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]

Hey Ava,

I confess, I do like being called clever (I try not to brag about my IQ, but it's nice when it's noticed), so thank you - but I'd like to remind you not to sell yourself short in the process. I think if I tried knitting it would be much the same. I've had a crack at sewing - can make something functional, but pretty it ain't. We all have our skill set. You mentioned you love gardening, maybe you can advise me on that, I'm crummy at it, though I do try. Have bought a couple of bottlebrush trees and gravileas to attract the birds and I have clay soil. Any suggestions on giving them the best start?

A lot of people are getting this long-term bug. I could see a doctor, but I'm sure I'll hear the same as the others - whole lot of nothing to do but rest, at the end of which it comes back anyway if you lose ground on that. Reckon it's a matter of waiting out second winter, the conditions are perfect for incubating viruses. Sigh.

Had the week-end to myself this time, my lovely man was busy. Got some jobs done though, including making the spare room usable. Pretty happy with that.

I'm up for that bug-beating party whenever you like, and certainly a glass or three of wine with you. 🙂 Hope this week-end has had some good things in it for you.

Blue.

[Lost_Girl]

Hi lovely,

I wrote on my thread to explain my absence. I have been thinking of you though dear friend.

My daughter has convinced her Dad. Thanks for the hint about rescue centres not advertising these types on line. I shall get hubby to take us this weekend to have a look. I have also found some reputable breeders outside of Sydney that I have sent enquiries to in case.

How beautiful that your daughter was able to sing to her hubby, so very romantic. Kids are funny aren't they haha.

How are you feeling at the moment Ava? How's the breathing and the swelling in your hands. I have been hoping for you to improve.

I have been back watching tv in my "spare" time. I found a lovely drama comedy called Drop Dead Diva about a 24 year old model who dies and finds a way to return to Earth from heaven. She ends up in the body of a voluptuous super smart lawyer working with her prior fiance (of the model) and with a guardian angel whose purpose is to stop her getting back with him and ensuring she moves on in life in the new body. It is a nice distraction.

Have you found anything interesting to watch?

Much love to you and a gentle hug xx

[Wednesday]

Hello dear Carol,

Please look after yourself first, your babies need you to take very good care of yourself.

I know I knew that lovely baby of yours would get her daddy onside, hehe. Now I guess you are going to have to have one of those talk before going to the dog shelter, you know the we are just looking and not buying a doggy, or you may come home with three or five! Good luck mum, put your very best brave face on.

Thanks for asking about me the lung stuff is much the same, baby steps. The inflammation is actually across all of my body it's just easier to talk about my hands. I had a fall a couple of days ago, but am recovering reasonably well and there is always another table in my personal pharmacy when needs be.

I been watching the Good Wife. You may know it, I like the lead character, she has strength, courage and morals. It reminds of when I was younger and had life somewhat under my control. It also has a lot of seasons so would take a while to get through!

An interstate friend was hospitalised (psych) about a week ago and I feel so helpless. I wish I could hop on a plane and go give her a hug. She asked me to go and stay with her, I can't and even if I could it wouldn't work, she is far to ill. Some other friends are helping though I fear she may never come out of where she is. I call and let her know I love her. I even sent her hug jumper, which she specified the colour and length. She tells me it is quite useful when the white coats are around. Just talking..

No need to to reply, take the very best care of you, I left a post for you.

Hugs, xx

[Lost_Girl]

Hi Ava,

We are heading out this weekend to the nearby shelters. The hard part is reminding the kids about my allergies but the oldest too understand enough.

I didn't realise about the inflammation. I do so wish there was something that medical science could do to help you heal quickly. I think of you often. You are such a beautiful soul.

I do understand about not being able to be there for others. I hope you trust her other friends are doing the best they can. I hope she gets the help she needs. I am glad she knows how much you care. I know that would make her feel loved.

I finished watching The Good Wife last week. I had watched all but the last season on free to air TV over years. It was my favourite show for some time. I missed the last season due to illness. I found it on Netflix and I was so excited. Of course now I am sad that it is all over. I always feel sad when great shows end, it is like losing friends haha. I find the same with novels which is why I favour the sci fi fantasy series with 10 to 12 volumes or more.

Rest easy beautiful lady,

Much love to you xx

[Wednesday]

Happy dog hunting Carol and family.

I hope the perfect pooch is sitting their when you arrive.

Good luck, Hugs, x

[Cornstarch]

Wednesday you come across as a very 'self contained' person. And it appears that your experience with the health system has been far from positive on many occasions. This makes it doubly as hard to manage your condition(s) because then you just second guess yourself and downplay the battle, struggling on.

I hope your partner is supportive, that would make a huge difference.

I'm the kind of person that tries to see the funny side of their condition and reading your posts with regards to your partners anxiety is really funny. Is that weird? Us crazy cats on the anxiety spectrum are just neurotic. I think that's why it is so frustrating, you know your brain is being irrational and neurotic and yet you can't stop it!

Post away your frustration with anxiety disorders and come up with some hilarious gags. I'll laugh with you! We are a ludicrous mob.

And then cure me, OK.

[Lost_Girl]

Dear Ava,

It has been a few days since you have posted here. I hope you are not struggling. You are often in my thoughts and I wish things were easier on you.

I admire you so very much for the care you give me and others especially when your burdens are so much more than mine. You are such a treasure, I am honoured to know you.

Well we had no success in finding a rescue poodle cross or bischon. I spent a day calling everywhere within driving reach too all to no avail. I do feel sad knowing I am so restricted.

However we have found our fur baby elsewhere so we now have a puppy cavoodle. She is black with a very tiny line of white on her chest. There were three pups left in her litter with one already spoken for. I held her and her sister for some time to check my allergies. The only reaction I had was small rashes where she licked me but they didn't spread or turn into full on hives and I can put my face to her fur without my throat closing up with allergies so I figured that was the best I would get.

She chose us. After I worked out I was ok with either, she came over and told me she was the one. As a family we had a list of names and then the children voted for their favourite and we named her Storm.

She has brought so much joy in the short few days we have had her. I have seen my hubby laugh more than normal. He was always against indoor dogs and hated people kissing their dogs and couldn't understand the relationships people have with them other than functional (him being brought up on a working farm). Well in the last few days I have seen him kiss Storm, hug her heaps, let her give him kisses on the neck and face and even told her he loves her!

The kids adore her. My 4 year old is still a bit scared as Storm tests out her teeth on moving feet especially with socks. He is getting better now I have taught him how to "be a tree" and stand still until Storm loses interest which happens quickly so it is all working out.

My daughter is in love. I snapped a picture of her holding Storm and she has her eyes closed and there is such love on her face, it's beautiful. My eldest waits until the younger two are in bed then has some special one on one time with her.

I love her to bits. She has me moving more. She likes to sit on my feet. She loves her tummy rubbed and enjoys a cuddle when she is tired.

How are you feeling my friend?

Love me xx

[Guest_9809]

Lost Girl, I do so love a good puppy story. The new addition to your family sounds adorable. Perhaps you will replace your current profile picture with one of little Storm at some stage. Those beautiful flowers in your current picture may well have seen better days by now?

Wednesday, it sounds as though you are going through a really difficult time with your auto immune illness and everything. It must be dreadful for you, and I really feel for you. I wish it could be so much easier for you than what it is right now.

Its also hard knowing that you have a friend who is in need of support, and yet you are unable to be there for. I'll bet she truly appreciates that hug jumper you sent her. I was given a virtual hug jumper once by a lovely lady who was unable to be physically there for me when I was going through a particularly difficult time. Honestly, it meant so much to me. I was never really able to tell her just how much it did mean to me, but it meant a lot. I am confident that your friend in hospital values that hug jumper you sent her just as much as I did my virtual one. Is she still in hospital? I hope she is making some progress and doing well.

How is your dog Happy going? I hope she continues to be a comfort to you, like Lost Girls new family addition is to her. I met you a few days ago when I commented on your bike profile picture. Its one of those photos that seem to draw you into it, one that you want to know more about. Are you able to go bike riding at all, or does your illness prevent that? Perhaps one of those exercise bikes would be okay for you. Nowhere near as good as you cant actually go anywhere on them, but probably safer for you and still of some benefit perhaps.

Take care lovely Wednesday.

Taurus xx

[Lost_Girl]

Hi Taurus,

Yes, you are right, the blooms have come and gone. They were given to me by a very special friend. I will look to change to Storm temporarily so that you and Ava can see my little Storm. Thanks for the suggestion xx

[Guest_9809]

Hey Wednesday, I noticed your new profile picture come up overnight. I really liked your bike pic, but I adore this little froggy picture. Beautiful .......... I really like frogs and have a number of different ones in a collection on my dressing table and hall stand. Crystal, porcellan, cheap china, the works. I love them all. I also once had a little dog who had a fascination for frogs as well, just like her mamma. Perhaps that is a common thing with small dogs? I have a different dog now though, called Tammie.

I notice that you havent been on here for a number of days now. I hope you are doing okay? Kind thoughts to you Ava. I hope its okay if I call you Ava? I see most people above do, so I hope I can too.

Taurus