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.

[Emmy.]

Dear Ava,

I'm so sorry to read about your dog being mauled - that must have been such a horrific experience for you. How's your dogs throat doing now?? Lots of soft gentle pats for him.

You mentioned that you've started seeing a psychologist- that's really good to read. Hope they've been helpful in talking about P with them. will you discuss with your GP about your AD's.

Hope you're doing ok Hun. You're in my thoughts. Lots of love, Em xx

[Wednesday]

Dearest Emmy,

It is so lovely to have you back, lots and lots of hugs!

The psych has been good she told me to stop fading out, I hadn't realised it had gotten so bad, oops. She also said my AD's aren't working and I have to go and see a psychiatrist for a medicine review. She thinks that the range of meds I take are counteracting the anti depressants, they are pretty serious medications and it made sense. Jut need to make an appointment... okay I'm working on that one.

The little curly one is doing really very well and all but forgotten his horrid experience. He is a little more timid than he used to be around dogs that look like a husky's and interestingly some people. Maybe that's a good thing but he still has a fan club to charm. The ladies in the chemist adore him, after the incident one of them got down on her hands and knees to tell him how proud she was of him, very cute.

I can't deal with much at the moment so a lot of things are not getting spoken about. I think I just need help to accept my illness and learn to live with it.

Lots of love Emmy.

Hugs, xx

[Croix]

Dear Wednesday~

Looks like tablet roulette time again - sigh. Next lot will be better - hows that for a positive thought?

I'm very pleased about the little curly dog, the Zeppelin dog was attacked once, but had a wide leather collar on and it did no harm - makes her a little more inclined to bark first at other dogs when we go for a walk, but pretty happy all-told. Actually I think it is an excuse - she just likes barking, it has great entertainment value apparently.

I popped a post in about cats in my youth in the happy memories thread. I'm starting to find it can be relaxing to bathe myself in times from my youth, words just seem to ooze out.

How is the grandchild with the imaginary shoulder-animal?

Have a hug

Croix

[Emmy.]

By fading out does your psychologist mean that you're not putting yourself first? It's hard not to fade away sometimes isn't it. Hard to think that we matter. But we do, you do! To get through this we need to be a bit self centred and selfish, think only of ourselves but I promise you, it'll be for the best. My psychiatrist has been a god send. Please do try to book that appointment. I'll be here for you every step of the way Hun. Take it slow. You don't need to talk about everything at once. I found that some advice that Carol gave me really helped. Make a list before you go of all the things you'd like to talk about at that session then go from there.

My psychiatrist told me that any thoughts that came up between appointments I was not to dwell on, I'm not a professional to analyse these thoughts and to work out the meaning so to always have a note book nearby to write them down. And then that was it, I couldn't think about them again until my next appointment with him. Sounds a little silly when I read it back but it really worked. I took his advice and went with it.

How interesting that the little curly one has become timid around some people too. Are these people loud or overbearing? Dogs are amazing aren't they! How sweet of the lady at the chemist.

You said that you can't deal with much at the moment - that's ok. Focus on self care, your health and perhaps booking that appointment. Keep it simple for a while.

You'll get there Hun. And I'm here for you.

Big big big hugs Ava. Xx

[Guest_9809]

Hi Wednesday. Sorry I've been absent for some time, looking back I see its been about 11 days. Time flies. But I have taken some time out this past week to try to get myself in a bet better state than I was. I think I'm getting there.

Anyway back to you. So pleased to hear that the 'curly fellow' is doing so well after his ordeal. And it sounds as though he has quite the cheer squad. Well deserved I'm sure. And you know you have your very own cheer squad here too. Lots of us here care a great deal about you and only want for you the very best.

Hey Emmy, I ran into you on another couple of threads earlier today as well. Looks like you are catching up with some old friends? Great to see you spreading sound advice and goodwill wherever you go. I love your advise here to Wednesday to focus on her self care first. And I agree with you that Wednesday really cant go wrong by booking that appointment with the psych. (-:

Good will and hugs to you both. And a cuddle for Poochie and Happy.

Taurus xx

[Guest_9809]

Hi there Ava. I just wanted to mention something that I read from you elsewhere a couple of days ago I think it was. I dont know, I was away for a week and had a lot of catching up to do.

Anyway you mentioned that a recent blood test appeared to indicate that you had CIRS. Which as far as I know is Chronic Inflamatory Response Syndrome. Is that correct? My understanding is that it is generally caused from exposure to mold.

If this is the case, what do they do to treat it? And I suppose with you having CIRS, it would have been interfering with any treatment that you may be having for your other illnesses as well. What a pain ... literally!

Well I hope they are doing something about it Ava, and that soon they can get things under some sort of control.

Out of interest, have you booked that appointment with your psychiatrist for a medication review yet? Tut tut, now dont keep putting it off! Rousing purely because I care Ava.

Hugs for you and a cuddle for the little curly fellow. And a cautious handshake and snuggle from Tammie.

Taurus xx

[Wednesday]

Hello dear Croix,

Ah yes the positive thought! The problem is that this has been going on for years and I am getting sicker. But there is always a bit of me that thinks it will work. This time I go back to self injecting instead of infusions so no day trips to the hospital, woo hoo!

Ah my lovely grandson he is, well adorable. I haven't been able to chat to him for a couple of weeks with one thing and another but will next week. When last we spoke all of his imaginary friends had returned to their homes, trees rocks, parents etc. Lucky, when you include the red stop and green go lights his home was getting a tad crowded!

I hope you are okay and the PTSD and sleep are easier.

Hugs, x

[Wednesday]

Ferest Emmy,

I am so very pleased to read of your success. It is just brilliant that you have such a good relationship with your Psych. (I'm so proud of you I'm grinning).

By fading out I tend to disassociate, it is really quite nice in a funny way. It easier to be a ghost with no substance wondering through life than having tottery to cope some days. Then again it isn't useful and doesn't really help matters. I thought I was over the habit but I things just got too much to manage.

Your advice is great I shall work on putting myself first!

Big hugs back to you, you clever woman

[Wednesday]

Lovely Taurus,

Thank you for your caring posts and reminding me that I am not alone. Err no I haven't booked an appointment with the psych, I can't even remember where I put the referral..... I do seem to have a bit of block. I had a bad experience with a Psych many years ago who suggested we become more intimate. We didn't but it shook me up and still has lingering effect. I know its silly and he is only one of many with the majority being wonderful... but you know how these things run. I think maybe the combination of steroid meds and AD's could be the problem, maybe I can manage that better? My doctor says steroids play with your brain!

Thanks for asking about the CIRS. As the gene and blood tests come back they are all pointing in the same direction. It would certainly help explain a lot of things.

It is about biotoxins, mould being a cause. Most people can get rid of biotoxins but in my body it seems they just build up and up. I'm thinking that if I can clear up the CIRS I might have a better show with the PA and other auto immune stuff. It makes sense in my head at least. It is still relatively new research so I need to be sensible and not get too excited.

The fix, I'm not sure about I see this doctor in a couple of weeks. She has me taking a range of supplements as a band aid type fix, they do seem to help my mood.

I know the first step is to clear up and mould. Not that my house looks mouldy (I'm always cleaning something to try to keep my allergies at bay) and therein lies the problem. I have had problems with a leaky roof, taps etc and therefore probably have some residue mould. Apparently dead mould is more toxic than live mould and my normal go to would have been bleach is a mistake. Once hit by the bleach the mould just sends its spores in to the air. Of course there have been a lot of houses, shared accomodation and office buildings with hidden mould in this woman's life time.

[Wednesday]

...

Sorry about the boring story. I have a dear friend who many years ago was diagnosed with sick building syndrome and now is incredibly ill, unable to go out of her house and clearly her brain has been damaged too. I think that she probably has CIRS but is unlikely to listen because she believes in her doctors multiple diagnosis that require horrid meds (I take them too) and all of which also fit under the CIRS banner.To change the subject, I haven't been doing much training with the curly one but every now and then he runs through his range of tricks. Any trick will do just in case it works dancing, rolling over dropping, standing, sitting, crawling, getting his toy anything that just might work. He does this on the floor under the book case that holds his treat jar and looks up at me most expectantly. He gets the treat!Ahh, nap time.Love and hugs to you and Tammie.