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,

My internet still wasn't working by 10pm last night, but as I'm trying to get into regular sleep patterns I made myself go to bed rather than staying up waiting for it to work.  I'm literally just out of bed & on here trying to catch up before it goes off again.  It is so annoying I'm definitely going to do a trip into big town just to go to Telstra once this heat wave ends.

Yes when I moved here the lady who used to live next door told me if I saw a snake I could give her a ring & one of her family would come over & shoot it for me.  It does seem a self defeating way of dealing with snakes as another snake would just move into that area.  

Your depression has been constant for some time now, I think getting something to help would be wise.  Depression & constant tiredness often go hand in hand, so it could help with both.  Could you perhaps do a telephone appointment with your hormone specialist if you would find that easier?  I'm glad you are starting to see a little improvement with your histamine levels now you are back on the supplements, I will keep everything crossed it keeps improving.

Hmmm.... as for buying the camera... ummm you are very convincing with your arguments, this is hard.  What I do when I want to buy something costly that I'm tempted to get but don't actually need to get, is I make myself put some money aside each fortnight until I can afford it.  That cut's the impulse part out & if I do change my mind later I have a little money I can spoil myself with.

OK I've been writing this for a while now, I better post this before my internet stops. If it is working I will pop back this evening.

Hugs

Paws

[Eagle Ray]

Hi Paws,

Yes, it’s good to keep to those sleep patterns. I think 10pm is an excellent bedtime which I know I should be following. I’m going to bed too late at the moment, especially over the last week where the sleepiness has started to improve so I’m more awake. It would be good to check in at the Telstra shop to find out what’s happening.

I can do Telehealth with the hormone specialist. There just may be a long wait now as she’s become so in demand. I need to organise it. I feel frustrated in that I feel the antidepressant is treating the symptoms rather than the cause, and I’m trying to solve the underlying mechanisms. I find most medical practitioners have limited time and bandwidth so they rarely deal with underlying causes and how various health issues are interrelated. From everything I’ve researched everything I’m experiencing is connected - hormonal effects, mast cell and histamine issues, the liver disease, depression, fatigue and extreme sleepiness (coupled with periods of intense hyperfocus - adhd symptoms). I also know everything improves when I’m living closer with other people like I was in the city - like my whole system starts to heal. Yet, I have to deal with the fact I’m depressed here and now.

Still obsessively reading about the camera. I can fund it through selling my oldest camera gear. I’m about to turn 50 so it feels like a present to myself. I’m going to be alone on my 50th birthday. I’ve always felt uncomfortable with birthdays as I don’t like attention on myself. But this year because I feel so lonely I think it’s affecting me. I remembered today how when my 21st birthday was coming I considered whether I could have a party at my parent’s house to celebrate, even though normally I was very quiet with my birthday. I’d written down the names of a few friends I thought of inviting. My mother saw the list and said sharply, “Who are those people? I bet you don’t even know them”, then threw her chair on the ground and stormed out of the room. Hence that ended the idea of trying to have a party there. But of course the next year they held one for my brother, fully supporting him and celebrating his 21st. I have just learned to always be in the background. It’s only very recently I’m beginning to see myself and perhaps that’s partly why I’m so aware of how lonely I am now.

Anyway, I can’t shake the urge to buy the camera. It will expand creative possibilities and I know without a doubt I will love it. I have researched it extremely thoroughly and two prime lenses to go with it. It’s a compact system that’s more affordable than larger systems but wonderful for portability and also discrete photography in urban settings where you don’t always want to walk around with a biggish camera. I feel like photography saves my mental health and I’ve actually found quite a few online blogs, videos etc on that topic. It helps so many people.

How are you going today Paws? I hope things are ok and maybe the weather is cooling? I hope the dizziness has subsided too.

Have a lovely evening,

Hugs,

ER

[Paw Prints]

Hello ER,

Well my internet has been down for about 5 hours in total today, so a marked improvement.

If you can fund the camera & it won't leave you short & stressed about money, then my 2 cents worth is... go for it.  Especially if it will enable you to go to more places where you would feel awkward with a bigger camera.  Just from following your progress on here it is abundantly clear being able to get out & about with your camera does wonders for you both mentally & physically.  

I'm thinking a nice way to celebrate turning 50 would be (if you feel up to it & can afford it) to spend the day with your friend in the city (or a friend who lives closer).  Even if you don't want to tell them it is your birthday, catching up for a cuppa & maybe a walk in the park would be nice.  Or... if the weather is nice take your new camera somewhere new to you & have fun exploring both it & a new place.   or... simply catch up with someone via the phone.  

I've not celebrated a birthday since primary school.  Though last year I did have a catch up with friends that just happened to be my birthday & one friend did twig the date so they bought me lunch which was lovely.  Otherwise on each birthday it's usually just a phone call from each of my sisters, when they remember.

Lass sometimes treating the symptoms as a stop gap is what is most beneficial.  You have a number of health issues both physical & psychological to deal with & if taking the antidepressant gives you a break from one of them that must help you overall.  Remember depression can take away so much of our ability to think clearly & function well.  

The dizziness is much better, though not totally gone.  I'm still being mindful of it if I stand up or walk about so I'm not doing anything precipitous. 

Hugs

Paws

[Eagle Ray]

Hello Paws,

I'm looking after fluffy cat again in a couple of weeks during which I'm taking a bunch of camera gear to the city to sell. I know the combined amount of selling that gear can fund the new camera. I'm increasingly aware how important it is to live in the moment and enjoy things, so I think if I know it will give me much joy (which it will), it is worth it. I still absolutely love my main camera gear I'm still using as well, but it's like having different colours to paint with so to speak. In fact the different camera systems have a different colour science and my brain loves novelty and new creative possibilities.

On my actual birthday I have a visit to the naturopath and the hairdresser. I won't actually tell them it's my birthday but they are both nice people to interact with, so that will be good for me. Two lovely friends of mine, a couple, are also housesitting in a town an hour away at the moment. I am going to be visiting them soon. They are beautiful people, so I know that will be good for me too. These human contacts make a very big difference to me.

Paws, I imagine when you were a kid with your mum passing that things would have changed a lot and birthdays might have gone on the back burner, everyone just going into survival mode. I know you took on a lot of responsibilities then. I'm glad you got to have that catch up last year with friends and someone noticed it was your birthday and bought you lunch. Mostly my birthdays have gone by without a celebration too and normally I am fine with that, and really still fine with it now. But I think it's just highlighted my sense of isolation at this point and that I really am lonely generally on a day-to-day basis. I have to find my way out of this loneliness somehow.

I've researched the recommended antidepressant and I won't be taking it. I've read clinical information that the class it belongs to makes mast cell activation and histamine release worse which would be a disaster for me right now. I'm sure the GP and hormone specialist know nothing about that. I had a bad gut feeling about it. I was on the same class of antidepressants from 2005-2008 for an extreme bladder pain condition. It took a small edge off the pain but did space me out, caused very disturbing dreams and eventually hallucinations which made me stop it. I was simultaneously on another antidepressant at a lower dosage for pain from 2005 that I only discontinued last October, and I actually feel better in my head (more clear and less foggy) since I stopped it. There may be other classes that may help, but I will be researching thoroughly before I try anything. I'm determined to find non-harmful solutions for the depression.

I'm glad the dizziness is at least improved. I hope it's nice and pleasant where you are now with the weather. It's warmish here with a gentle breeze. I've just had a bit of a sleep and now enjoying a coffee.

Take care and hugs,

ER

[Paw Prints]

Hello ER,

It's great you can sell some things to get your new camera.  I know you said you were researching cameras, have you settled on which one you mean to get?  I'm looking forward to hearing what new aspects it brings to your photography.

Oh I wasn't aware of the histamine etc affects of some anti-depressants, it's not something I would have thought they would affect.  Yet another thing you have had to learn about for yourself.  It's a pity you can't have that help at the moment whilst you deal with everything else.  But I hope the new camera & all the mental stimulation you get from it will help to brighten your moods.  Plus a visit with fluffy cat 🐱

I saw a Koala today!!!!   It was in one of the trees in the state forest across from me.  Well I'm 99% sure it was a Koala, but I wouldn't swear to it in court, nor was I prepared to battle through the undergrowth (mostly blackberries) to get close enough to confirm 100%.  I know they are about in the forest & in the nature reserves, but I've not spotted one this close to home before.  It was sitting in the crook of a branch that was well shaded, which is why I'm not 100% sure.  It wasn't the only creature seeking the shade, the cows I passed were all in the shade too.  It was hot here being in the low 30s, but tomorrow is expected to be the high 30s, so I will be in under the cooling.

Hugs

Paws

[Eagle Ray]

Hello Paws,

That is so exciting seeing a koala! I suspect you are probably correct in your observation. I had to see the possum in the semi-darkness in my backyard here several times before I 100% confirmed the furry thing was a possum. The description of being in the crook of a tree sounds very much like a koala. Koalas are something we don’t get here in WA so they seem like a magical, rare creature. I hope you might see it again. I feel it’s always a blessing seeing a new creature.

Well as for the camera, I sat at my computer with the payment screen up for sometime but was unable to proceed. I told myself a while ago that my bank balance had to stay above a certain amount and although purchasing the camera would only temporarily reduce it below that amount, the anxiety of my financial future took over. So I decided to postpone the purchase until I at least have the cash in hand from selling the other gear. The camera is the entry level Olympus which is very good for an entry level camera. It is really small, compact and light. It’s on special until tomorrow but I think I have to wait. Sales do come around fairly often with camera gear.

One of the other classes of antidepressant might be ok, but this particular class increases mast cell activation. Ironically it was what I was given for the bladder pain I had years ago which is a mast cell disorder, so may have been making some aspects worse. I’ve also learned that a strong painkiller I was on for migraines from aged 14 is also a mast cell activator. All of that could have contributed to the sensitivity I have now. So I’m very cautious with medications. I’ve learned that doctors often only know the bare minimum themselves, so I have to take on the responsibility of doing the research.

You must be awake tonight as am I at this late hour. I fell asleep to a podcast but then woke up again. There is also quite bright moonlight. I sometimes feel the moonlight does affect me. I love it actually even if I am wakeful with it.

I was hoping the weather had cooled more for you and dropped below 30 degrees. I did manage a short walk across the road today and yesterday. I’m seeing plenty of kangaroos. Yesterday I stopped when I realised one was very close to me which is unusual as they usually bound away before I get that close. This one was a large male who had a mouthful of vegetation he was munching. He bounded off eventually but slowly rather than in the startled way they often do.

I’ve had a baby kookaburra around too. They really do make quite a hideous noise trying to emulate an adult sound 😂 It was on a branch with a parent, amusing me when hanging out the washing the other day.

Well perhaps I’ll put on another podcast to go to sleep to. There’s a wildlife photography one I like because the presenters have such nice voices. It doesn’t matter if it’s one I’ve heard before as I go to sleep with it. I’m so excited about your koala 🐨😀

Hugs,

ER

[Paw Prints]

Hello ER,

If you are going to wait until you have sold some camera items before buying the new camera, may I make a suggestion.  Check each week on all the sites that stock the camera you want & make a note of their prices.  Some of the recent ACCC studies over the past year have shown that items supposedly on sale are actually the same price or even a higher price than the regular price as the companies may put items price up just before a sale.  They are investigating many companies for fraudulent, misleading sales for manipulating their price structures that way.  It may help you get the best price.

What type of kangaroos do you get in your area?  The kangaroos around me are greys & even though they are smaller than the reds I still would be wary about getting close to one, especially the males.  Suddenly finding yourself close to a male must have got your heart racing.  

I don't think I've ever heard a baby kookaburra call.  There are kookaburras hereabouts, but they all seem to call at the same time, so I rarely hear the call of a single kookaburra.

After yesterday being so hot, a very blustery cool change came through & it's dropped the temp down nicely today.

I'm very aware that GPs don't always have expertise when it comes to a detailed knowledge of the various medications.  I've found they tend to have "go to" meds that they routinely prescribe.  I'm allergic to the two most commonly prescribed groups of antibiotics & it has thrown every GP I've ever been to.  I've had GPs ask me what I can take or actually just google for an alterative while I'm sitting there.  

Yes I was up late the last time I posted.  I'm still determined to try & get into a healthier sleep pattern & so the 10pm or earlier bedtime is still my aim.  I have so many good intentions health wise & have had them for years without actually achieving any of them.  I am yet again reminding myself that wanting to change is a good first step & I just need to keep trying.  

I hope the podcast helped you get off to sleep

Hugs

Paws

[Eagle Ray]

Hello dear Paws,

I think it’s really important to be kind to yourself with health aims. I feel there are logical reasons when it’s a struggle and it’s not because of not having good intentions, as you say. What I have found being on my own is it’s harder to kind of manage myself day to day. When I lived with others I was naturally more focused and organised. I think humans are actually meant to be around other humans daily, and certainly our hunter gatherer ancestors lived that way. I know it sparks energy in me and I feel quite different in the presence of others. But I think for those of us living alone we have to kind of generate our own energy without that interpersonal presence and it’s actually hard to do. So I think knowing that we can be kind to ourselves and know we’re doing our best. It’s perhaps why I find listening to a podcast helps me doing things like the dishes because I feel like there’s people there having a conversation. If I lived near you Paws I’d be happy to take you out for a coffee or do nature walks with you. It can really shift the energy in our bodies when we have company.

The kangaroos here are Western Grey Kangaroos so similar to your Eastern Greys. I have had a sort of confrontation with a big male before. A number of years ago I accidentally disturbed a mob while photographing birds in a reserve south of Perth. They bounded away except for the big male who stood up to full height and lifted his bicep exactly like a bodybuilder. I got the message and walked quickly back down the path away from him and he bounded off. I could sense it was a defensive threat more than an offensive one, but I could certainly tell he was easily more powerful than me. So when I saw the male close up the other day I was cautious.

The baby kookaburras sound like they’re trying to emulate the adult call but it sounds hideous 😂 This morning one was doing that at the same time as the incessant raucous baby galah was squawking. What a cacophony!

Yes, I think GPs do have their “go to” meds as well as set protocols they follow which makes sense. But I wish they were able to more proactively explore beyond that when the set meds/protocols don’t fit. I’m feeling disillusioned with the hormone specialist doctor who hasn’t followed through on any of the things she said she’d do - send a blood test form and script and organise a follow up appointment. I found she just sent a report to my GP instead. I’ve tried following up further and still no response. I think she’s blanking me out now as she doesn’t know what to do with the histamine issue. But where she’s dropped the ball the naturopath has picked it up and been so helpful. He can see how all the parts fit together. He’s putting me in contact with a nurse practitioner who can prescribe hormone meds as I’m interested in reintroducing one of them which stabilises mast cells (as opposed to the other hormone which activates them). I’m also disillusioned with the liver specialist who won’t change my current med which now has a safety warning on it and is being withdrawn in the US. Specifically it’s now been associated with serious liver injury. He says him monitoring me every 6 months is adequate. I don’t agree. So once again I’m alone working that one out.

But on the positive side I saw my psychologist today who is extremely supportive like the naturopath. I have to focus on the genuine, caring, helpful people and just interacting with those people is good for my health. I’m learning to disengage from the unhealthy and orient to the healthy when it comes to people.

Thanks re: the ideas about pricing and cameras. I will definitely keep those things in mind.

I’m really glad you have a cool change. It’s quite warm here tonight but we are forecast likely rain and possibly a storm tomorrow. I’m so glad for the rain. This time last year we were in the middle of bone dry drought.

Well take good care Paws and wishing you a good day tomorrow (or today now where you are).

Hugs,

ER

[Paw Prints]

Hello ER,

I would find the problems you are having with the medical profession not only frustrating, but demoralising & depressing.  I really do feel for you having to battle through your health issues with so little support or understanding.  I do like the sound of the nurse practitioner, as I've found every specialist nurse that I've ever been under the care of, has been leaps & bounds better than any doctor (even the good ones).  I truly hope your find this one to be the same.

I know you have said you don't really feel up to doing the trial & error of getting a new liver specialist.  Just a thought... are there any online or local support groups for people with your liver issue or liver issues in general.  I'm thinking such a group would be a good place to get first hand opinions of the specialists in Australia that are worth contacting.  Even if they are interstate perhaps there is still the possibility of telehealth consults & testing can be done anywhere with them getting the results direct these days.  

Thank you for thinking of having coffee with me or taking a walk.  I don't feel isolated here, I do get some human contact a few times a week whenever I go to the general store.  I've lived here long enough now that we often have a good natter & it is a place to chat to other locals & keep up with what is happening in the local area.  Plus the people around here let me have my space & yet they still have their ways of letting me know they are there if I need them.  There is a small community centre in the village which does organise regular outings or things like craft sessions, card games etc.  So if I wanted I could go & join in, meeting more people.  What I am missing is a furry friend to care for.  I know I have been saying I won't even start talking to breeders until I have the house & yard safe & ready for a pup.  I have been wondering lately if I might be more motivated to get things ready by starting the process of choosing a breeder & thereby having a deadline to meet.  That needs more thought.

I hope you get the rain.

Hugs

Paws

[Eagle Ray]

Dear Paws,

I had a receptionist from the liver specialist’s office call to check if I had received the message from him. I said yes but that I was still uneasy about taking the medication. She kindly offered to speak to him again and called back later to say that he says I can drop the med for 3 months and see how I go without it. I said I felt better with that. The work I’m doing with the naturopath is seeking the same outcomes but in an even more targeted way as he’s done 3 lots of microbiome testing which has given many important clues indicating what supplements to use. I was reading yesterday that this kind of microbiome work is being looked at as an alternative to the existing meds for the disease, so mainstream medicine is beginning to catch up with these more integrated approaches. It was working with the naturopath that balanced my liver readings for the first time in years, so it feels like the right path.

I’m a member of an online community already that is internationally based for the disease. That’s how I knew about the FDA warning and planned ban of the med in the US. Initially the warnings were only for people in cirrhosis but have now been extended to those not in cirrhosis which is what got me concerned. I don’t think I’ll try switching specialists at this point because I think it’s very difficult to find the right person. My current one is polite but just is always rushed and there’s little engagement. I think that’s the norm more than the exception for specialists generally. There aren’t any Australian support groups because the disease is quite rare.

I’m glad you don’t feel isolated. I think it’s good if you can feel a sense of community around you and that there are people there if you need them. I have struggled to find a sense of community here. There are a few people I could call on if I really had to, but I think I’d have to be a bit desperate to ask for help. For me a lack of close people around me definitely affects me including how I function on a day to day basis and I guess that’s what I’ve learned about myself coming to live here. My elderly neighbour was a lovely friend, but while I have friendly interactions with a number of people here, I still feel very isolated in my own world. So the job for me is to find some kindred spirits to connect with. I am going up to another town to visit some lovely friends soon who are housesitting there and I can feel how much I need those connections.

That may well be a good idea to think about looking at choosing a breeder first. It might be motivational. Just getting out and meeting breeders will make it more real and that might make it easier to actualise the changes you want to do at home. It will also be exciting meeting breeders and learning more about the breed, which I’m sure you know a lot about already. I’m sure a new furry friend will do wonders for you. I’m already looking forward to caring for fluffy cat in late Jan/early Feb. It’s incredible how much difference pets can make.

It did rain this afternoon but not as much as I hoped. I had a day of lying down with a cold pack on my head for a migraine but I’m doing much better now. I’m listening to the gentle breeze outside.

Sleep well Paws 😴

Hugs,

ER