. I'm a great believer in trusting yourself, what your intuition says about what feels right to do or not to do. A good thing about my psychologist is that she has never made me try to talk about anything. She just lets me bring up what I feel I need to. As a result, I have told her more than any other therapist and she understands me much better than any of the other therapists I have seen. I'm thinking just now about cats going to the people who don't look at them and give them too much attention. It's sort of the same principle, allowing things to be and come up naturally rather than force them.

With regard to anything my dad did to me growing up, and the same with my mum, I forgave them a really long time ago. I really understood long ago that they were traumatised people. As a teenager I remember feeling very angry at my dad. At the age of 16 I stood up to him for the first time when he was in one of his explosive rages. I yelled back at him and it broke him down. He went to another room and cried. I could see there was so much pain underneath. That actually shifted things with him and me. He never yelled in an out of control way again and by the time I was in my early twenties he had really mellowed. We became much closer. We still didn't really have conversations exactly but the energy was totally different. There was a kindness and gentleness there. I've learned that brutality and rage, and kindness and gentleness, can exist in the same person. The same contradictions were in my mum until the end, but my dad had done quite a bit of reconciling within himself by the end of his life. Some of it was just a kind of resignation too, in relation to dealing with mum's ongoing rage which she directed primarily at him and me.

Yes, I think each enzyme tablet is tailored per meal. The advice is to have no more than 3 a day, so one before each meal. I saw the hormone specialist this morning and she was so good to speak with as usual. She was fine with me cutting out the hormone meds for now because of severe histamine overload. She has given me an ongoing prescription and trusts me to know if and when to restart it. She knows I'm intuitive about my own body. She said she has another patient with the same issues but it is an area that is not well understood in medicine. With regard to coming off hormone meds after menopause, it varies between women. Some can do that and others deteriorate if they do. I read a sad case of a woman whose doctor said because she was in her mid 50s she needed to stop the hormone meds. They had greatly improved her mental health, but once off them she deteriorated rapidly and took her own life. That's what I was scared of as I was at the extreme end of distress when I started them and they were honestly life saving. But I seem to be ok at the moment and I think as the histamine and oestrogen feed off one another I had to drain some oestrogen from my system. I feel I will know if and when to restart things. I saw my psychologist yesterday and was telling her that I can feel something has shifted in me. There is another level of letting go where I'm going into self-care in how my nervous system is responding and I think that in itself starts to rebalance so many things at a hormonal, immune and autonomic level. I don't want to struggle anymore, but as I let go of struggle healing processes begin.

As I told the radiology clinic when booking a biopsy that the original impetus for the breast scans came from the hormone specialist, even though the GP ordered them, I found today they had sent the results to the hormone specialist as well. She told me all about it (unlike the other doctor) and was reassuring. It is almost certainly a benign tumour called a fibroadenoma. She told me exactly where it was, how big it is etc. She said it's still good to do the biopsy to confirm but told me she didn't want me driving to the city until I was well enough. She was so much more caring, informative and helpful. So that is unlikely to be anything of concern and I feel better about it now. I wish all medical people would communicate in clear, informative and caring ways.

I'm wanting to go to my favourite spot by the ocean but I may only make it to the couch 😂 Still recovering from the infection as well. But it's a beautiful day today and excellent drying weather for my washing. I hope it has been a lovely day for you Paws and that you have a restful, peaceful evening.

Hugs,

ER

[Paw Prints]

Hello ER,

I wish all psychologists were like yours, it makes such a difference being given that safe space.  I had a psych nurse who was the same & I think my time with her was much more beneficial than the all my sessions with my psychiatrists & psychologists over the years.  Even when I was an outpatient from the psych hospital she remained my psych nurse & it helped so much having her not only sit in every session, but having sessions with her either at the clinic or at my house, where we would be able to talk over day to day issues.  I missed that support once I was no longer eligible.  Given how hard it is to find psychologists or psychiatrists in my area I think training more psych nurses to work in outreach would be beneficial.  My GP is next to useless when I try to have a mental health consult.  

You have managed to find some wonderful health professionals, I love how they recognise & respect the fact that you are proactive about your health care & that they trust you to do what is best for you.  Your hormone specialist sounds so reasonable & honest, especially about the lack of medical knowledge regarding histamine intolerance.  A medical professional who admits that they don't have all the answers & is willing to learn is worth their weight in gold.  It's great to hear that your lump is benign.

Making it as far as the couch is a win in my world.  I hope your couch looks out over your garden as mine does, of course you can still travel to beautiful places via the web if it doesn't.  I hope you are still keeping food down & getting enough rest.

It has been a strange week for me.  I thought that what would have been dad's 100th birthday last year made me feel old, but what would have been mum's 100th this week makes me feel almost ancient.  She was so young when she passed that it is odd to think of her as ever being so old.  

Hugs

Paws

[Eagle Ray]

Hello Paws,

I'm so glad you had that helpful psych nurse. I hope just remembering her kindness and support is still helpful now. I find just remembering a person's kindness can be helpful for me. In the last few days I've taken longer to get to sleep and have been waking up several times. This isn't surprising as I've cut out the meds that were helping me sleep. But I have found recalling the kind, warm energy of certain people can help my body relax and get off to sleep. I feel I am very latently (well past childhood!) learning how to help myself feel safe to sleep. I was just thinking from what you were saying how it is often the nurses who provide the greatest help. With my dad with his Parkinson's it was the Parkinson's nurses by far who provided all the real support. The specialists prescribed meds but nothing beyond that and really weren't much help to talk with at all. The nurses by comparison were warm and genuinely helpful with both moral and practical support.

I was thinking there may be a service that could still provide some support for you maybe similar to the psych nurse. Many months ago now the disability employment agency I was with referred me to a local service where a social worker can come ands support you. It is a free service. As these services are so in demand they only got in contact with me two days ago. They'd left a message on my phone which I haven't responded to yet as I'm not sure I still qualify for the service and tend to think there are people in greater need than me. I am in a much better place now. I might at least call them and discuss it. But I was just thinking as you are on DSP and if you have a referral from someone like a GP or psychologist, you may have a local regional service like this also. With the one here the social worker apparently comes and spends time with you at your home or in a park or with daily activities as a means of support and company. I think that it can take the shape that is needed to support you in ways that are tailored to you. I just thought I'd mention that anyway as a possibility if such a service is available.

I do feel very fortunate with health professionals I have found. Seeing the hormone specialist yesterday and the psychologist the day before was so affirming and genuinely supportive. The hormone specialist said to me yesterday, with genuine concern, "Are you ok?" It means so much to me and I almost cry typing that, because I am so used to medical encounters being the opposite where it feels cold and clinical and you leave them feeling lost, confused and profoundly unheard. I have really learned that we heal in relationship, in the space between ourselves and others and also in how we relate to ourselves. A medical practitioner who understands the critical nature of interpersonal care in health and wellbeing makes all the difference. I am also becoming this care for myself now and I was able to say to my psychologist two days ago, "I think I'm going to be ok".

While my couch is not right next to the sliding door that goes outside, I can see trees and sky from there and a bit of fence the birds often land on. I like the fact I can have the screen door open and feel the fresh breeze (when it's not too cold). It's a very comfy couch and I've slept on it some nights when I've been too ill to go upstairs to bed. I am certainly improving each day and know I have made the right decision with the medicines.

It is interesting to reflect on those who have passed and what it may have been like if they were still around. It would have been so challenging losing your mum when she was so young. I feel like something of their spirit is always with us. My dad's mum died when he was 5 months old so I obviously never knew her. But I have seen photos of her and she looked like the most lovely gentle person. I have wondered how different my dad's life would have been had she not passed then and also how lovely it would have been to have her as a grandmother. But also, and this may sound weird, I feel her spirit is with me and was with my dad and that he is peacefully with her now. Her grave is in a remote mining town and I will visit there again and feel like I am connecting with her and dad. Plus I feel like she is there for my mum as well in spirit. My mum's mum was cruel to her, and had my dad's mum still been alive I think she would have been a profoundly kind presence in my mum's life. So go my musings at this late hour.

Take care Paws and I hope you are sleeping peacefully. May tomorrow be a beautiful day.

Hugs,

ER

[Paw Prints]

Hello ER,

Warm enough for summer clothes today.  The farmers are mowing their silage, but it is obvious they won't be getting as many bales off as usual.  I'm hibernating indoors with the house closed up as all the mown grass is not doing my allergies any good as I discovered when I nipped out to the shop.  

I've had a very relaxing day today.  I did my dishes & then excused myself from having to do anything on my list of to do's.  So I watched Picnic at Hanging Rock this morning & then I've been doing a jigsaw interspersed with watching the birds through my window.  I've also eaten the vanilla slice I bought at the shop, which was yum.

I think it is a basic human trait to wonder what if.  Especially what it would be like if the people we lost lived longer & we got to interact with them.  I wonder what it would be like to have had grandparents, I remember one visit to mum's dad when I was 4, he passed later that year & my other grandparents passed long before I was born.  Of course I wonder what mum living to an old age would have been like.  I don't think it weird that you feel that the spirits of those who have gone are with you, it is a very common belief around the world with millions of people.  

I'm so pleased you are feeling better each day.  You have had such a bad run this year health wise.  It would be wonderful if you develop a positive feed back loop with feeling better helping your body's systems get better, which makes you feel better & so round & round.  I hope you managed to get out in nature today & feel grounded.  Gardening Australia last night had a story about how western medicine is now recognising the benefits of being in nature to our physical & mental health.  

Did you see the aurora?  I missed it, but they think it should be visible over this weekend as well, fingers crossed.  

Sending you supportive hugs

Paws

[Eagle Ray]

Hello Paws,

That's lovely you had a relaxing day and also that you got to where summer clothes. I like that feeling of the first day warm enough to wear short sleeves and being able to feel the air and the sun on my arms. It feels very freeing after being covered up in colder months. Good on you for excusing yourself from further chores after the dishes and enjoying watching a movie. I have never actually seen Picnic at Hanging Rock, only small excerpts. It looks a bit scary 🙈 I know it's an Australian classic so I should watch it one day. Doing a jigsaw interspersed with watching birds sounds idyllic, amplified even more so by the vanilla slice. Yum!

I wonder about grandparents too. Both my dad's parents had passed before I was born. My mum's dad died when I was seven and I'd only met him about four times. While her mum stayed with us on a few occasions it was always deeply dark and depressing as she was a profoundly depressed person and also there was incredible tension and pain between her and mum. So I don't feel like I had grandparents in my life either except for a few brief times that were not pleasant. The idea of the warm, comforting granny who bakes cookies and gives you hugs is elusive. But I do think we can know older people as we grow through life who are like grandparents in a way, or wise elders.

I am working on the positive feedback loop for my health. The histamine symptoms did get worse again today and I got very down late afternoon. I had a cry then made myself go for a walk. Apparently you even have to be careful with exercise which can exacerbate histamine intolerance, but I thought stuff it, I'm going for a walk. I think it's more ok if it's not vigorous exercise. I found a few more wildflowers have emerged and I'm hoping to get out again tomorrow with my camera and photograph them. On my return I met a kangaroo on the path. They usually bound off but this one didn't and I had a chat with her (just guessing she was female but hard to tell as it was getting dark). I could see her ears pricking up and listening to me. I find animal encounters so calming and I can actually feel my body feeling better after such encounters.

I didn't realise the aurora had happened again! I didn't sleep until 4:30am last night so I should have been out looking as I was wide awake at the time I expect it was active. Instead I was browsing animal shelters for a possible rescue dog, which is of course hypothetical as until I know for sure where I'm living in the future getting a dog right now would probably not be a good idea. But I just get these impulses to look at the dogs. It's hard knowing so many are looking for a home. I just looked now at the aurora forecast and I can see that it is becoming more active over the next 15 minutes. My guess is I will not sleep easily tonight either so perhaps should go out and look. I have a bad cough right now with the histamine issue so it feels like an effort, so will see how I go. While I know it's definitely partly linked to the medication change, I wonder if I also couldn't sleep last night because of the aurora activity 🤔 I hope maybe you may get a chance to see it 🤞

Right now I can actually hear froggies down by the river croaking through the open window. I wonder if they are affected by the aurora 🤔🐸

Thanks so much for the supportive hugs. It means a lot. Supportive hugs to you too 🤗

ER

[Paw Prints]

Hello ER,

Picnic at Hanging Rock is a film very much of the time it was made, I wouldn't call it scary, it does try to be mysterious & atmospheric.  It may be set in 1900 & get that time period down well, but it owes a lot to the 1970s  surge in fascination with things like crop circles, the Bermuda Triangle & other "unexplained mysteries".  Would I put it in my top 10 movies... no I wouldn't.  It is a good movie when you don't want to have to think & simply just switch off for a bit.

I missed the aurora again last night & surprisingly for the same reason as you.  I was browsing animal shelters, despite having settled on getting a Field Spaniel puppy.  I was looking at the old dogs that might only have a few years left.  I feel so sorry for them as it must be very confusing at their age.  There were a couple of oldies, but they were large breeds which I'm not allowed per family.  I was tempted by a couple of middle aged Labradors, but their profiles indicated neither had any training & one wasn't even house trained.  I don't think I'm up to trying to train an adult dog that is so strong these days.  No chance of me seeing the aurora tonight as it is overcast.

I'm glad you let yourself have a cry rather than trying to keep everything in.  Your life at the moment isn't what anyone would want to have to cope with.  It will become too much from time to time & it is ok to acknowledge that with tears.  The positive thing to hold onto is that as you learn more & make what changes are necessary things can & will improve.  Medical science only knows so much, I doubt any doctor would have prescribed a meeting in the twilight with a kangaroo to help, yet you found it beneficial.  You have this lass.  

I hope you felt up to getting out & photographing the wildflowers today.  

Some big 🐻 hugs

Paws

[Eagle Ray]

Hello Paws,

After posting a reply to you last night I decided to go out aurora hunting. It was a "minor storm" according to the aurora forecast. I went to the location where I saw it previously which is a coastal lookout point. This was at 11:30pm. Last time plenty of people were all there with their chairs and hot beverages and blankets watching it. It was faintish then but very clear and bright through my camera which could see it better. This time there were no people there at all, and no visible aurora as far as I could tell. There was bright moonlight from a half moon. I went down a walking trail from the lookout to an area of granite rock, still quite high up with a view. I took some long exposure photographs over the coastline in the moonlight. I really enjoyed doing it and it was so atmospheric out there with the waves rolling and crashing below. There was just a light breeze and it wasn't cold. I came home at 12:30am. From what I can see tonight there is no active aurora, at least not at the moment. I saw images from Friday night on the ABC website and they were amazing!

I understand very much about feeling for the older dogs. I have thought of adopting an older dog too, to give them a good life in their final years. I remember watching The Dog House Australia and there was this lovely man who was a doctor who specifically requested to adopt an older dog. He worked long hours so didn't feel he was suited to an active younger dog that would need a lot of input and exercise. But he felt he could have an older dog who was happy to chill at home while he was at work. He also knew that the older dogs are often overlooked at the shelter and he wanted to give one a home. They found a match for him which was lovely. From memory the dog was something like a blue heeler but can't remember for sure.

Today it's like I'm in a full on allergy state. In the past I simply didn't suffer from allergies, but with this whole histamine intolerance thing (which itself is not an allergy) I feel like I am starting to have allergic reactions as well. I have wondered if I have developed mast cell activation syndrome which commonly features histamine intolerance. From 2005 I had a painful bladder condition that is characterised by activation of mast cells, so it may well be the case that something similar is happening again. I lost all my lunch which was because I tried to eat something from the bakery that had peas in it. Peas are yet another problem in terms of histamine. I thought I could get away with, but no 😔 My body felt better as soon as it got rid of it. I went back to simple chicken and sweet potato for dinner, a staple that my body tolerates.

I was meant to go to the city tomorrow for another stint of looking after fluffy cat, but I realised I am simply not up to the drive there. There is someone else who can feed her. It is so difficult with non-stop symptoms. But I feel like my body is going through some kind of massive detox it is meant to go through. I'm learning to let go of trying to control anything and just follow whatever my body needs in the moment. I didn't get to doing any photography today because by the time I went for a late walk it was a bit dark for the wildflower photography I intended. But I saw some flowers I definitely want to go back and photograph. I'll see how the weather is in the next couple of days. Saw a big kangaroo bound across the road just before I got home.

Thanks so much for your kind support Paws. I hope all is going well for you and that you had another pleasant day today. The magpies are doing their night singing here again.

Big hugs to you too 🤗

ER

[Paw Prints]

Hello ER,

Oh lass... I'm going to put my mother hen hat on & tell you what you already know... it must be tempting to try to get away with eating a little of something on the "best not eat" list (like peas), but clearly you are going to have to be very strict with yourself for now & not tempt fate... not keeping your food down also means you haven't kept the supplement you take with the meal down either... you're not getting needed nutrients & even more importantly it makes you feel awful which is the last thing you need.   OK mother hen hat off 

I'm glad you felt up to taking the walk to the lookout, even if the aurora didn't show.  It sounds like it was invigorating being out in nature at that time.  I hope the long exposure photographs came out ok, were they of the stars or the scenery or something else?  

I'm sure fluffy cat will miss being spoilt, but it is wise not putting yourself through the stress of the drive.  I used to watch both The Dog House UK & the Aussie one.  Whenever they went to the kennels to get a dog to introduce, I was always sad for the ones not chosen that time or perhaps ever.  I couldn't work at such a place, I wouldn't be able to go home at night & leave any of them in the kennels, it would break my heart.  I did sometimes get irritated when the people meeting the dog wanted it to interact straight away & that the people at the shelter never suggested that it might be wiser to go slow & do a number of visits.  I think both shows tended to idealise the idea that you can get the right dog just when you happen to want it.  But I still watched every episode whenever I remembered it was on & I did love seeing the dogs happily settled in their new homes.

I'm off to bed soon as I want an early night.  

Sleep well

Paws