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.

[Hanna3]

Hi ER, have you had the doctor's appointment and if so, how did it go?  I really hope you can get on the DSP.  It's lousy feeling ill like that, I get gastro sometimes that lays me up for a day feeling horrible!

Not much news as I had to do a big shop which meant going to two different supermarkets and we had a huge storm and rain and it cooled things down at last thank goodness.  Brucie has been tired out from the prolonged hot weather and I think the cool change and storm affected him as he's been asleep for the entire day!  Cats sure can sleep a lot.

I am learning some pointers from a couple of Utube channels about keeping cats - sometimes they have a good suggestion that's worth following.  They suggest only giving food when I am here and not leaving it out for the cat to eat - this way he learns to associate me with food which is positive.  

Sorry for the delay posting I am often here only once a day... I hope you get some cooler weather too it may help you to feel a bit better!  

[Eagle Ray]

Dear Hanna,

Yes, I saw the doctor. I actually found it distressing. As well as the liver disease I have a condition called fibromyalgia which I have had since 13, so for 36 years now. It is a condition many doctors think is psychosomatic rubbish despite strong clinical evidence now to the contrary. So although I know my own body well and I can discern the liver disease symptoms from the fibromyalgia ones, he puts basically everything down to fibromyalgia. It’s inaccurate and feels like the same medical gaslighting I have experienced for decades. I am yet to see his report which he is going to send to me, but dread the fact that other people represent me in my DSP case and I can’t trust they will do it accurately. Anyway, I won’t say more about it but I did call the Blue Knot Foundation counselling service this afternoon who were very supportive and really got it as they have many people call with fibromyalgia and a complex trauma history who have the exact same experience.

I’m so glad things have cooled down for you! It makes sense Brucie is sleeping away as the heat itself is exhausting. His body is probably saying, “Ahh, now I can really relax” 🐱😴. I’m glad you are finding some helpful things on YouTube. I have used it for things from home maintenance tasks I’m trying to figure out through to photography skills I teach myself because I’m into photography. It’s amazing we have access to so much info now. Sometimes you have to discern the best info out of what is available as you can get different approaches to the same things.

Please don’t feel you have to respond quickly to anything. I’ve just been here a lot lately. We are having a hot, humid day here. There is total cloud cover and it’s on the uncomfortable side. It’s much worse again in Perth though! Even at 5am here this morning I could feel hot air coming in through the window that was much warmer than the internal temperature. It’s like we are under a strange, hot cloud blanket.

Wishing you and Brucie and lovely, restful evening.

Hugs,

ER

[Hanna3]

Hi ER

I think the fibromyalgia must be inflamed by the stress you are under at the present time - I find almost any health issue is worsened by stress.  When I had severe sciatica from a slipped dis which was agonizing I found heat packs to make the muscles relax and distraction - through doing music - were the best treatments.  The pain-brain-more pain cycle is a nasty one and hard to stop.  I hope you can find a more supportive doctor - many GPs are not well trained in mental health issues.  My GP where i used to live had herself hired two psychologists to assist her patients with mental health issues as she felt these just weren't being given sufficient attention, and being a busy GP she didn't herself have the time.

A really busy day here as I had workmen here repairing a roof leak for hours and then had to do shopping and errands etc, so just starting to wind down now.  Bruce is doing so well, he follows me around the home and likes to be near me at night espeicially.  Currently he is sitting on the bedroom window ledge looking at the view of the mountain and trees - it's rained a bit (hot and humid but wet) so he is probably enjoying the smells.

I hope things improve for you - that visit to the doctor was frustrating for you.

[Eagle Ray]

Dear Hanna,

 I love your description of Bruce on the window sill looking out at the mountains and trees. The cat I sometimes look after likes to watch the sunset. There is something so perfect about a cat observing the world and, as you say, no doubt smelling things too. They are so present.

 I’m not actually worried about the fibromyalgia which I am very used to now and can manage well. It’s more the liver disease which is a degenerative autoimmune condition. It is rare and GPs are not familiar with it. I feel very alone trying to engage on it at all. And it makes it harder that the GP thinks everything is fibromyalgia. I think the doctor you mention having the psychologists in the same practice makes sense. Trauma-informed psychologists are a particularly good idea as trauma and health conditions overlap so much. An integrative trauma-informed clinic as a whole would be wonderful.

 I hope you can really relax after the busy day. It sounds a bit uncomfortable still with the heat and humidity. It’s felt very humid here too. Still bright daylight here. Bye for now,

ER

[Hanna3]

Hi ER,

I don't know where you can go about the liver disease... has your GP got any suggestions?  

It's much cooler here this afternoon but apparently we're in for a couple of very hot days... at least the days are noticeably shortening no.  Brucie sleeps a lot of the time, then of course wakes up in the middle of the night.  I'm following advice on Utube cat channels to feed him about an hour before bed and then when he wakes up during the night to try to ignore him - in the hope eventually he will realize it's futile to make a fuss as I don't respond.

Not much news, met a friend at a cafe for a while and browsed an op shop - I love music so I get cds cheaply that I can play.  I so wished i had learnt piano when I was a kid.  

Otherwise a pretty boringly routine day here!  I have a pretty quiet life - my friend likes belonging to lots of groups but that's just not my thing.  I do sometimes wish there was a nice concert to go to though.  There is a garden club here that meets once a month and now the weather is soon cooling a bit I might join that - it's just been too hot for me during the summer!

[Eagle Ray]

Dear Hanna,

I have a liver specialist who is polite with a kind manner at least but he is only doing basic testing and although I am still getting strong bouts of illness that come and go, he has said in his words, "my job is done" because my blood test results have stabilised. I feel really stuck at the moment as I know something isn't right but it is so hard to get help.

It has been cooler here too. Yes, that would be lovely to go to some music concerts. A few months ago a friend here invited me to a piano recital in town. It was really good. There isn't a lot of live music here. Mostly you have to go to a town about half an hour away for more events.

I'm glad you got to meet your friend at the cafe and enjoyed the op shop. I had quite an addiction to op shops for a while. These days I am not wanting to accumulate things so I stop myself from going in them. But I was a particularly keen op shopper from about 2005-2013. I loved the fact I could walk into an op shop with a $10 note and come out with two nice tops and a skirt. I didn't have much money so it felt empowering to go somewhere where that didn't matter. I also love the fact that going to op shops is like a treasure hunt. You never know what you'll find. It's not predictable like the regular shops.

I wonder Hanna if you could get a small keyboard and learn a bit at home? I had a neighbour who was about in his 60s who decided to start learning the saxophone and a neighbour of my parents started learning some piano in his 80s. I know it is often easiest when we're kids but I don't think it's ever too late if it is something you'd love to try. I can play just a little piano. I like to just improvise around too and experiment without trying to play anything in particular. I have a synthesiser keyboard actually that I bought second-hand many years ago but don't currently have it set up. I love music too.

I hope all is going well for you and Brucie this week.

Best wishes,

Eagle Ray

[Hanna3]

Hi ER, It can be hard to find a sympathetic doctor who can really help you, it can take a lot of looking and trying before you find one.  

We have a really hot day here around 40 degrees so just staying quiet... yes op shops can be great value aand they're always fun to shop in - it's the joy of the hunt - it's great when you find something really good for such a reasonable price.  The local Vinnies here channels that money back into helping people who are struggling, so I don't mind giving them my money as they do some real good with it.

Trying to look after kitty-cat in this heat with no aircon- I had lunch with a friend at the local club just to get in aircon for a while... poor cat is lying spread-eagled on the bathroom tiles trying to stay cool!  It must be hard with fur all over your body...

I leant two instruments where I lived before, harp and guitar but yes  I'd love to do piano - which is similar in many ways to playing harp as harp is pretty much a piano in upright position - but lessons are expensive.  I might think about a keyboard sometime, good idea!  It would be nice to learn at a real piano and learn the foot pedals though - it's so good for your brain to have to concentrate hard, music is good.  Where I lived previously there was a 90 year old man learning to play violin - he'd always wanted to play one and never got the chance - he knew he would never be much good starting at that age, but he was thoroughly enjoying the lessons and the social contact with the music teachers and staff there was important too.  I thought he was quite brave as it can be hard to start something new as an adult, you feel more embarrassed when you make a mistake.  

[Eagle Ray]

Hello Hanna,

I think I may have found a good doctor and I've booked in to see him. I'm hopeful anyway.

That is so hard for Brucie. It is so hard for animals in the heat. I used to look after my landlords two dogs and on hot days I'd try to make it as cool for them as possible. I did have an aircon unit but it wasn't very effective. One of the dogs coped better in the heat. They were two staffies and one had a particularly solid build and took a lot longer to cool down if hot. He would pant way longer than the other dog if they'd been running around and then stopped to rest. I know dogs don't sweat in the way we do so they have to pant to cool off. I'm not sure how it works with cats but I have wondered too how it must feel with a fur coat in hot weather.

That's wonderful you've played harp and guitar. I play guitar but have never played a harp. I agree, a real piano is really nice. I'm not sure electronic keyboards ever quite get the same organic sound, though some of them are at least pretty similar. My keyboard does actually have a nice piano sound on it, but it's still not quite the same as a real piano. The harp is a beautiful instrument. I actually have a violin I bought second hand and did start to teach myself. However, the bow is shredded at the moment and needs replacing. I've not played it in a long time. It's wonderful about the 90 year old former neighbour of yours learning the violin. And, yes, music can bring about meaningful social contact too.

I hope you are getting through the hot day ok and it cools off a bit soon.

[Hanna3]

Hi ER,

Just a quick reply - we hit almost 40 degrees here today - I got into aircon at the local club for a while but poor old Brucie has been in it all day and he seems tired out.  It's interesting what he is afraid of - the vacuum cleaner or carpet sweeper - my shoulder bag for some reason - I got a high sided kitty litter tray delivered today that I ordered online and the carton scared him so much he ran into another room.  Because I don't know his background I don't know what sort of things have happened to him in the past to cause this.  He's sweet and affectionate.  He likes music playing, I've always found soothing music/singing works on animals.

Your keyboard sounds terrific.  I learnt celtic harp twenty years ago, one of my friends out west is a harp teacher but I could never match her, she's brilliant.  I wish I had learnt an instrument as a child, it's so much easier then - same with learning a foreign language.  I used to know a German lady, very nice, who moved here from there to get - as she put it - on the other side of the world from her ex-husband there!  Anyway she told me she was shocked at our school system, because in Germany the kids learn music theory and a second language from primary school onwards.  I don't think kids here even get any music lessons in primary schools now.

I've been playing beautiful romantic piano music on my car CD player lately - I get stereo sound in the car and it's brilliant!

I am off to feed the cat and myself.  I hope everyone had a good evening!

[Eagle Ray]

Hi Hanna,

Yes, it’s not possible to know what happened to Bruce in the past, but hopefully over time he will feel safer and safer, especially with such a caring owner as yourself. I have complex PTSD so I really relate to animals having sudden reactions to particular things as I have that as well. I find the reaction significantly precedes the brain’s conscious ability to catch up with the fact I’m even in a reaction. Perhaps over time you will start to notice patterns with Bruce where you can make some sense of the things that bother him, whether it is the sight of something, a sound, the size of something etc. I’m so glad he has you and that you have him too with his sweet and affectionate nature.

The Celtic harp is absolutely beautiful! I imagine it could feel very peaceful making those beautiful sounds. When I was in primary school you could learn one of two instruments in the last two years of primary. We had a choice of clarinet or guitar after sitting a music aptitude test and I chose guitar. I think the kids still learn music but I’m not sure of the exact form it takes today. I last worked as a teacher assistant 15 years ago and the kids still had music classes then. It may be less formal than how things are taught in Germany.

 I’m glad you have been enjoying the music in your car. The CD player no longer works in my car but I did enjoy it before. It makes travelling around urban environments where there’s lots of traffic more enjoyable. It makes it more relaxing. I found if I was travelling in the country the engine noise would drown it out a bit, but in the city it was perfect.

 I hope you and Bruce are having a lovely weekend. It’s cool here today with a wind blowing all day. It may be hotter where you are. I hope not too hot.

Hugs,

ER