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, Quirky,

Quirky that must have been so hard for both you & your mum, especially over such a long time.  Thank you for sharing that, dementia is such a cruel disease.  I do try to be as open as I can be on such a public forum, because I know how alone I felt with my mental health issues until I found these forums & I hope that by sharing my ups & downs (along with some silliness & fun) it might make someone else feel less alone & maybe even reach out for support.

Croix you are right that the one blessing is when the person with cognitive issues isn't really aware of how bad things are.  You do have such a gentle way of sharing your experience of your partners illness.

ER being so far from the palliative care hospital my sister (1) is in is hard.  I have been speaking too her on the phone, but of course that is not the same as seeing her.  She has her daughters, hubby & our other sister (2) visiting her & we try to keep all visits (whether at home or in hospital) pre organised so that we don't all turn up at the same time & overwhelm her.  I'm taking my other sisters(2) advice & not (at this stage) planning a visit to the hospital just yet, mainly because she says access is difficult & very roundabout due to building works & my sister(2) thinks with my mobility issues I would struggle to manage it.  But if it is decided she (1) is not going home I will go see her there.

Croix I did chuckle at your poor Foxy dog almost becoming a pupsicle with the cold.  Last night & this morning we finally got some proper winter rain at last.  I'm keeping everything crossed it continues.  I had visions of Croix trying out “special fluffy wuffy muffin wuffin” on Sumo cat & it not going down well.

ER I much preferred the north of Wales on my trips there.  The south was much more urbanised & dare I say English in character.  I found Scotland very similar in that respect. 

None of my grandmothers, nor great grandmothers worked, but in the earlier generations most of them worked throughout their lives.  Some worked as weavers (in their own homes & before industrialisation), some in the mines, some as agricultural labourers.  Pre industrialisation most of my ancestors lived rurally in small villages & if they survived childhood lived long lives.  My family bucks the general trend in that those born since the mid 1800s have lived shorter lives with each succeeding generation.  

ER it is a pity you can't share some of your photos here.  

Stay warm & dry

Hugs

Paws

[Croix]

Dear Paws, ER and Quirky~

I"m afraid my speech with Sumo cat is limited to such phrases as "Would Sir prefer the sachet or canned fish for the evening repast?"

If I had the temerity to say “special fluffy wuffy muffin wuffin” I would get the sort of hostile unbelieving stare I get when I open the outside door to wind, rain or freezing" as if I'd taken leave of my senses.

Yes, ER, one set of grandparents lived at Holyhead (near South Stack) , where the steamers ferry people to Ireland, the other pair lived for a while at Penmaenmawr . Both places as North in Wales as you can get. Back then at least the coastlines were beautiful and not too full of people. Grandparents formed a large part of my childhood which is why my Happy Memories thread is so full of them.

Paws, palliative care is most difficult time and I'm glad you can share visits with others. It can be an overwhelming burden on one's own.

Croix

[Eagle Ray]

Hello Paws, Croix and Quirky,

Paws, it is good there is a group of family members who can support your sister. Pre-organising and co-ordinating visits makes sense. It has all happened quickly and it has been a lot to come to terms with, especially for your sister. Go gently with yourself as it’s a vulnerable time for all of you I’m sure as you work out ways of managing care and support for your sister.

Paws, you have done such amazing research with your family history. It is wonderful to have that knowledge about their occupations and lives. It’s fascinating isn’t it to imagine what day to day life was like in different eras. I am very interested in my prehistory, so going very far back, where did my ancestors originate from. I know the DNA tests you can take now are revealing more and more detail of people’s origins. I have long felt a connection to western Siberia and Mongolia without knowing why. Then I read a single article that the Welsh, going way back, are descended from the Ket of western Siberia. I’ve not been able to find conclusive further info on this. But the Selkups, who neighbour the Ket, have a mix of Caucasian and Asian appearance, often within the same family. Many of them have high cheek bones and faces that resemble my relatives of Welsh origin. At the end of the day we are all brothers and sisters and connected, and I find it so interesting to learn about the distant past and our common ancestors. I am also fascinated by languages and what we can learn from them, especially the rare ones that only have a few speakers left.

Croix, I can see how important northern Wales was in your childhood with both sets of grandparents parents having homes there. It would have been wonderful to be near the picturesque coastlines. I love your Happy Memories thread and reading people’s cherished memories. It is such a comforting and healing thing to do, I think both the retelling of the memory for the writer and for the reader who gets to be immersed in the lovely memories of others.

Yes, I am sure “special fluffy wuffy muffin wuffin” would be well below Sumo’s dignity. I love the dinner question you ask Sumo, “Would Sir prefer the canned fish or sachet for the evening repast?”. It is far more fitting speech for Sumo. I am now returned from look after fluffy cat and back home from the city. I am having a quiet day with snuffles having picked up a cold. That is another word I like - “snuffles”. That makes me think of the name of a town in Wales called Mumbles. It is not far from Swansea. It is such a delightful name.

I hope today is a good day.

Hugs,

ER

[Paw Prints]

Hello ER & Croix, wave to everyone,

Ahh yes  "Would Sir prefer the sachet or canned fish for the evening repast?"  sounds good, but I would have expected something more like you catching the fish freshly each day & carefully removing any pointy bones before serving on a good quality china dish.  I think Sumo cat needs to complain to the right authorities about his below regal repasts.

ER I have a love of history & how the ordinary person used to live, which is one of my motivations in tracing my family history.  I have learnt so much about things I never even thought of before, such as how the attitudes & laws associated with being poor & in need changed so much over the centuries.  Things like food, housing & child labour varied so much from region to region.  So far I have only been researching in Scotland, England, Wales & Australia.  Despite starting my research back in the 80s I still haven't started on my Irish forebears as I keep finding new people & new ways of living with the families I've already started on.  It is so much easier these days with so much online, though the more obscure sources still need the pre computer ways of research & unfortunately the shoddy/shonky sources around have increased.  I haven't done a DNA test yet.

More lovely good soaking rain here.

Hugs

Paws

[Croix]

Dear Paws, ER and Quirky~

Believe it or not Sumo kindly does exercise latitude in his diet and does not insist on fresh-caught provided the food is more expensive that human equivalents. Spode is of course the bone china, goes without saying.

Paws, I found when my MIL was in palliative care that she could be insinuated by the simple comings and goings of staff, not so as to interact with them, but just the bustling backwards and forwards. Often staff would ask if the door should be closed however it soon became apparent she was occupied wiht the goings-on. People often think that the situation calls for quiet, however everyone is different and I am not sure there are any hard and fast rules.

ER I'm pleased you like the Happy Memories thread - anyone can contribute (hint:).  I'd no idea Welsh Walruses came from Siberia, and I'm sure the language has no chance of dying out with TV in Welsh and being taught at schools.

It was one of my frustrations as a lad to be dragged to various Aunties' kitchens where I was supposed to 'be good' even though I was not able ot keep up with thier conversations. The worst time was when they all fell silent, looked at me, then looked away again  and resumed talking. I'd never have any idea what comment was passed.

Sorry about the snuffles -I guess you are covered in fur too.

Croix

[Eagle Ray]

Hello Paws, Croix and All,

Paws, it would be very interesting if you did have a DNA test and it added further insights into your research. I think I will definitely do it at some point. I want to find out if my intuitions about where I think I might come from prehistorically may actually be true or not. There is another really interesting group of people in western Russia, the Udmurts. If you look them up you will see they look like many Scottish, Irish and Welsh people, especially with the red hair and freckles. There is a strong genetic link between all those places apparently with regard to the red hair. It will be interesting for you to explore the Irish ancestors too. I have a bit of Irish. I also have Cornish ancestry along with the Welsh, Scottish and a bit from eastern England and also Manchester. Welsh is the most followed by Scottish. They have passed now, but I was taller than four of my father's sisters who were all under 5 foot tall. Years ago I saw a program that said the shorter people in Wales are not actually Celts but descended from pre-Celtic Stone Age people. I have wondered if I come from these people.

Croix, I can relate to what you say about sitting amongst a group of adults and finding it hard to keep up with the conversations. Even now I can struggle with this though I am much better than I used to be. I have always had trouble taking in the spoken word. I hardly heard a thing teachers said in school and often had to look around at what other kids were doing to figure out what we were meant to be doing. I still did ok at school and I seemed to learn by some kind of osmosis, like I just absorbed things subconsciously. I am finding listening to podcasts has been very helpful in training my brain to listen to the spoken word and actually take it in. By choosing topics I'm really interested in, this seems to help me pay attention and follow the discussion.

I might add something to the Happy Memories very soon. It is a really good idea. It's like a reminder of the good things we have experienced and when we look for them there are many.

I'm snuffling away and, yes, there is fur attached to the things I had with me when looking after fluffy cat. My camera bag is covered in her fur. I'm not quite sure how this happens. It's almost as if fur was drifting through the air. My snuffles are not a cat allergy though. I saw my friend and her baby who have been sick with the snuffles and I am sure that's where it's come from.

I am glad you are finally getting that soaking rain Paws. I remember you saying how it was still dry underneath the surface of the soil so hopefully now it has really soaked in. It has been very windy here the last couple of days.

Take care and warm hugs,

ER

[Croix]

Dear ER, Paws and All~

If hte Welsh originated in Siberia htey must have had an awful long trek to get where they are today, the other side of the world. It reminds me a bit of Jean M Auel's books "Earth's Children" who made long and arduous journeys in prehistoric times.

ER I hpe your camera has not fur inside, a tricky to to clean I'd imagine. Is it a digital single lens reflex? I prefer the ones with an aperture rather than a screen, I find the sun washes screens out at times.

Pity I can't lend you some rain Paws, we have fare more than needed.

Croix

[Paw Prints]

Hello Croix, ER, wave to everyone,

My sister is home.  They have managed to get the necessary aids & of course the nurses are visiting daily.  At this stage I'll be visiting her on Thursday, all being well.

Croix I will happily have your rain.  At least the rain I did get was enough to start the creek flowing again even if it is "just" flowing & it was good to get some water in my tanks.

Of course it must be Spode china, anything else would be below the dignity of a cat of Sumo's standing.

Fur does manage to get everywhere & when you think it is all gone it mysteriously reappears.  I'm still getting Woofa's fur popping up here & there.  

My family are all short on both my parents sides, especially the females.  I was so pleased when I finally made it over 5'  I actually made it too 5' 1 & a bit". yes the "bit" is always included when I give my height.  The majority of my ancestors are Scottish.  We all have brown hair, but when the males in my family grow beards the red hair comes through in the beard.  It actually comes from the Norse & Viking peoples as all of the far north of  Scotland & parts of Ireland were not just settled by them, but were part of Norway & a lot of trade crossed the seas between them.  It is why until recently most people on Orkney & the Shetlands spoke Norn  (a Norse language).  The Scottish continued the Norse custom of the females retaining their maiden name when married, which can trip up people new to researching their family in Scotland.  

ER I hope your snuffles are easing, they do seem be doing the rounds.  

Hugs

Paws

[Eagle Ray]

Hello Paws, Croix and All,

That is wonderful your sister has been able to come home Paws. I'm sure she is really glad for it. It's good to know she has that daily support from the nurses. Just being in one's own home environment is comforting.

Croix, I'm hoping my camera has no fur inside. My previous camera was a dslr and this one is mirrorless, but it still has interchangeable lenses and can get dust on the sensor. There are actually two dust spots on there now that I can easily remove in post processing on my computer as they currently appear on images. I haven't tried to clean it yet as it is a fiddly job that needs a lot of care.

Paws I am also 5'1. I am probably marginally shorter than you as converting from cm I am officially 5.0853 feet. The Orkneys and the Shetlands are other places I'd like to visit. Again they attract me because of their remoteness. I have heard winter in the Shetlands can be grim though with constant darkness and howling winds! I didn't know about the Norse custom of females retaining their maiden name. My Scottish ancestors migrated from the Isle of Skye to Australia because of a potato famine (similar to in Ireland). From before Skye, from what I understand, they were from Perthshire going even further back. I find the Picts fascinating who were in that part of Scotland ( I think eastern and northern parts). They created those intricate stone carvings. They were apparently small people. Billy Bragg has a song called "A Pict Song" based on a Rudyard Kipling poem. I like it because it is about little people defiant in the face of potential conquerers. I met Billy Bragg once after one of his gigs. He is a really nice, down to earth person.

Croix, I am just remembering that I read a couple of Jean M Auel's books years ago. I think it was Clan of the Cave Bear and the one after that. My housemate at the time had them and I borrowed them. They were an interesting reconstruction of prehistory including those early interactions between homo sapiens and Neanderthals. The DNA tests that are done now actually show detail going back that far and some people are finding they have Neanderthal and Denisovan DNA in their ancestry. I find it amazing to imagine the world back then when the footprint and impact of humans was much smaller and the world was all wilderness.

Thanks Paws re: the snuffles. They morphed into a cough the last couple of days but I feel I am turning a corner with it and tomorrow I will be even more on the mend.

Hugs,

ER

[Eagle Ray]

Hello dear Paws, Croix and All,

I just carefully composed a reply but the internet seems to have eaten it! I have no idea what happened as I definitely posted it.

Anyway, rather than try to retype it now (and it may appear belatedly tomorrow if stuck in the system), I can redo it tomorrow. I just wanted to say Paws I am so glad to hear your sister is home. It is a comfort to be in one's own home and it is good to know she has that daily care from the nurses.

Take care all and sleep well.

Hugs,

ER