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.

[Guest_9809]

Hello dear Ava. Well its been almost three weeks since we last heard from you. I often think of you, but dont like to constantly bug you by posting. And I dont want you to feel obliged to respond.

However, I know you were due to have an operation sometime in July. Not knowing just when in July that was to be, I wanted to get in early to wish you all the very best for the upcoming operation. I trust it all goes really well, and that it gives you back some mobility and independence.

I trust that the Curly One is looking after you, even if P isnt. We all care about you very much Ava, and I've missed you these past few weeks.

I hope you will get back to us at some point to let us know how you are getting along. Looking forward to that.

Kindest regards, and a gentle hug.

Taurus xx

[Croix]

Dear Ava (plus curly dog)

You have been rather quiet for a while now, I hope you are managing -and of course in such a social whirl you are too pressed to post:)

Croix

[blondguy]

Hey Ava

I too hope that you are doing reasonably okay

My Best. Paul

[Emmy.]

Leaving some hugs here for you Ava xx

[Guest_9809]

Hi Ava, its some time since I last posted here to you. And even longer since you've posted!

I hope you are receiving all your messages, and know how much we all care for you here.

Perhaps you've already had the operation which was planned for this month? I trust it went well and will make things easier for you.

Sending you healing thoughts and prayors.

Taurus xx

[Wednesday]

Hello dear ones,

You are all just so lovely, I don't know how to thank you, especially when In know you are dealing with your own issues. Thank you for being the amazing, thoughtful lovely people you are.

I haven't had what it takes to post for a while. I'm okay but I just can't get well. No immune system means I get every bug going, which is makes me pretty tired and little despondent. My op seems to have gone okay but I wont know for a while. The damage was a bit worse than my surgeon expected but he did his best. Fingers crossed I can walk a bit better soon.

Other medical tests have continued to come up with disappointing news. So I've stopped having any more tests.

I find P's family stuff hard. I wonder if I am just paranoid.

I'm trying to figure out the use of getting even more antibiotics and I can be bothered making the trip to the GP. maybe after a nap I'll work it out.

Oodles of hugs and love to you very dear wonderful people. I so hope your struggles are making sense and causing you less issues. Please be very kind to yourselves. xx

[Croix]

Dear Ava~

Well I'm very pleased to hear from you, even if life is taxing. I'm also wondering of course about curly dog, who was in disfavor for scratching the back door if I remember rightly. Perhaps a stringent diet of chicken, mince and bacon with the odd deluxe biscuit would be in order?

You know perfectly well just because you are unwell your judgment does not suddenly get faulty. There is no way you are paranoid, that family has been a source of grief - to P too on occasions - all along. So see them (and you) as things really are.

On the menagerie front Sumo Cat has taken over my 28 year old's comfy recliner chair and is not really disposed to share. They do, after a fashion with my wife perched on the edge and SC relaxing with the lion's share.

Talking of Lion, if you get the chance watch the movie - if you haven't already. It's quite OK on DVD, very sentimental with a mostly happy ending. Quite by chance I was left a box of virtual Kleenex™ by Dottie123, and will send you a handful if necessary 🙂

Enjoy your nap

Croix

[Clues_Of_Blue]

Hello Ava,

Just a quick note to let you know I'm glad to see you. Sorry to hear you're still struggling so much with your health. I'm inclined to agree with Croix, in regard to P and his family, it isn't paranoia to be stressed by a toxic situation.

I do hope you get some positive results from the operation. Sounds like the whole business was pretty exhausting, you deserve to come away with some improved mobility.

To quickly impart my own news, I'm all moved into the new house, now. A hell of a job doing it around work, but it's done. Now I just need to be able to stay in the house for five seconds, to enjoy it! It's much more quiet and peaceful than the old place, that's for sure.

Hope you got that nap. I could go one, myself. Thinking of you.

Blue.

[Guest_9809]

Hi Ava, its always such a pleasure hearing from you. My apologies for not dropping by for a while. Its not that I havent been thinking of you, because I have. I just dont want you to feel you have to reply all the time. Plus I've been pretty busy and preoccupied these past few weeks as well. But thats another story, which is still evolving.

So ... how are you? Its some weeks now since your operation. Hopefully by now you are noticing some improvement in your mobility and pain levels. Yes that blasted immune system of yours! It makes for a slow and difficult recovery process doesnt it?

As for P's family stuff, I dont think you are paranoid at all. I just think they are a complicated bunch with 'issues' beyond your reach. It really is a sad situation, for them as well as you. They, especially the kids, are missing out on such a lot by not permitting you into their lives. I know its hard, because you dont have the energy to do anything about it right now. So it is my wish that you are can somehow 'let it go' for now, and concentrate on yourself for a change.

Have you seen much of your daughter and 'blood' grandson lately? Perhaps another chance to play with all those 'macho' toy trucks and things of his will have given you a boost.

Okay, just a short one today. Please dont feel under pressure to respond. But do want you to know that your wise, witty and caring presence is missed by us all. Hoping you'll be back with us again soon. In the meantime, sending you lots of get well wishes and love.

A gentle hug to you and a treat for the curly one. Tammie also says hi. She is basking in her own grandeur here since she proudly caught herself a rabbit dinner twice over the past few days.

Thinking of you with much affection and gratitude.

Taurus xx

[Cornstarch]

Hey Wednesday I haven't dropped in, in ages but hope that you are well. I looks like your health problems have only escalated and that they are becoming tiresome for you. I think managing any chronic condition if it lasts long enough can make you feel fed up and exhausted and just over it. I've only had full blown PTSD for 7 years and then I think of my Mum who has had schizophrenia for literally 50 something years and she doesn't have any insight into her illness but she told me she is fed up. Can you blame her.

I'm not up to date with your family situation but clearly when it comes to your husband you are not seen.

This can bring up old feelings of not being seen and only make you more depressed and irritable. i completely get it and understand, I wish he was more attuned to you. But the ability to attune takes lots of elements. He may be missing one or two or five or six of those and may lack the capacity or be so entrenched in his ways and patterns that it will never change. Very frustrating and lonely for you.

I am sending you white light of healing from one lousy immune system to another

Big bear hugs, I am wrapping my arms around you and squeezing. I think I wrote bugs on Sara's post, I'm a little tired.

xxxxx