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.

[Clues_Of_Blue]

Hi Ava,

Bug seems to like me a lot, it's moved in to stay. Sigh. It's no worse though, so still getting things done.

You're right in some cases, often people with chronic illnesses rise up. Sometimes they just give up and I think give themselves much less of a life than they could have, and that's really sad. That said, your comment about the guy with one arm and one leg made me think: no matter what we have to deal with, there's always someone who seems to be worse off. But we do all have our cross to bear, as the saying goes. Comparing can give us some perspective, but someone having a worse problem in no way makes our own insignificant or not worth being concerned with. You have every right to feel whatever you feel in regards to your own situation, whatever the next guy has to deal with. Just my perspective on it.

Yes, love is great. Looks aren't entirely irrelevant to romantic love, but personality has a lot to do with how someone looks, and how we perceive them (I had to laugh about your comment re Trump and co: uggos for a reason). That said, great big surgery scars and all, my other half is downright gorgeous. 😉

We did have a lovely week-end, thanks. A bit social, and very, very nerdy. 🙂 How did yours go? Did you do something fun or relaxing together? I do hope so. You said P is looking frazzled, I hope it wasn't something too bad, if he spoke about it.

Blue.

[Wednesday]

Hi Blue,

I hope your tricky monster bug is starting to get the hint to move on!

I can see you fitting in extremely well at a nerdy do and there being much laughter! We went out for coffee but I had to head home to get out of the pollen laden winds. Not that I want to have an 'ism' on the subject but sounding like Darth Vader just isn't fun. Asthma plus lung virus makes breathing a problem at times, hopefully whatever the virus is will sort its self out and leave!

Yes, P is getting frazzled. Some of it is about work, some of it is about family stuff. P is a lovely man in his way but will not stand up to his adult children and they are not my biggest fans. It is a big problem and I have no way of fixing it. P just wants things to go along the way they are. I'm too exhausted and ill to do anything. I've tried discussing, but that generally goes awry. He will worry about it and sometimes comes up with a solution. But that generally means I stay home while he visits his family, it is not a solution. I asked him last night who his family included. It doesn't appear to include me. Sorry it is a long and boring story.

More napping required. zzz

Hugs, x

[Clues_Of_Blue]

Evening Ava,

This bug is completely clueless about hints. And I ain't in the least bit subtle! With the weather chopping and changing I have the joy of hayfever and asthma, too, so I've got the wheezy nerd stereotype down perfectly. Sounding like Darth Vader is possibly the least of our worries (he does sound pretty cool). With any luck, your bug is better with hints than mine.

On a side note, yes there was much laughter to be had, among the nerdy antics. A good time was had by all. Beyond nerdy pursuits, as you may have guessed from my profile picture, I have been amusing myself with arty things. I seem to recall you being an art lover. Do you get to do anything creative to make life a bit more enjoyable? Apologies if you've mentioned it before, I don't have the best memory.

The situation with P's kids doesn't sound good. Do you know what their beef is with you, and why he won't support you? Is it just a conflict avoidance thing? That seems to be a very, very common thing and it really is bloody impractical. I firmly believe that the best way to give yourself a big, horrible conflict to deal with is to avoid it like the plague when it's little until it grows out of control. Maybe he needs a reminder of that? I'm sorry you're being put on the backburner with him like that even inasmuch as discussing the matter. It's not good enough. Here to listen if you need it.

Blue.

[Lost_Girl]

Hi Ava,

Forgive me if I have asked this before, but have you seen the Sloth scene from Zootopia? If not, check it out. I think of it when I am having a groggy day.

I have been thinking of you and hope you are breathing easier. My asthma is playing up with the wind and pollen but mine is managed easily at the moment.

Love Carol xx

[Lost_Girl]

Dear Ava,

I just wanted to let you know I am thinking of you. I hope you are continuing to improve each day but please remember we are here for you in case you are not.

Gentle hugs, Carol

[Wednesday]

Hi Blue,

No the bloody bug is impervious to hints insults and medication, gee!

I love your pictures, you’re very clever! I haven’t been out much. I like art and the stories behind the art but I’m not particular good at arty stuff. I pulled out some old photos recently and plan on framing a few, does that count as arty? My garden has always been very important to me but I can’t do much at the moment, tomorrow or the day after maybe…

I think in P's family there is a lot of conflict avoidance, which results in passive aggression. You’re right it is really bloody impractical.

You are so smart I loved this phrase:

I firmly believe that the best way to give yourself a big, horrible conflict to deal with is to avoid it like the plague when it's little until it grows out of control.

P will see his family this weekend and maybe they will talk. I think I am over it. I’ve nothing left and it has gone on so long now that I don’t think anyone can go back. The words in their emails and their actions still hurt. There is nothing I can say to them that won’t be misconstrued, it's just toxic. I need to just move on. Life is hard enough as it is and my daughter and son-in-law have and adorable little boy who love me just as I am.

Thanks, Blue, Hugs, x

[Wednesday]

Hello lovely Carol,

Thanks for checking in on me. I am just slow at present

I can't get this dam lung disease. I think what the docs are saying is that it is just going to take a long time and a lot of rest. It sounds like everyone is having a hard time this spring, I hope you asthma is okay? I don't know it but I'll look up the zootopia sloth you mentioned.

How are you going? Are you feeling encouraged with your current results?

Nap time, zzz

Hugs lovely, xx

[Lost_Girl]

Hi Ava,

Lots of rest it is then and time. You will kick it eventually.

Very true about your own beautiful family. Do you use Skype to keep in touch with them?

Alas my Dr thinks my 3 days of sleeping were due to some sort of weird cold. I had pleghm on my lungs that I hadn't noticed (I know, how out of it must I be haha). She put me back on puffer steroids and tablet steroids and now I am hungry haha. Sigh. I do feel better after a day on them so that's positive for me.

I will catch up again soon lovely. I am exhausted after a day at the school for a fundraiser.

Rest up xx

[Wednesday]

Hello dear Carol,

You poor thing. Umm, yes, not to notice that are unwell is not a good sign. In fairness you have a lot on your plate with three children and a whole lot of other stuff going on.

Steroids are annoying the way they make you hungry even when you know your not hungry. As you said quick hide the treats! Oh that doesn't work because you know where you hid them, okay just eat them (grin).

Hugs, x

[Lost_Girl]

Dear Ava,

Oh you did make me laugh, in fact I almost snorted. Funnily enough despite the hunger I am too tired to be bothered to chew let alone get up and get snacks (which I only do once the kids are snug and safe in their beds lest they get a bad example of course haha).

I am sympathy sleeping for you dear Ava. I went to sleep at 2am last night and woke at 6pm when hubby came in the bedroom. I thought he was getting ready for work and was most confused when he was getting undressed. World gone mad. Now my sleep is all messed up. I am about to go rest.

I hope you are getting lots of it. If they say rest will help get you better than rest up I say.

Here is a virtual flower arrangement for you. If you type into the internet Jodie McGregor coral garden you will see the beautiful arrangement I have selected for you and because they are virtual you need not worry about any scent.

I have a birthday to go to with my daughter tomorrow afternoon and then on Sunday she sings in the choir at the local fair.

Thinking of you xx