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.

[Music_Freak]

I'm not sure if I can add anymore, but I just want you to know that I'm happy to listen whenever you need

[Wednesday]

Hello dear Carol,

It is just exhausting seeing doctors and making appointments, hang in there. I'm pleased that your pain levels are lower that must be a relief, the ongoing exhaustion id a dam nuisance though. You are such a gorgeous mum to your babies, you must feel incredibly frustrated at times. I just want to share a story. I wasn't able to give my babies the time and attention I wanted to when they where younger and have always felt guilty that I wasn't a good enough mum. I loved them to bits of course but...

One day I had a conversation with my now adult son and apologised to him for not being the perfect mum, not always being there at school sports day, that he had to go to child care during school holidays and so on. He looked at me in amazement and said but you where there and what's more he loved the school holiday child care it was great fun! Of course my memory and his is quite different. What I am trying to say is that don't for one minute allow yourself to worry that you aren't being the best mum ever because of this illness. Your babies are going to remember the love and fun times, the birthday parties you put so much work into, the story or the movie when you sat and cuddled up together, just being around you. Those days where you aren't 100% they may not even notice, well because they are children.

Yes it was very cheeky of me to upset traffic in an ambulance, though I did get a big smile from my grandson who was quite impressed that I rode in the back of an ambulance with the lights flashing! Most happy for anyone else to take a turn and stay far away from any emergency departments. 🙂

I love your rooster story, it will keep me chuckling for days.

I'm very tired, but hopefully as the days progress my energy levels will increase. thank goodness for coffee! P has been a bit better since he got back which is helpful too.

By the way, do you have any idea what would be an exciting present for a three year old boy? He is a boy, boy but loves everything and already has a million cars. Maybe a dinosaur book?

Lots of love, hugs.

[Wednesday]

Hi Blue,

So kind of you to check in me especially when your feeling unwell, spring bugs, aghh! Haha thanks for keeping your bugs on yours side of the airwaves!

How are you going? It must be tricky working and managing a relationship with someone so very ill.

I hope you are being kind to yourself and a have lovely weekend planned.

Hugs, x

[Wednesday]

That you so much Narelle you're a sweetie.

Hugs, x

[Lost_Girl]

Hi Ava,

I am sure you were a terrific Mum too. A lot of Mum's worry about childcare and holiday care but the kids do love it. How sweet of your son, and all true I am sure.

Most 3 year old boys I know love Paw Patrol which a show all about dogs. There are lots of toys branded with this, they have books too. My son still says cars whenever we ask what he wants no matter how many he has already.

There is a thing called a car launcher which is either hotwheels or matchbox, it allows them to put those little cars in and it launches them so they roll across the floor. It is one of my son's favourites. It is in a small packet near the hotwheels/matchbox car section in most stores like Big W etc.

You would be super cool to a 3 year old in the ambulance but yes, let's aim to avoid them 🙂

I am glad P is being better.

Me xx

[BballJ]

Hi again Ava,

Thought i'd see how you and P are going the last couple of days... any plans yet for the weekend?

Hope you are feeling better and the pharmacy has made its way to the back of a cupboard hehe

Jay

[Clues_Of_Blue]

Hey Ava,

I'm doing okay. Sort of sick still, but it's back to more manageable levels. Stupid bug has been hanging around for several weeks, it's annoying.

My other half fortunately has his condition managed fairly well at this point. He's young still (a tad younger than I) and was born with his heart problem, is used to the regular outpatient visits to the hospital and the physical limitations. He won't be doing any marathons any time soon, but insofar as it isn't too physically vigorous there's plenty he can do and he's very independent. No overnight hospital stays so far since we've been together. In that way, managing things around work isn't really that hard.

It's my week-end off this week-end, so should be good. Got a little social stuff planned, and hopefully I can get some rest, too. May we both have week-ends that go smoothly. 🙂

Blue.

[Wednesday]

Hi Carol,

I'm still chuckling over your rooster story.

Thanks for birthday ideas, I'll go hunt them down. I'm sure the hot wheels launcher would be a big hit and he loves dogs, so both great suggestions.

Have a lovely weekend with your adorable family.

Hugs, x

[Wednesday]

Hi Blue,

Yes indeed a very stupid bug, cant it find somewhere else to attach itself too! I'm glad that you are feeling a bit better tho.

People with chronic illness do seem to have an ability to rise above it and enjoy their life with its limitations. I was at the doctors this morning and the man before had one arm and one leg. Boy did I feel like I shouldn't be complaining!

Love is wonderful isn't it. It really doesn't matter what the person looks like (not talking about Trump or Edelsten here) or what condition you or they are in we just love people for who they are. All the peripheral stuff fades away.

I hope your weekend off is just perfect for you and your other half.

Hugs, x

[Wednesday]

Hi Jay,

I will get over this %$#@$#% lung thing any minute now, till then I guess I'll just make like a sloth and move little. I might need another cupboard for the pharmacy, so until then I can't possibly move it from its current position.

No weekend plans, I hope you have some ting nice planned. P is getting that frazzled look again. Something is worrying him, it will come out soon.

Hugs, x