I'm not managing so well anymore

[Wednesday]

I am finding it harder and harder. I’m told I’m positive and resilient and maybe I have been. I’ve managed with the help of AD’s to get through. Now I am so ill I can hardly get out of bed. I spend too much time in hospitals and around doctors. Yesterday I saw a public hospital doctor that seemed to take delight in making me feel like a nuisance. He smiled and made smart jokes with his junior doctor at my expense. He didn’t listen he was so horrible and rude. Too many health issues, too many medications and too many doctors.

I have such a little quality of life. While not suicidal now, I am incredibly sad and can’t see a way out of this. The medications I take for auto immune disease have destroyed and made unrecoverable my immune system. I knew this when I agreed to take them, but I didn’t realise that it would mean I would always have some sort of infection, like last week’s pneumonia. Of course antibiotics are no longer useful and I can’t develop any new immunity. A trip to a coffee shop can send me back to hospital.

My friends and children are lovely but dispersed and not close by. I don’t say a lot because well it’s bloody boring and I’m sure it is more than they all need to know about. There is nothing anyone can do. They try with their suggestions of a new exercise or superfood, this dosen't help. They don't listen, it's too complicated so I don't bother explaining. I get comments like oh yes xx had pneumonia and they are really well now. that's great for xx. Or if you follow this exercise routine your blah will get better. If only I could get to the gym I would be there twice a week. Or take magnesium etc, yep I know all this. I know they are flailing around and trying to help but it feels like they are out of their depth and just saying things that aren't helpful. I don't stop them or try to explain anymore. Over the phone they can't see me so its easy.

My partner is away and to self involved when he is here to understand what I am going through.

I’ve been so independent all of my life from when I was a child. I don’t know how to manage this, how do I get a life? I’ve tried joining classes but I end up getting ill and not being able to attend. Maybe this really is as good as it gets and all the doctors and medicines in the world are not going to make me well.

I guess that is the outcome that I need to come to terms with. I've always believed in quality over quantity.

I’m sorry, I just needed to get this out.

[Wednesday]

Hello dearest Carol,

So very lovely to hear from you.

My grandson keeps me laughing and learning, though those red and green lights are a puzzle. Naughty of me I know but I am even amused by his attempts to negotiate with his parents, it’s so much easier being a grandparent. Thank you for your very kind words. Hospitals and doctors, aghh. Now I have added a psych to the list to help me work my way through this mess. Dam it she wants to talk about my childhood etc. I said that I much preferred to leave a good part of my life securely locked in a chained box at the bottom of an ocean. She thinks this is a mistake and it is my interesting history that has made me so ill, sigh.

Sadly I have now finished the Good Wife, such a fabulous series, thanks for the suggestion. I might have to start watching again to get over my withdrawal symptoms.

Oh fabulous, I am so pleased that Storm has been such a good and adorable addition to your home. I was a little worried about any allergy side effects?

Dear one I am so sad to read that you are having a low time and dealing with pain. I can understand that the holidays and extra family time is overwhelming. What is happening with Dr pain and your team? I shall liberally sprinkle fairy dust around to make you smile and quieten noisy children. I’ll hide some Haigs chocolate in your bedroom draw so you don’t have to share. I’ve also picked you a small purple, yellow, white and green posy of non-smelly non-allergenic flowers from my garden.

Much love and hugs to you my dear friend. xx

[Croix]

Dear Wednesday (plus LG if peeking)~
I hope hospital was tolerable. Do you take a tablet (no - the electronic kind) with you to watch and write?

I too am delayed by a day getting back to you as I tried to post to someone in distress yesterday and bought back most unwelcome memories of my own (the full cinematic experience but with no sound – not good but quite preoccupying even so). Took a while, and a trip to the movies shepherded by my wife, to get back on a more even keel.

As I think I mentioned this tiny text world has thinned my skin right down – mind you I wish the rest of me was similarly reduced. Regarding that walk I got out the next day for one - and made the end of the street which is a GOOD THING, the restrictions I mentioned are only temporary when they hit and most of the time medication prevails.

The up-side of the triggering was we saw Collateral Beauty, a most excellent movie, one of those the critics in the paper gave 0.0001 out of 10 to. Just shows that critics are a bunch on whom anything other than ‘action’ films are totally wasted. (Margaret Pomeranz and David Stratton were good – but they’ve vanished – sigh)

The film follows a man (Will Smith) who copes with his daughter's death by writing letters to time, death and love. Amazingly it has an unexpected happy ending. Well thought out and acted – 10/10 on the Croix scale – even the East German Judge from the dim distant Olympic past would have been impressed.

The Zeppelin dog appreciated the pat, but frankly was more interested in depriving the sumo cat of its lick in a mostly empty sardine tin – competition of the species I guess.

You are quite right about being Australian, a blessed advantage when one sees all the ruined trouble spots on the box (though I doubt the French I met would have agreed - Vive la Patrie!).

Hannah Kent – how can you win an Unpublished Manuscript Award? Actually she has been on TV and also the Science Show about her research, I remember, however I don’t think I’ll be tempted to sample her efforts. They do not fulfill my golden rule.

What are you going to read next?

Maybe it is the natural course of life that disappoints your adult babies – not you.

Have a hug

Croix

[Wednesday]

Hello dear Croix,

I'm sorry that your attempt to help another brought you undone. Dearest Croix, you do need to be careful and look after yourself a little better after all another one of your golden rules is about making sure you put your mask on first! My BB friends are very precious. I hope that you are okay. anytime you want to chat, come and do so. Bless your young wife for looking after you, hugs for both of you.

No I don't take computer type things in to the hospital with me, even reading becomes difficult. Hooked up to a drip also doesn't help. My veins are little problematic and the nurses are having to become more inventive about the placement of the drip. This time they landed in my hand which meant every time I moved my hand the dratted pump stopped working, because I caused some sort of blockage. I gobbled my lunch at these times before the nurse could get back to me to reset the machine. I also get very tired, a med side effect or something.

I smiled when I read Zeppelin was able to win over Sumo. I've always thought that cats are more likely to win in any dog cat fight, wrong again! Unless Sumo was just not all that hungry?

I am watching 'Eat drink man woman' it is an old Chinese movie about a dad and his three daughters, have you seen it? I haven't got to the end yet but form memory I think it has an happy ending. I've seen Collateral damage advertised and Will Smith does those type of roles well, but I'd have to get my act together to go the theatre.

I am currently reading 'the life of trees' and will head for a novel next. I was just looking at Fishpond to see what is around, far too many to choose.

Ah yes you may be quit right about the natural course of life. I also think that the journey of each generations young is going to be different. There is something about my adult babies (AB) that thinks that have life all under control and it is just fine the way they like it. Maybe I should look more carefully to see things through their eyes? Definitely mum on crutches etc is not part of their planned life. may I was also like this. Do you remember the Mark Twain quote “When I was a boy of 14, my father was so ignorant I could hardly stand to have the old man around. But when I got to be 21, I was astonished at how much the old man had learned in seven years.” Maybe I need to add ten-twenty years or so on to his thoughts for my AB's?

Hugs, xx.

[Lost_Girl]

Dear Ava (and Croix),

I have been avoiding people, not because I am slipping back into depression but because my family are all home for the school holidays and it is becoming overwhelming to have sound and noise all day every day. I am missing quiet times for some inner peace despite how much I love them all. Two more weeks 😉 Thankyou so much for the fairy dust. I am keeping the chockies hidden away and the flowers are beautiful, I have placed them in a spot that I look at most of the day xx

I am glad you have a psych on your team Ava but sorry she wants to dig up things you would prefer to leave alone. Do you think there is any merit in what she says about it contributing to your illness? I hope she is gentle with you.

The Good Wife really was terrific. I miss it too. They plan for a spin off but I don't think it will be the same. Towards the end where she stands in her home and imagines who should be there to welcome her home..... tears from me. Her acting was superb when dealing with the raw emotions about Will.

Suits is quite a good show. It is not in quite the same category but enjoyable none-the-less.

I am so pleased that I can even put my face in Storm's fur and have no allergic reaction. She doesn't shed at all, even when I brush her, there is no hair on the brush. I had been very worried about the possible side effects. Very happy with the result. She is such an integral part of the family now.

Thoughts on your adult babies - I know it was a terrible shock to me when my parents became ill. When I started looking after Mum, I had to grieve once for her knowing she was terminally ill, then a second time for me for having lost the strong, active pillar of strength who had always looked after me. It is hard seeing your role model falter, be vulnerable and become fragile. I just wanted her to be as she had been. That in itself was hard but then having to role reverse and look after her, to be the strong one, it was very overwhelming and I didn't feel ready. In a way I felt I was failing her for not knowing the right things to do and say. Though I know she knew I was doing my best. This was all before I had my own children. It is just hard seeing parents unwell. So saying, it doesn't excuse your son's behaviour.

I will write an update on my thread. Croix it is Chronic Tension Headache Diagnosis and Ongoing Management in the Long Term Support section, thanks 🙂

Much love to you xx

[Wednesday]

Hello dear Carol,

School holidays what a nightmare for you, so much going on and noise, ear plugs? Baby steps dear one.

My psych is nice. But dam it since seeing her I've had minor flash backs just settings no action (odd), but I do not like where this is going. Memories are for me at least better off hidden away. She seems to believe that my history contributes to my disease and that I wont get well until I face it. I can't see how, they just send me into a spin down a deep dark hole with glass embedded slippery slope.

I did see my functional GP who had some tests results back. It's complicated but basically I have a range of issues that will probably be overriding the effects of the infusions, hence they are not working too well. Of course the meds I take are doing damage too. She says we have to work with all problems at the same time. More tests are still due and will help to clarify things. My unhelpful (disease creating) genes have been turned on at some time, so the psych maybe right after all.

Oh yes the Good Wife had a great ending. Though I never did get the link between Diane and her man, opposites don't really attract. I've watched suits but it isn't as good. House of cards is clever, both English and USA versions. I'm now watching and enjoying Crown.

Wonderful news that you are not having any allergic reaction to Storm, well done Storm, woo hoo!

Dearest I am sure your mum and dad were very aware of your kindness when they were so very ill. I am sure that whatever you did or said and the love you showed them was perfect for that moment. So sad you lost both parents so close together.

Oh wise one you are quite right about the AB's behaviour. I spent at lot of time when I visited my daughter resting or slumped in a corner with nothing left to give. She hated it. There is nothing I can do. I want to tell them about the genes they may have inherited so they can get onto managing them sooner rather than later, but I don't feel like I can. I was the mum, that fixed the roof, built kitchens and worked multiple jobs while looking after them, that is how they want to see me now. I have made the mistake of saying too much before to my daughter and she just can't cope, because it hurts her to much to see me ill. I never said much at all about my life as I was raising them, there was nothing good to say. Apparently I never even said a bad thing about their father, despite his atrocious behaviour.

Lots of love and hugs, xx

[Croix]

Dear Wednesday (plus LG & Blue if in the area)~

You sound in need of distraction, have a memory:-

The Trapdoor
The boy is dressed in tight jeans, brown lace-up boots and a flecked rough wool jumper over a white shirt. He is not yet a teenager and slightly portly.

He looks at the entrance to the church, Norman as the archway is completely rounded. Walking to the aged door with curlicue hinges and pushes it open. Empty inside, not Sunday and Matins is memory. Incense still lingers.

Walking quietly down the vestibule to the nave, nodding briefly to the altar then turning and looking at the choir loft.

Climbing the rough wooden stairs to the loft past elaborate marble plaques citing virtues of those deceased local great families, he reaches the first stage, with pews, organ and a cunning arrangement of six ropes hitched to a timber on the wall. The ropes lead up towards the bell-platform and disappear into holes.

At the back by the

West stain-glass window is a ladder. It’s made of two immensely long thin springy wooden tree-trunks with flat boards nailed across as rungs. It is old; the wood is white, the rungs powdery, the nails hand-made. A saint gazes blindly across from the window with raised hand.

The boy is reluctant but dragged on by stern roles models Bulldog Drummond, Dan Dare and Capt. Biggles he starts his climb. Hugging the ladder to him – it flexes disconcertingly - and staring fixedly upwards. The bell-platform approaches and then he is though the square hole and scrambling onto the wormy oak rafters. Relief pounds.

Here he sees the six bells, firmly held by rotten ropes - unable to swing round on their axles. The six ropes he noticed before lead to six hammers, one for each bell.

The clock, enormous, complicated, made of hand-drawn shafts and plates is silent. The winding piece broken with the wood handle splintered.

There is another ladder, much lighter than the first, with some rungs broken and hanging in two pieces off their nails. The boy, still wound spring-tight, ascends and putting his shoulder and head to the trap-door efforts it open till it swings back with a crash and shower of dirt.

Daylight floods all and the boy completes his climb, out onto the ridged lead sheets covering the roof.

He rests his hands on the battlements and looks down at the churchyard, the gravestones, the paths, the grass, the walls. There is a strong cold breeze.

Having his fill the boy turns, the trapdoor a mouth to a fresh journey.

[Wednesday]

Thanks Croix.

xx

[Guest_9809]

Good morning Ava. We havent heard from you in a few days and I was just wondering how you are getting along?

Not sure you've met my little dog Tammie yet, as per my new profile pic? How is your girl, Happy, getting along? Have you been able to get out and about lately for any short walks at all? Otherwise perhaps you are able to have a bit of a play in the back yard or house to give her a bit of exercise. Does P take her out for walks if you are unable to? Tammie likes to play with her soft toys inside during wet weather, which is good because she still gets a bit of run and fun. She plays fetch and is a great little catcher, flying through the air to grab those soft toys of hers. The picture here is of her waiting in the hallway to be thrown one of her toys, all eager and excited.

Ava it sounds as though your psych visits have been stirring up some traumatic memories for you. I know that isnt nice, but they will argue that you need to process those memories in order to allow them to be re-classified and filed as 'old stuff' and thus no longer a threat or as distressing to recall. I would encourage you to proceed with your appointments, even though you may well feel worse initially. In time it will ease, and who knows, perhaps it will also have a beneficial effect on your physical health as well. Kind of purging the mind and creating a healthier body. Trauma and its aftermath can poison the mind and the body.

You mentioned that you would need further tests to determine 'where to next' with regards to your GP. When do you need to have those tests? I hope it provides some answers and a clear path as to what they need to do to make things easier and less painful for you.

Okay, so I must go. Lots to do here.

My thoughts are with you Ava, and a gentle caring hug is being sent through to you as I speak.

Taurus xx

[Wednesday]

Hello dear Taurus,

Tamie looks very sweet and I am sure is great company how long have you had her? My lovely curly one is doing fine, learning more and more tricks, which is what I use to keep him from getting bored. He is just back from the groomers and looks very spiffy! It wont last long and his dreadlocks will reappear, I quite like his hair looking a little less perfect. I've been hopeless at taking him for walks of late. P does take him for some walks. It is a bit hot at present anyway. I can't seem to get my hip knee and ankle all going in the same direction, very odd. I get a bit worried about falling, which ends up being a big deal to put me back together again. The steroids are helping though.

Aghh the psych, I am sure you and she are right in what you say. But I'm too old to have to see those pictures around me all the time. Probably better I don't walk too far I might see a church and be tempted to throw a rock at its stain glass window. I've a rotten aim so probably no harm would be done. But the pictures in my head are not readily going away. Going to sleep means closing my eyes, which is not good. I decided to see the psych to find a way of dealing with the illness stuff, not my past! I should have know better once they hear any of my history they want to go right back in time. I still can't see how it helps and much prefer the locked box method of dealing with the memories. I also know there is more to dredge up. As you know it doesn't make day to day living, too old I say.

Doctors, another two hour hospital session on Wednesday, I really can't be bothered. I need to keep waiting until all my test results are back before making any decisions, they seem to be very slow, peak period I guess. I can mostly control the amount of pain with the meds. But it is a scary path to go down.

Thank you for being you. Such a thoughtful, generous and kind woman.

Hugs, xx

[Croix]

Dear Wednesday~

I haven't spoken to you for a few days and wanted to find out how you were faring.

While snooping though a previous post of yours (walruses tend to be a nosy species) I noticed that you too think about the 'locked box' method of dealing with some memories.

I've been thinking about memories, and how sometimes recalling something that happened that I enjoyed or looked back on with fondness has helped me to get though an otherwise rather bleak patch.

I'm thinking of stating a thread in the Staying Well section called "Put you happy memories here" or something like that. A place to write down things that are happily remembered from the past, or give comfort.

I'm still mulling over the concept, if I went ahead would you mind if I 'borrowed' my couple of memories back and duplicated them there? Of course you too would be more than welcome to contribute. You've already told me some of your happy times.

Good luck with the tests

Have a hug

Croix