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.

[Croix]

Dear Wednesday~

Haven't hear from you for a few days, hope you are metaphorically keeping your head above water. Have you written much in the last few weeks? I've put a couple of thoughts in the Happy Memories thread. Rob Gruffudd is the real storyteller there - he comes out with all-sorts.

Actually a number of people have left thoughts there, pretty good really.

Sumo cat is out of sorts. We've had some rain, so he sits by the door - which is on a hook -and looks out though the gap at the rain while nice and dry inside. His whiskers just bush the edges of the gap, which means the rest of him will too if he decided to go out. He's grumpy.

Hi L.G., how long till the op?

Take care

Croix

[Guest_9809]

Good morning Ava. That is pretty slack that your GP still had not received your psych or other hospital reports by the time you saw her. Ample time for them to have had their paperwork in order. It is most definitely not an excuse that you are in the supposedly too hard (chronic illness) basket. This makes me really angry Ava!

I doubt very much that you make things sound worse than they really are. I think in fact, that it is far more likely to be the opposite. You naturally tend to downplay your own pain and suffering. So I cant wear that little attempt to make light of your condition Ava. A gentle and all caring reprimand now coming your way. (-; Wink.

I'm glad you are still able to do some useful knitting, and also play some fun games with the Curly one. Reading is also good, and I really need to try harder to find time to do more myself. A little writing you say? What type of writing do you like to do? I havent done much in a while, although I did write a poem a few days ago. It was way too 'dark' to post on BB, so I have since binned it. But I think it helped to get it out of my system. I do find writing and self expression (of any type) particularly helpful in that regard. And art as well, which I find myself becoming more and more engrossed in. My current profile pic is one of my fairly recent attempts at art. I had another one on for a few days, but switched back to this one last night, as I prefer it.

Curly has a favourite treat of bees? Most odd, does he kill them or eat them as well? We have lots of bees around here as there is a beekeeper at the bottom of our block. They have 4 bee boxes, and I often see them wearing their white protective gear when they mow their back yard. I guess the bees dont like mowing much.

Oh, and finally, I totally agree with Carol - nothing wrong with TV. There are some great TV programs, entertaining, educational, whatever you want really. And even free to air TV have so much better options since all the additional digital channels came into being.

How has your partner been lately with his GAD? I hope he has been treating you better than he often does. Did you manage to catch up with children and grandchildren during easter?

Much love to you Ava.

Taurus xx

[Wednesday]

Dearest, Croix and Carol,

Oh Croix what a lovely picture of your youthful wife (I thought she was 25) and Sumo. I do think you give Sumo a bit of a hard time, look how tender he was with your wife. I’m not a great writer so wont post on your lovely thread, maybe later.

Carol are you having an operation? I have no idea what I am watching, I cant remember much about it. TV is company I guess, puzzling?

I just cancelled my physio session, I’m not convinced that they really work. I do like the hydro session though, I can move without so much pain in the lovely warm water. I have another MRI this afternoon and the man to fix the front door lock this morning, (he was supposed to be here ages ago (grrr) it’s an exciting life. P does take me out for a coffee. He can’t do much more to help, no one can really. I think I am really complaining about my loss of independence.

I’ve stopped fighting on all fronts, my carpets are lumpy from all the things brushed under them but it’s more peaceful that way.

My head seems to be a big problem. I‘ve ran out of care plan for the psych. But it was good to go and made me concentrate more on living in the moment. Okay so I still have a way to go on acceptance.

When I think back over the years and I can clearly see the decline despite medications, supplements and every other thing I’ve tried. Autoimmune disease sucks as does the very odd life I’ve lead and the damaging people I’ve met/attacted along the way. With my abusive childhood, there was little hope that I would grow up sane, but now I’m old I’ve done the best I can. I thought I could win and overcome everything. I’ve only proven that I can’t. Genetic predisposition wins out.

I grieve for my children and the cost of my illnesses on them. My son who wants to fix me and though incredibly bright can’t hear about my illness to understand it. He comes up with people for me to see etc. But I don’t follow his advice and he feels angry. My daughter just wants her mum back and I will never be that person again. Both damaged because of me.

It has taken me forever to finish the three jumpers that I have been knitting.Made with love and little skill. They are only a year late but look big so should be okay.

The curly one is always close by. He is far too good at finding his toy when I hide it now, so it has become a test for me to find a new spot. Lucky, he is around to keep me on my toes.

Much love to you lovelies and millions of hugs. xx

[Wednesday]

Hello lovely Taurus,

Please don’t be angry, you don’t need the additional cortisol running around your system. But thank you for being angry. I think autoimmune stuff is just too hard it hasn’t had the attention of some other diseases and isn’t well understood. I also don’t respond to the medications so that doesn’t help. It is quite confronting to look back and realise how despite medications the symptoms keep progressing.

Sweet of you to give me the gentlest rebuff ever! I find it hard to judge against others illnesses.

I write nothing about myself. I like to write short stories and children’s stories. The children are often a little bit naughty but loveable. All children end up knowing they are well loved. I am so please to just about have finished the last jumper. I can’t wait to put all the stuff away and let my hands and arms rest. There are times when I write whatever is in my head, definitely not for sharing though! I noticed your new picture, very clever of you indeed! Do you find it restful to draw?

I am lucky to have the curly one, he is five now, how time flies. I do wish he would leave the bees alone. He was stung recently and had to go to the vets. It didn’t stop him the next day he he ate 3 more bees. Yesterday I could hear him barking at the poor little bees and went out to try to entice him away. In his panic to get his bee treat he somehow managed to flick the bee up into his fluffy ear. It was a funny sort of dance we did. He didn’t realise where the bee had landed and was sniffing around everywhere to find it. I had a broom in one hand and my crutch in the other trying to brush the bee out of the prancing dogs fluffy hair. It all worked out, but really for a very little dog he can get in quite a bit of mischief. He also knows I can’t catch him, grrr.

It appears dogs like humans get more allergic as they accrue stings. I don’t really blame your mowers for wearing protection.

P and his GAD is a never-ending story and nothing changes. I don’t have many friends and they are mostly interstate. I can see how P’s GAD has caused issues for me. I didn’t invite people over to help friendship possibilities because it was such a saga. Now I don’t meet people to invite over.

I did see my daughter and grandson at Easter. They didn’t stay with me. She told me it is too hard to stay here. None-the-less it was lovely to see them. What about you did you have any visitors? By the way how do you feel now about resigning your job?

Love and hugs, xx

[Wednesday]

I'm shaking,

I write because I don't know what else to do.

I cant figure out what to do. I'm supposed to call my doctor but can't face anymore medical news.

P got angry. His family stuff is a quagmire of distress for both of us.

[Guest_9809]

Hi there dear Ava.

Firstly, writing is beneficial in itself, so I hope you have found that simply by writing stuff down, it somehow takes away some of the power of it, as well as the feelings of hopelessness?

Its been a week since we last heard from you, and it sounds as though things have not improved for you.

Okay so you are shaking. Is this due mainly from physical pain, or emotional distress? Or perhaps both? A bit of mindfulness should help either. If you are able to safely hold a cuppa, go and make yourself one. And then sit comfortably and concentrate fully on that cuppa. Feel the steam drift into your nostrils as you inhale the aroma. The warmth of the liquid as you sip it and the taste as it slides over your tongue. In between mouthfuls, look at your cup. Note the patterns, the colours of the cup or mug, the colour of the tea/coffee inside the cup. Breathe calmly, in and out. Note the sound of your breath as you inhale and exhale. Where is the Curly fellow this afternoon? Pat him, feel the texture of his coat, the warmth and comfort of his body next to yours.

If you are still unable to feel any relief, I would suggest you take your Drs advice and give them a call. I know it isnt what you want to hear right now, but this is the reason they are there. To help you when you need it most.

I am really sorry that the quagmire of P's family issues continue to be a major source of distress for you both. I know its very easy for me to say Ava but really, for both your sakes, something needs to be resolved in this regard. You definitely do not need, nor deserve, this constant source of aggitation and distress.

Please continue to talk Ava.

A loving hug.

Taurus xx

[Croix]

Dear Ava (That's the first time I've called you that, I do see you as Wednesday -but not a Wednesday's Child:)

When the big picture of life is way too hard then concentrating on the little things is a pretty good answer. I can't top what Taurus has just said -a wealth of wisdom and good advice (even if she is overshadowed by that enormous hat)

Please give the curly one a pat for me

Croix

[Wednesday]

Thank you dear Taurus and Croix,

I couldn't stop shaking and crying a coffee conversation had gone badly wrong with P. I have been trying to find a way to see P's grandchildren but it's hard and I feel like I am being supervised by his children. I don't really understand the mess I'm in. I've obviously messed up. I just can't face his adult children and pretend. I’ve always been hopeless at pretending, whatever I’m thinking is written all over my face. I also don’t seem to be able to tell fibs. If I go to family functions it is on their terms and I need to know my place. This means they will treat me as they previously did i.e. as though I barely exist. P is happy with this. I’m not.

I am also totally overwhelmed by all the medicos and I suspect they by me. They all know they are the expert but don't seem to listen to each other. Autoimmune disease are complex, I end up trying to explain one doctors view to another doctors, it's madness and exhausting. My head is exploding with information and trying to sort the genuine out from those that are just happy to take my money . My brain is being damaged by the AI too. Everything takes so very long too. I.e. 'go have an MRI and see me in three months', which is three more months of trying to manage something without all the information.

Good to get that out. Thanks for listening.

love and hugs you beautiful people, cuddles for all pets including the non-allergenic Sumo. xxxx

[Croix]

Dear Ava~

There are times this place makes one feel so powerless as there are not even words.

You have friends here, we will listen and understand. You are a wonderful person with a whole life of experience and wisdom, do not doubt yourself even if others do not give you the respect and deference you deserve

Zeppelin dog has found a mat with a fluffy rim and curls up exactly inside it - no overlap, but no wasted room either. Nasty cat is hogging the electric heater and Sumo has taken over my chair in the kitchen (shedding hairs for when I sit down in my good trousers in the morning). All fatigued by a long day of interesting (to them) activities.

I feel the same, goodnight Ava & curly one

Croix

[Wednesday]

Dearest Croix, you are such a lovely sweet man, thank you for your kind words.

I hadn't realised until now that Sumo cat and Nasty cat where too different cats! Poor Zeppelin dog out numbered.

You my friend are very special and I thank you for your words, they do make a difference to me.

Love and hugs to you and the menagerie xx

PS the curly one would say hello but can barely raise an eyebrow, forgive his rudeness. Two dogs came to visit today and he had an exhausting job keeping them under control! Even worse than this they ate his food, spilt his water and left p-mail everywhere. Gee!