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.

[Clues_Of_Blue]

Yep, depression has a way of disconnecting you from the present, gets you ruminating on the past, or worrying about the future. It can be hard to focus on the little things in the here and now.

Glad Sir Pecks was good company, and helped keep your mind off things. Bummer about your argument with the stairs, though. Might not be psychological, you could just have a clumsy streak like me. I'm covered in bruises from work, just bumping into things and getting my hands caught in crates and the like. I'm sure Sir Pecks just zoomed off somewhere safe for a minute and was back as soon as he realised it was safe. And no doubt he did a big poop on the stairs by way of telling them off. 😉 Hope you're healing okay from that little mishap.

My lovely man and I are doing well, off to see him tonight in fact, so must be on my way. Will check in to see how you're going soon though.

Blue.

[Guest_9809]

Hello Ava. We havent heard from you in a couple of days, so I am worried about you.

Are you still in hospital, or are you home recuperating now? Either way, I wanted you to know that I am sending you lots of healing wishes and kind thoughts.

Hope you're feeling better by now, and I'm sure everyone here hopes to hear from you again soon.

Love and a big hug to you.

TS xx

[Wednesday]

Hello all lovelies,

Code Blue is jus an incident in the hospital.

I'm fine, med issues, life sometimes sucks. Just need to figure out / care about next steps.

love to you all, brain to muddled to figure out how to talk about me at the moment.

xx

[Guest_9809]

So pleased to hear back from you Ava - I was getting worried.

I hope soon your brain is a little less muddled, which may help in figuring out your next step/s.

My loving thoughts and healing wishes are with you.

TS xx

[Lost_Girl]

Dearest Ava,

Sitting on the sidelines while you battle through lovely. I have a big bunch of flowers waiting for you, some champas on ice and dance music ready for your signal.

I hope you get the rest you need for your body and mind to get through this. In the meantime I have posted the local firefighter fundraiser calendar up on your wall to give you something to look at. Can't hurt to have fire fighters nearby hey!

Big gentle hugs xx

[Wednesday]

Dear Taurus and Carol,

Taurus I'm still muddled, I'm having a reaction to my meds and overwhelmed by the decisions to be made.

Oh Carol you are deliciously naughty, but I do like the calender!

I not up to much at them moment but am looking forward to the treats. thank you her so much.

Thank you for your support kind, lovely, ones.

Hugs to you both. xx

[Guest_9809]

Hello there lovely Ava.

Its a couple of days since we heard from you, and I have been wondering how you're getting along.

I realise you had some decisions to make regarding your meds and possibly other treatment. Although I dont know if those decisions needed to be made in the short term, or whether it was something that could wait.

I know things are even more difficult for you right now than it usually is, so please dont feel you need to respond to my post.

I really just wanted to remind you of how much you are loved and appreciated by everyone here on BB. You have helped so many of us with your wise, thoughtful and well researched advise and support. And I know we all miss you when you're not around.

I hope you start to feel better real soon, so we can have the pleasure of your company again.

A gentle and appreciative hug coming your way.

Much love.

Taurus xx

[Lost_Girl]

Dear Ava,

Taurus said it all beautifully. I shall just leave an extra hug here for you xx

[Wednesday]

Dearest Taurus and Carol,

It's been a nutty time, my brain gave up and wandered away for a while until I stopped feeling so sorry for myself and now it has reluctantly returned. I am even considering trying a psych again, no don't hold your breathe... anyway to catchup...

Surprise, the latest meds are a problem, they are not working so well and I am having some more extreme side effects. However recently a new med was added to the PBS list that I can try. It's a tricky decision to give a med up to try a new one, firstly because at this level once you say no you cant get it back again and secondly because the new one PBS one may not work at all, so maybe a little is better than none at all?

I have found out some more info on the links between genes and susceptibility and I am highly susceptible to a number of things, which make sense. I will alter my diet the best I can to suit. The current medical research is amazing I do know of an expensive, integrated medicine doctor that I hope to follow through with. My GP was not across the most current research and a little taken back by my requests for then testing, which she authorised but then said she couldn't help me.

The P family stuff is its usual nightmare.

Thank you for your kindness, love and hugs to you both. xxx

[Clues_Of_Blue]

Hey there Ava, glad to see you around, though not so glad to see you're still having a rotten time of it. It must be tough having to make decisions like that about your medications, and I can only imagine how frustrating it is to be better read on your condition than your doctor. I find even on simple stuff I have to know the answers already before I get any, they all seem to be about shoving the patient out the door almost before you're in it, these days. Sorry, not helping. Just wishing you some better luck with the medical system in general. Hope you get somewhere with the integrated medicine doctor.

I'm extremely tired from work so not entirely coherent right now, but just wanted to stop in and let you know I haven't forgotten about you, and am here with some mellow jazz. Not the kind for dancing really, just for relaxing with and soaking up the atmosphere. I'm thinking The Fragrance of Dark Coffee, by Godot. I suspect we could both do with it.

Blue.