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 Carol,

Goodness I am wishing you lots of luck, school holidays, agh. I have no doubt that you are the most awesome of mums an they will have a ball. Do remember to take some me time time and give your self a lot of love too!

The op sounds annoying, but will hopefully make breathing a lot easier! From what Croix has said it may be really useful.

Love and hugs, xx

Hi Croix, S&Z. xxx

[Guest_9809]

Hello Ava. As always, its good to hear from you. However, you didnt say how you were doing personally. So typical of you, always thinking of others, but neglecting your own needs.

So ... how are you doing?

Taurus xx

[Wednesday]

Hello dear and very special Taurus,

Thank you for asking, I need the direct question because I just don’t think to say. I feel so bad dumping all the time when so many here that have so many problems. I’m pretty fed up and extremely tired. I can’t cope with the amount of medical information coming at me. It has become harder and harder. I find it very painful just wandering around the house and rarely. I still drive but find that I am becoming more reluctant to. I don't always trust myself. I hate being reliant on others. It would be nice togo to a shopping centre, walk around, have a coffee and come home when I am ready. I know that is ungrateful of me. I think I need to get to real and realise that I am not going to get well. I also think I have said that before.

I messed up my latest meds and injected a bigger dose than I was supposed to, which means I will run our before I should, mutter, mutter. They are one of the special Government scripts, so I’m not expecting to be able to get any replacement meds. The new meds help a bit, yes I have said that before too. Maybe these will last longer. I need them to not necessarily stop pain but reduce damage.

Too many doctors to many tests too many opinions and diagnosis's, too many medicines, too many supplements, too many questions left unanswered. I’ve arranged a doctor’s appointment for the end of the week and will get to hear what the psychiatrist (that I won’t go back to) had to say about me.

I’m trying to do stuff any stuff to keep busy and prove that I am still viable somehow. I’m so sorry for not being useful on this site, I can hardly look at any other posts at the moment.

I hope dearest that you are managing yourself, are you?

Hugs, xx

[Guest_9809]

Hello again Ava. Firstly apologies for not getting back to you sooner. I have been going through my own difficulties recently, but hopefully things are on the improve again now.

Well .......... thankyou for your honesty! Sometimes its easier to ignore the really important things, the things that are worrying us the most, or the things that hurt us the most, than it is to face them. So I appreciate you telling us how things really are.

I am so terribly sorry that things are as bad for you as they are. Life is just so very unfair, and usually to the best people in this world. Why is that do you think? I wish I knew. And I wish I knew how to make you well again.

But alas, all I can do is to sympathise and to say I am here to support you if and when I can.

Meanwhile I think it is important to continue to do those little things in life that you enjoy and can still do. Spend time with, or talking to, your children and your little grandson. Keep Happy, the little curly one, by your side. I know how much comfort our little doggies can be.

As for not being useful on BB. Forget it! You dont have to be useful, its here to support you as well you know. You have already supported many of us over the past year or more, in more ways than you can ever know. But it isnt just a one way street, you need to allow us to be there for you too. Okay so right now you are not in a great place, so stick to just your own thread for a while. Thats fine, let us come to you, you dont have to venture any further.

Its also very difficult adjusting to becoming semi-reliant on others for things we have always been so able to do ourselves. Especially for such an independant and competent woman as yourself. Loss of independence is a very difficult transition for anyone. Unfortunately for you, your illnesses are bringing forward the need to start to rely on others for a bit of help occasionally. Perhaps you have some volunteer organisations in your local area who assist people with transport etc? This would cover getting you to appointments, getting to the shops for everyday shopping or the chance for a relaxing coffee in a cafe or a nice lunch in the sun. And not have the added stress of having to drive yourself. Perhaps it is worth bringing the subject up with your GP, as he may know of local organisations who do this, and be able to put something in place.

Sorry I can do nothing other than to say I care - very much. Love and hugs to you dear lady.

T xx

[Croix]

Dear Wednesday~

You really don't have to do anything you know, Taurus made a very wise point - you need to allow us to be there for you too - we need it too, to be able to support, to be of worth in out turn too. If I remember I've already nagged you about that:)

So give the curly dog a pat please, plus whatever treat is currently in favor.

What sort of stuff are you doing to keep busy? Maybe as Taurus says you can get 'chauffeured' to an indulgent folly.

If you get the chance and have the concentration have a look at the Happy Memories thread. It has long ones and short ones there, all interesting, all something very special to someone.

The usual menagerie send a piercing woof, a hiss (Nasty Cat has absolutely no manners) and a grave nod.

Croix

[Wednesday]

Dearest Taurus,

You are so very sweet and do so much by being there, so thank you.

I saw my doctor but she didn't have the psych report or any of the hospital reports. Apparently public hospitals are extremely slow in sending out their snail mail. So nothing to report. I'm on a couple of waiting lists for operations but that will be ages away so I wont bother going into details.

Think I have got to a point where I am a chronic illness paitient so everything that happens (symptoms) to me is normal. I don't know if its just an odd place to be in where my stuff is now normal rather than a condition. I suspect that if others saw a doctor with say no cartilage and bone grinding on bone issues the treatment would be quite different. As my doctor said the other day I am just weird with my array of autoimmune conditions.

I probably made it all sound worse than it is. I have good and bad days. This just wasn't my plan and I guess I resent it. Okay I should just get over myself and count my blessings, such as having you and Croix around. Thank you. Hugs, xx

[Wednesday]

Thank you dearest Croix,

How lucky I am to have you around. I wont repeat my note to Taurus. I so appreciate all your support.

To keep busy I am knitting very small jumpers, very slowly. The curly dog love a game of hide the toy and learning new tricks, which is fun. I've also tried reading (not so good at finishing books) and a little writing and I'm sad to say watch way to much TV ;(

Curly dog send his regards and wonders if you have any bees around, which are his current favourite treat! I really do think you are being a little hard on Sumo cat, I find him to be just delightful. Pats for Sumo and Zeppelin, oh and what about some tasty fish skin for a treat?

Hugs, xx

[Croix]

Dear Wednesday~

My wife (the one of a mere 28 years) came home today tired and frazzled. She plonked down in chair on her side of the kitchen table. As soon as she sat down Sumo cat jumped on the table, spread his enormous set of whiskers wide, tilted his head on one side and very gently touched my wife's face with his nose.

Fatigue and frazzle faded away.

C

[Croix]

P.S. Yes I know you might be forgiven for thinking it a trifle improbable that anyone might remain 28 years of age for a period in excess of 20 years, but I'm assured this is the case.
-C

[Lost_Girl]

What a lovely moment to share Croix! I love that your wife is forever 28. Thanks for letting me know about your op too. I am very hopeful.

Dear Ava,

Yes, let us be here for you too. We want to. We care. I am sorry to hear about how they treat you know given the chronic illness patient status. It does seem wrong to me. It must be so hard managing the drugs and your symptoms. I know feeling trapped at home is not easy. I like Taurus's idea of looking into transport so you can have time out, I think that is important for the soul. Would P takd you out on weekends?

I think your hobbies are splendid. Nothing wrong with tv 🙂 What are you watching at the moment?

Gentle hugs xx