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.

[Cornstarch]

Oh gosh Wednesday that is terrible.

There are some things in life that make 'words' feel ridiculous and insufficient, such as times like these.

Grief is a long, drawn out process and can start coming out side ways if you don't look after it.

It's no wonder you were having a little sad dance to music and drinking wine, I would too.

I hope the person that made an attempt is being cared for adequately, our mental health system is a jumbled mess, don't get me started.

Sounds like your health isn't great. Do you suffer form chronic pain?

[Wednesday]

Hello Sweetcorn,

You have such a wonderful way with words.

My (interstate) friend is in a really bad way, she is extremely smart and can out manoeuvre you. All the little traits she had years ago have intensified and became damaging. The hospital released her, but I worry about her. I call and she says I can't talk to you, love you and hangs up. I have contacted other friends she knows and they are doing their best, but she is making it very difficult and wearing people out. It is so hard to know exactly what help she is getting. I suspect she would refuse it or e difficult about it anyway. She asked if I could go and live with her to look after her. I can't that. Any suggestions are met with a no. She has one relative she is estranged from. I'll keep calling.

I guess I do have chronic pain, I don't really think about it, its my normal :). I have lots of medications to help out though. somedays it is quite literally baby steps other days are better. Maybe that is my grief coming out sideways!

Hugs, xx

[Wednesday]

Wonderful Blue, I'm glad Sir Peckalot enjoyed the pretty music.

Thanks Blue, we all have our moments and this is just one of them. It is sad, but having friends to drink wine with, (Bolinger in future) and dance with was a great antidote. I have a great list of music to pop on and to remember you and Taurus. Maybe we should try some line dancing and rap next, or maybe not....

My GP wasn't interested in my latest news form the US, but Im used to that. BUT, there is always a but.. the blood test I need to access the US meds is affected by my current meds. If I stop taking my current meds I am in big trouble. I'm working my way through this puzzle. First things first, I need to check if I have the related gene or it maybe a fizzes anyway.

I hope work is settling and you are having lots of lovely moments together, hopefully not including icky beer, (good grief woman what are you thinking life is way to short for bad drinks).

Hugs, xx

[Cornstarch]

Oh gosh Wednesday that is scary.

The absolutely horrible reality is that you can't monitor somebody 24/7. It is so awful. I mean she can't stay in hospital forever. You are doing amazing she is so lucky to have you as a pal.

Sounds like you are on the pain med rollercoaster. I'm sorry that's awful. My little sis did a marathon and ever since then she has had nerve pain in her hip that drives her absolutely mental. Can fix it! Have you heard of giardia? I have one of it's evil cousins, dropped weight suddenly, and I am starving because he (I call him Jose) is eating me! I am so hungry and I can't get rid of him! People who were raised in chronically stressful conditions have lousy immunity so when we get these things we crash. I'm trying to starve him and have resorted to no carbs because they feed off them which is pure hell. I don't know how people with eating disorders do this. I can't survive without rice every single day.

I AM SO HUNGRY RIGHT NOW I COULD EAT A WHOLE CHICKEN.

LOW BLOOD SUGAR MAKES US ALL MAD, I'M FEELING MADDER THAN USUAL

xx

[Wednesday]

Hi Sweetcorn,

I think my friend has burnt to many people now. I hope that the mental health people are paying attention, I cant get an answer from them. She may need to crash. She is very frightened of death, which in this case is a good thing.

How very rude of Jose to come uninvited and eat you! Is there nothing else you can do than starve yourself? This can't be right there has to be another way to kick Jose out? What is the name of the bug, I can ask around if some of the lovely nerds around me know of anything that could help? Is there anything you can eat? I guess you have diagnosis are there any meds?

Hugs, xx

[Cornstarch]

Oh no Wednesday that's not good when someone gets to that point.

You referred to my gallows humour, well after all these years, I'm pretty straight down the line with mental health as well. Just say it like it is. Just because my Mum suffers from schizophrenia does not mean that I cannot see how it is perceived, and how their behaviour is not socially acceptable at times. Often, people with schizophrenia burn bridges too. Very common. It means that there is/was a hell of a lot of pressure placed on us to be her everything, hence my breakdown.

Jose was a gift I received once I finally fell in a heap after holding up Mum and losing all sense of who I was. His name is Blastocystis. My friend had giardia and lost 35 kilos, I really don't want to do that. But the awful thing is that they feed of carbs and sugars and all you can do is try and starve him. Tried antibiotics and it didn't work. My sis has it too. It's so cruel because with PTSD I have to exercise but this bug zaps the energy out of me. The muscle weakness is unreal and he's made me anaemic again.

So what wine and song is on tonight? I am stuffed. I reckon I would have run/walked 60kms this week. I cannot move.

[Clues_Of_Blue]

Okie doke Ava, Bolinger it is (I promise I won't bring beer, haha). I'm not so sure about the rap and line dancing... My thought is electro swing, how does that sound? Just for something different (if you YouTube "Electro Swing Collection", that's what I'm listening to. Join in the fun, Taurus, Cornstarch (you don't have to dance if you've been on the go so much, but you may not be able to help yourself), and anyone else stopping in.

It's good to see how well informed you stay about any developments in possible treatment. I won't advise you, I'll just hope your vigilance pays off.

Have you been able to take a time out and do anything you enjoy around all the tests and meds and everyone's dramas? It all sounds very exhausting. I'll keep the wine flowing and the turntable spinning whenever you need. 🙂

Blue.

[Guest_9809]

Sounds like a good idea Blue. I would be very happy to join in with the dancing. I used to do a lot of ballroom and latin dancing, so elecro swing cant be too much different to that can it?

Hi there Ava, I hope you're doing alright? Are you up to dancing tonight? I'm looking forward to it actually.

Hi there Cornstarch, is this dancing enough exercise for you to be of some assistance?

TS

[Wednesday]

Hello dear Sweetcorn,

WE are all a bit mad arn't we, which is why we understand each other and the blessing of this site.

I am seeing a friend tomorrow that may have some thoughts about Jose my instinct is that she will talk about the GUT diet to clean Jose out and put you bak on track with your system too. You can do an internet search for some info. I just found DrAxe.com who has the leaky gut diet treatment plan, it has the basics. there is so much more info. I'll get bak to you when I know more.

Sorry I wasn't around last night to play. Playing on my computer is frowned upon when P is home.

Hugs, xx

[Wednesday]

Hello lovely Blue,

I love the electro swing, I'm bopping along here to the music. Sorry I was busy sobbing not my pillow last night, but feel better to day. This music would have cheered me up no end. I think since this is all virtual we should work our way through all the most expensive french champagnes. Maybe some Moet or should we go for some 18 year old Macallam whisky (they drink it on Suits)?

I have three doctors appointments/tests this week, ugh. I'm quite phobic about hospitals so I will be mindful and not have a panic attack.... Hope they can find a vein that is happy to cooperate!

Lovely of you to ask about me doing something for me. There isn't really time, I am still getting my head around the lost baby and the other stuff. Then I need to rest :).

The test tomorrow is for a new possibility and through a functional med doctor, my GP is not overly delighted. I have to try to see if it helps. The tests are complex and take ages to get back.

Thank you for your support.

Hugs, xx