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.

[Wednesday]

Oh blue you made me laugh, I have been trying to Shatnerise chrissie songs, Rudolf will never be the same!

I must be asking for something at the moment (okay universe that is enough). My daughter also gave me a serve about what it feels like for her to see me this way. Same issue of course. they also don't know how lucky I am to have adorable friends to party with, do they!

I hope LM is home again.

Cuddles, xx

PS I'm just going to nip over to France (did you know I have a magic carpet) I'll pick up some real Champagne and if I have time Burgundy, anchovies, cheese and freshly backed baguettes and drop them in to BB cafe so help yourself. xx

[Wednesday]

Hello dearest Taurus,

I am looking forward to going away, though my energy levels are very low and I will disappoint them by not being able to keep up. They will be kind and patient of course. I hate being a nuisance and not keeping up not being able to hide the problems I have, various meds to help tho. My daughter is also getting upset with me. I can't be bothered arguing with her on any level life is to short for silly quarrels. She says that my memory is poor, it is, though I'm not convinced it is all one way. She doesn't respond at all well when she sees me ill. She asked me did I know what it was like for her to see me so sick? I can only guess it is hard to support her through this too. I minimise as much as possible with both of them now. I can't deal with their anger even though I understand that it is because they cant help.

Taurus, I don't think I would be here if it wasn't for the lovely people here keeping me together. I am very grateful and fortunate to have so much very special support.

I haven't made any treatment decisions. I have made an appt with a psych, my GP thinks that my head is to depressed to remember things. I guess my decision is to get as much as I can out of life now so I take whatever tablet is on hand to get me through each day and night.

Love and cuddles to you and Tammie, may the holidays be delightful and 2017 be fruitful. xx

[Wednesday]

Carol dear one, my heart soared when I read that things are little better for you now. You have done so well, give yourself a big squishy hug from me.

I will travel. I can't wait to see that little smiley face and play cars, if I am very lucky I will be allowed the fire engine or a truck or the noisy red car, grin.

I have resigned myself to taking whatever med it takes. I seem to have a bit of a rebellion going on with my two at the moment, but you can read in Taurus's answer if you have the time. I am getting very zen about things.

Dear one have a fabulous time with your wonderful babies. You have had one tough year, 2017 will just have to make up for it, or words will be spoken!

Take tender care of yourself. Love and hugs. xx

[Croix]

Dear Wednesday

Thanks for replying and including me amongst your many friends

At one time in the 50's I was at school in London and spent my holidays with my Nain & Tide (Welsh Grandma & Grandpa) riding up on the Irish Mail. The 400 klm from London to Holyhead at the northern tip of Wales took around 4-5 hours with only one stop.

Back then it was quite usual for children to be unaccompanied.

It was a dream place for a kid, even during the heavy sea-fogs one could lie in bed and listen to the naval cannons acting as a warning to shipping from South Stack.

Sometimes all one person can give another is a happy thought. I learned this in desperation when my son rang me daily after the unexpected death of his partner.

I hope my amateur effort gave you a moment or two to feel my enjoyment - in a place elsewhere.

My best wishes

Croix

[Wednesday]

Hello dear Croix,

I loved your story, such a beautiful memory. Your Nain and Tide must have been such special people to have you have loved them and their home so much.

It must have been an overwhelming experience for your son to suddenly lose his partner, lucky he had you to call on. You're right there are often no words, but just knowing that there is someone out there for you is fabulous. My BB friends are very special to me, sadly we never meet. Maybe that also has its advantages, my BB friends know more about me than people I know. there are times I just want to run around to their homes and give them a hug, or just be close by, it's sad that I can't.

BBer's are lovely and wise you'll get to know many as you spend time on the forum.

Hugs, xx

[Clues_Of_Blue]

Ava, if you think Rudolf will never be the same after Shatnerising it, try "Santa Baby". 😉 Glad I can give you a laugh.

Sorry to hear now your daughter is giving you a hard time, too. Of course your kids are going to feel things about what's happening with you, but you can't hide the unhideable, nor should you have to. My partner is my strength and the one who kept me going when everything seemed impossible. But in contrast to his mental strength he is physically pretty frail. I hate that small exertions or common illnesses or situations can have such a big impact on him, but that isn't his fault. I wouldn't dream of asking him to pretend he is well just to make me feel comfortable. I tell him how it makes me feel, but I also understand how frustrating and limiting it is for him. We live as best we can around it and are honest with each other when it is wearing on us mentally. I wish your kids could get a grip on appropriate ways to communicate about such things, and show some care for how you feel in the process.

In happier news, said lovely man is home again, now. I am relieved. Though now I'm getting sicker again, which is rather inconvenient. Took today off work to recover a bit before the really nutty shifts before Christmas. In light of that, I'm pretty tired, so will reply to your post on my thread a bit later, when I am a bit more rested. For now, just wanted to let you know that he's okay. The Champagne and nibbles sound good, I'll get into them after a good sleep, too. Take care, my friend.

Blue.

PS Croix, you have an engaging style of writing, that really brings the places you write about to life. I know it wasn't for me, but thanks for sharing.

[Croix]

Dear Wednesday and Blue

Why Blue, that's extremely kind of you. As I mentioned I wanted to do SOMETHING but platitudes and 'helpful' suggestions, or even sympathy all seemed trite.

I don't know why I said what I did except I hoped happiness and a different world were able to be passed on , and that time in my life came to mind.

Blue I have no idea of your circumstances but it would be my pleasure to offer you it to you too. I don't think you'd mind would you Wednesday?

(After all when I become the new Dylan Thomas you can both say you have an original - you might have to hold onto it for a longish time though:)

My best wishes to you both

Croix

[Cornstarch]

Hey Wednesday,

I hope your children get to enjoy your beautiful company over the holidays. As you say, their heart no doubt just breaks for you.

I've got lost with all the threads, just been trying to keep my anxiety as low as possible. Remember it does transfer through soft furnishings and is contagious so P might transmit some! Urgh!

I'm bunkering down and taking a break, shedding, reflecting and writing lists for my 2017 goals, wants and will do's. I will, I will, I will do all of those things I'm meant to do and not do the things I'm not meant to do. LOL.

Have a safe silly season.

Eternal gratitude for your love and support.

Cuddles, Kanga Corn xx

[Clues_Of_Blue]

Croix,

Oftentimes we are confronted with the struggles of others which we can't fix, as in the case of Ava's pressing health concerns. Platitudes, suggestions, sympathy... you're right, they often have the opposite of the desired effect. I like your approach, and I think the sharing of a happy memory to separate someone from current reality and sadness is a great idea.

My circumstances... well, they're better than they were a year ago. I won't take over Ava's thread with them, but if you're curious I have a thread of my own in Long Term Support ("Blue's terrible, horrible, no good, very bad day"). Much of what I wrote in the first post still holds true, if to a lesser extent.

Nice to meet you, and I hope you nurture that writing talent of yours (I'm trained as an editor, you know...). Though worded a bit differently, the setting of your memory reminded me of the old Enid Blyton books I used to read as a kid. Loved them. 🙂

Blue.

Ava, hope you're doing okay with the silly season and any medical kerfuffle you're going through at the moment. Have I mentioned I love your profile picture? I had a little frog for a time. Found him among the beans at work, of all places. He was so tiny and beautiful.

PS I'm on the mend from my bug, your bug containment chest at the bottom of the sea must have done the trick. 😉 Sir Pecks has checked my temperature with his beak in my ear and given me the all clear. If you need Dr Birdie, just lemme know!

[Croix]

Dear Wednesday~

Thank you. Yes my son's partner died of leukemia quickly after once course of chemo. He want away and phoned me one or twice a day. Quite frankly I dreaded those calls, however in time I found that storing up an quiver full of jokes - both p.c. & otherwise, helped a great deal and looking back - just my presence lent him strength.

Friends on bb - well maybe it as well not to meet, the relationships would undoubtedly change, and not all survive. After all we are just ghosts consisting of faint keystrokes on a screen, whose meaning, life and bodies are supplied by the reader, clothed in their preconceptions and given features by their imagination.

In some ways we are both inside boundaries, mine my own limitations, yours the confines of your illness.

Perhaps one day if you have the strength you might care to share a brief moment when you were happy from your past (if I can stumble though I'm sure you'd do as well or better). I would enjoy that.

My very best wishes

Croix (who rabbits on a bit)