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]

Dearest Taurus,

Thank you for the music, it is good to dance, tho lucky no one an see me! Your post on Every's, thread was great thank you so much. You are right, I have done as much as I can do, just it is never enough.

Hugs to you and tummy tickles for your doggy. xx

[Cornstarch]

Hey Wednesday,

How was your time off, hope you got to chill out and give yourself some positive energy.

I'm sorry you have lots of sad news to deal with at the moment, and it sounds like your husbands anxiety has been a challenge for him too. It's good to get out and do something by yourself if it gets too much. It can feel contagious! My sister and I set each other off at times and then get irritated with one another, but hey that's what families do, we have a lot of stress in our lives so it has to be expected.

Enjoy your weekend, it's meant to be really warm and sunny

xx

[Clues_Of_Blue]

Ava, you made me laugh, telling me to catch up with the wine. I once arrived a bit late to a party, was handed a beer and a funnel at the door and told "catch up". Turned out to be the best way to drink West End - down so fast I didn't have to taste it. Horrid stuff. So wine it is - virtual wine, so everyone can stop worrying. 😉

Sorry to hear various of your loved ones are going through tough times. I know how hard it can be when you do everything you can, but there's more needed than anyone can give. I hope whatever they are going through improves soon.

Music, eh? I can jump either way with that. We can do mellow and jazzy, working our way up to more lively jazz - I'm thinking "Sway" by Michael Bublé, "The Little Man Who Wasn't There (Instrumental)" by GlenN Miller, then more Glenn Miller with a bit of "In the Mood". Or we could go silly and punk, and hop about to some Prodigy "Firestarter", hehehe.

Wishing you better days ahead, and good music to fill them with.

Blue.

[Wednesday]

Hello dear Corn,

Thank you for your post, It has been messy but I can't post because its not mine to post. In short a baby's death, a suicide attempt and a family member losing there way. I'm due for another hospital trip and infusion so my brain will take a dive and hopefully my aches and pains will be subdued. P has been very anxious.

Hugs, xx

[Wednesday]

Hello lovely Blue,

Ugh beer, oo, yuk. I'm okays, very tired and achey, more serious meds soon which will help, so long as I am prepared to give up on my brain that is.

Thanks for the music, love the variety and was in the mood and I needed that silly punk dancing, good bit of dancing there from Taurus too, we've had quite a dance party.

I think it is time for something esoteric and beautiful, what about, a beautiful French champagne I always wanted to try (Absolutely Fabulous's) Boli darling, sipped slowly listening to The Flower Duet by Lakme, followed by Dvork's Song To The Moon and then Bizet's The Pearl Fishers.

Thank you all you lovely party goers, for giving me much needed fun time.

Love you guys, hugs. xx

[Guest_9809]

Oh Ava, how awful for you and your other family members. Death of a baby, a suicide attempt and someone losing their way - that is such a burden for all of you to carry. I am so very sorry.

That song you suggested "Song to the Moon" is very appropriate since I heard that the moon is the closest to Earth that it ever comes. Yesterday and today I think. So it will be the biggest, brightest and largest moon we have seen in many many years. And it wont be seen again like this until something like 2034, I think.

I hope your next infusion works better than your previous one did. With luck you remain healthy until such time as you have the infusion, which should make it as effective possible. Will Happy be okay to stay with P while you are at the hospital?

Okay, now .... onto the French champagne. I have never been a champagne drinker, in fact no fizzy or sparkly drinks at all really. But there again I've never tried the really good stuff either. I'm sure you've given us only the very best here, so it could well be worth trying. Cheers.

Ava, I hope this incredibly difficult time becomes less of a burden to you and yours soon. I know that the loss of a child brings incomparable grief and heartache, but no doubt these people have others who still need them. And hopefully they see that and know that they need to carry on, no matter how difficult it seems right now.

My thoughts are with you and your loved ones.

Taurus xx

[Lost_Girl]

Dear Ava,

I am so sorry to hear of the tragic news of late. There really are no words but know my heart goes out to you and those involved.

Is it the same infusion that you had last time? I am hopeful that it will in some way provide some relief for you.

I wish there was more I could say.

A gentle and kind hug here for you. Thank you so much for the support you give, even when your own burden is overflowing. You are so gracious and kind and truly a wonderful support. Thank you for being you xx

[Wednesday]

Hello dear Taurus,

Its so nice to have you around. I'll do the best I can for my lovely, hurting, family and friends. There are somethings no words can help, time I hope will soothe.

I missed seeing the moon too much cloud cover, where you able to see it?

Happy will go to a pet sitter, when I have my fifth of this infusion, I think that it is helping, unless I get an infection which overrides the infusion med. Of course the infusion destroys any immunity I gain, umm a chicken and the egg situation. The two weeks prior to the infusion I struggle a bit more as the infusion med wears off. So pretty tired at the moment.

There is something new in Australia, its too hard to explain here, it's expensive and complicated. I'm not sure what to do. Try the new stuff from the USA or keep going the way I am. There are no answers or assurances for any of the meds. Boy I am so tired, must have been all that dancing!

I've not resolved P. My daughter asked that we go to them for Christmas (interstate). P is staying here to be with his family and I am going to be with my daughter and her family. It's the first time she has asked and has previously come to us. I don't really understand why for one year he can't change his Christmas arrangements and I am to worn out to argue. Yet in other ways he is trying, but Ive lost trust that he will keep his word around family stuff.

How are you going dear Taurus? Is life treating you better?

Hugs hugs dear one, xx

[Wednesday]

Hello dear Carol,

Thank you for your ongoing support, despite all you are going through. It is kind of you to thank me for giving support given that you do the same wonderful job. It is always easy to ignore my stuff, it seems trivial to what many others are going through. There is not much I can, but if some time on the forums helps someone, I feel useful.

Yes it is the same infusion, I've come out in a itchy, icky rash as the last infusion wears off. Any day now a bit more energy and no rash, woo hoo!

How gorgeous is little Storm and you even colour coded his toy! I hope today is little better for you.

Hugs my sweet, xx

[Clues_Of_Blue]

Ava, you made me laugh with your reaction to beer. I don't mind one occasionally, just not West End. Cheap and nasty, it is. I'll join you in the French champagne, instead. Funny you should mention that, I had a glass of it for the first time in years, not long before you said it. I've been on holiday with my partner and thought it fitting.

I'm listening to your suggested music selection on YouTube. Sir Pecks is loving it, sitting on my monitor, chirping up a storm. 🙂

I'm sorry you're having such a tough time lately, with your health and family, and with such tragedy around you. Though I am glad to see your humour and sense of fun are still there. The pains will ease in time, and I hope these moments of silliness will still raise a smile as you remember.

Have you talked to your doctor about the new treatment option from the US, and the risks and benefits? You probably have, sounds like you're always on the look-out for any information that could help, which is good. I hope the options for improving your health continue to expand and look brighter. Medical technology, fortunately, is always coming up with new innovations.

Thinking of you, and here to listen and/or just make you laugh if you need it.

Blue.