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]

Hey T & Wednesday,

That is the moronic, cruel part of having a very physical type of PTSD, is that even if you get sick the compulsion to sprint cannot be snuffled easily.

I suppose that is why so many people who have been violently sexually assaulted in childhood may get a diagnosis of Bipolar II. The adrenalin rush or 'high' is not a 'high' so much, but quite literally an energetic re-enactment of what you could not do at the time. I didn't want to exercise that much this week, I am so weak, I'm anaemic again, but sometimes I am given no choice.

There is another PTSD sufferer on here, Mark, that has posted about his running when he was acute. I had to smile at some of the posts where he said he was purging at the end, collapsed on the lawn, we are so mad, I know I get a mad look on my face when I run.

Mind you the heat makes it so much harder so I may have to swap to swimming. I couldn't finish my circuit the other night.

Don't spend your own time on Jose Wednesday, put time into yourself. My big sis has it too. She couldn't go to work the weakness was so unreal she just lay on the lounge staring at the ceiling and we are both not lay on the lounge kind of people. Very frustrating.

Enjoy Sunday meditation guys or whatever one does when we are feeling lousy or so buggered that we are marooned like a lizard.

[Wednesday]

Hello dear Taurus,

Last nights dancing sounds fabulous. Though I would have thought you would be exhausted by your visitors?

It was a bad day and finished with an angry call from someone that I love dearly. I was devastated and sobbed. They are angry that I am not well and bless their cotton socks keep finding things for me to try. But I've done so much of all the things they recommend. This disease is not going to be cured by swimming in the sea, tumeric and kale. I don't discuss much with them because I don't want to make a big deal out of the disease, give it my limited energy and waste precious time. I also don't want to have another pseudo doctor on the case. They are angry that I have the infusion, which are basically poisoning my body. I get it.

Today is better, what I would do without the AD's is far to scary a thought.

Hugs, xx

[Wednesday]

Hi Corn,

Thanks for explaining the Bipolar 2 run, interesting. When I have a panic attack, among other symptoms I move and talk like fury (can't run). I can now see why I behave the way I do, good to know.

You and your sister must feel absolutely dreadful. It is horrid to feel so fatigued that you can't move and no doubt you are both very hungry. And you have anaemia fantastic! Can you get an iron injection to help out?

Thinking of you, hugs, xx

[Cornstarch]

Hi Wednesday,

I hate it when people preach to you and tell you to 'just' exercise, 'just' eat better, 'just' try this, try that and you're mental health condition will miraculously disappear.

What is sooooo irritating when they do that is that the subtext is;

"you're just not trying hard enough sweet chops".

Please. Who in their right mind would sign up for this and all the stigma that comes with it willingly! I'll just feign some of the most socially excluding illnesses to be annoying. I laughed when you mentioned turmeric because I do take Corny's Fire Ball every morning. I throw that baby back with gusto. It's organic turmeric powder with pepper, finished off with a little coconut oil. Don't try it, it tastes terrible, but it really truly does help with ghastly period pain from endo.

I hope your procedure gives you reprieve.

I hate panic attacks too. I started having them at roughly the age pf 25. You NEVER forget your first one. I'v been on the anxiety spectrum my whole life and it just kept going up and up and up and up. My anxiety is terrible today. A women from my past that really hurt me materialised after I firmly told her to leave me the hell alone, never contact me ever again. When I have so much going on with Mum and my own health I forget there's emotions I have not had a chance to process. All I can do is keep my head above water. Everything catches up with us in the end doesn't it.

Oh well what's another anxious day.

I hope P is being P, P, P, Perfect!

[Lost_Girl]

Dear Ava,

I am always logging on and reading your thread even when I don't post. Sometimes I just don't know what to say. There are lots of things I would wish for you if only I could make them happen.

I shall happily join you in a whiskey. I love Suits! Did you know that the girl who plays Rachel is dating Prince Harry?!

I can't recall if you have access to Stan but my new favourite is called "Being Erica". She hit rock bottom and was approached by a therapist who claimed to be the only help she would need (not to mention he can bend space and time). She gets the opportunity to go back to revisit past regrets. It's light hearted but with meaningful outcomes. I think you'd like it.

I hope it all goes well tomorrow.

Cornstarch, I really feel for you with the exercise. I need to get some as well but every day there's something holding me back whether it is depression or physical either way just as hard. If only it were as easy as wanting to do it. Hang in there.

[Clues_Of_Blue]

Hey there Ava,

Sorry to hear you had such a hurtful phone call. It's a wonder you get these "pseudo doctors" at you all the time, you show constantly that you are very well educated about your health and anything at all that could help. It's an unfortunate example of people worrying and saying things that make them feel better, and it has nothing to do with you. I tend to tune that stuff out, or picture myself crash tackling the person suggesting things. It really turns the conversation around when you start gleefully chuckling at them. 😉

Sorry also you don't feel you've had time to do things for yourself... Though it sounds like you checked out the electro swing and enjoyed it... Wouldn't you say that was a little something for you? It's very much the little things that make life worth living, even if it's a bit of music, enjoying a particular food or drink, or wearing your favourite ear-rings whether or not you're going out to show them off. I'm up for that Moet whenever you are, by the way. (Taurus, do you have a ball gown with that ballroom dance background? I think we should dress up for our next dance... And you've inspired me with the mention of Latin dance, I feel like shaking it to some Latin beats.)

Ava, I'd like to send Sir Pecksalot with you when you go for your tests, if you want the company (don't wear your best top, though, he's a bit leaky). He sings so beautifully, and shakes it up with a playful "SKRAARK!" now and then to see if you're paying attention. He's bound to keep your mind off the tests, and a smile on your face. 🙂

Blue.

[Wednesday]

Hi Carol,

Good to hear from you, thank you for your kind words.

Hugs, xx

[Wednesday]

Hi Blue,

You're right I should live more in the moment, thanks for the reminder. I did enjoy the electro swing. This stupid depression does my head in (haha)!

Thanks for Sir Pecksalot, he was very attentive through the tests. I managed to then fall down the stairs (gee) and ended back up in the ED. Do you think that I have some deep psychological need to be there, Ill google and see. Why do I like being in the ED, umm. I'm okay just meds and rest, the usual. I need to reassure you that SirP managed did not get hurt in the drama and seemed to quite enjoy the activity and noise, though he did keep quiet and sat on my back to blend in. At least I now know what a code blue means :).

How are you and the lovely man going?

Hugs, xx

[Guest_9809]

Morning Ava, I just noticed you on line and thought I'd jump in quickly to say hello. I havent visited you in a few days, for which I feel bad. )-:

Yes the dancing the other evening was lots of fun, and sorry you missed it. It was a welcome escape from the visitors!

Sorry to hear of the angry phonecall from a loved one. It always hurts more when anger or criticism comes from someone we love the most. No wonder you were upset. But no doubt this person loves you dearly, and is angry and upset about your situation. And you know how hard it is to sit back and see someone you love suffering. It is so frustrating, and makes us all feel so ineffectual. So if its any comfort to you, I know it would have been said in interest for your welfare.

Swimming in the dead sea and consuming loads of turmeric and kale - yeah all good natural remedies for some people for some complaints. Certainly not for all! If only it were so simple aye?

I know you keep well abreast of any new therapies etc that become available, and there are always new cures and treatments coming onto the market. Medical research is a huge industry. Something will come up. In the meantime ... your infusions is the best you can do. Yes it may be stuffing up your immune system, but so too does all the other big cures for things like cancer, ie radiation and chemo. But they are effective! Have faith.

The ol' ADs huh? Yes they certainly have their place. Keeps us on an almost even keel. At least I think they do, as I lurch off to the side momentarily. (-:

Hope you have a better day today.

TS and Tammie xx

[Guest_9809]

Oh no ... your latest post just came through about your fall down the stairs. I had just finished posting to you, and then boing along comes your post to Blue.

So sorry to hear that. Are you still in hospital now, or back home again? More meds? Nothing new there then. (-:

And gee I'm happy to hear that Sir Pecks was uninjured in the fall. I'll bet he was squarking in panic though.

Code Blue did you say? Doesnt that mean you went into cardiac arrest, ie an emergency situation? Dear me.

A big bearhug coming your way.

TS xx