I'm not managing so well anymore

Wednesday · ‎28-09-2016

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 · ‎03-10-2016

Thank you dear Carol,

Your lovely words mean a lot to me and you offer me plenty. You are such a kind, intelligent and compassionate woman I am always grateful for, your support. I'm pleased that you enjoyed your children's innocence it is so very special and time goes so very quickly.

It's a hard to know if you add any value to anyone else life. The forum has been a quite a life saver for me. As you say baby steps.

Hugs, x

Wednesday · ‎03-10-2016

Hi Hayde,

Welcome, it's nice of you to drop in. All comments gratefully received.

x

Wednesday · ‎03-10-2016

Hello Jay,

Umm, so I've not done the jobs I thought I would do, might need to take a nap and have half a dozen cups of coffee first.

Absolutely the AD's have worked for me, without them I doubt very much if I would still be here (thank you major depressive illness).

P's back tomorrow, it will be nice to see him. I'm just bit nervous of any travel GAD that I'm not quite up to managing at the moment. There is that depression / anxiety crossover again. Bloody BT's!

Focusing on creating good neural pathways.

Hugs. zzzz

BballJ · ‎03-10-2016

Hi Ava,

That's ok the jobs didn't get done, all in due course 🙂 the nap sounds great, i just had one on the couch hehe, i am a little sick with a flu, not sounding like Darth Vadar but the constant sniffling is quite annoying hehe.

I, for one am glad the AD's worked for you, you're a big source of strength for a lot of people on these forums i can tell, me included, so please don't forget that.

Hopefully P arrives home in a good mood and just happy to see you, I'm sure he can't wait 🙂 I know it's tough for you to manage but I know deep down, him being home will always be good for you as well. Hopefully you two can go out somewhere nice for the day on the weekend, if the weather holds up... and the hayfever stays away hehe.

Please let me know how it all goes,

My best as always, Jay

Lost_Girl · ‎04-10-2016

Hi Ava,

You are right of course unless someone tells us that we add value it is hard to quantify. I can tell you now that you have added value to mine by sharing you story and for the kindness of your words and the hope you have shared for me at times when I have had little.

It is a lovely place this, where we open our hearts so readily and yet some people may go through life with their best friends and never tell them they love them. I started doing this a few years after my Mum passed as life seemed more precious.

Funnily enough people seem more comfortable in sharing feelings with pets in real life than others. I have a male friend who always talks about his love for his dog but never mentions his wife.

So don't sell your help short just because you don't necessarily get told of the value. It goes both ways too in terms of caring. Sometimes people care a lot but can't find the words. Only yesterday a dear friend I have was telling her dog Holly how much she loves her but mentioned that she often has people in her thoughts but is unable to tell them how she feels.

I read that you were worried about the possibility of having to deal with P's GAD when you are not so well right now. Perhaps you could feign sleep? It does seem unfair that you have to be someone else's rock right now when you need the care. I hope he can show you some care too lovely, you deserve it.

Love me xx

Wednesday · ‎05-10-2016

Carol you are such a gorgeous woman.

Thank you for your lovely words and kindness. P's back, I'm so tired that in a way it has less of an impact on me.

It is easier to tell our dogs that we love them. I try really hard to let people know how much I do love them because I would hate them not to know. I hope the dear friends and their lovely doggies are both well and happy and also know how very much they are loved and appreciated.

You are quite right the corporate world is not rewarding and talking to people on here can be just the loveliest experience. You find out fairly quickly once you leave the corporate world for any reason that you are just a position number or title, friendships often disappear. The long hours and care you put into a job is for the pay you get each fortnight. The corporate world is a business not a friendship and the HR department is only about the business, a wolf in sheep's clothing.

I've been wondering how you are going with your new medical team, but a little worried to ask since it has been such a tough journey for you?

Hugs, xx

Wednesday · ‎05-10-2016

Hi Jay,

Thank you for your very sweet and kind words. What would I do without you lovely mob to keep my head above water?

Sorry to hear you have the flu, I hope you're feeling a little better on all fronts. Oh and do please keep your bugs to your side of the airwaves! 🙂

P is back, happy, safe and sound he had a fabulous time, just jet lagged.

I am really looking forward to getting out of the house, so hopefully P will be around on the weekend and we can do something together. He may be running a bit scared given last time we tried a weekend outing I ended up in an ambulance and hospitalised mutter, mutter 🙂 !

Hugs, xx

BballJ · ‎05-10-2016

Hi again Ava,

I think we all keep each others head's above water that's for sure 🙂

I will keep my flu bug on my side, nearly over it, maybe one more day of rest.

Glad P is back and seemingly happy from what you said... great thing about GAD... we still have moments when we are full of life and just happy 🙂 Hopefully you both will manage to make it out this weekend to spend some time together, I hope down the track I can have a relationship that is happy like yours even though it has its difficulties.

Hugs, Jay

Clues_Of_Blue · ‎05-10-2016

Hey Ava,

Sorry I haven't been around much, work and some annoying bug have had me pretty tired. You sound in better spirits at the moment. I'm very glad to see P has come home feeling good, that undoubtedly takes a bit of stress off you beyond being a good thing in itself.

I do hope you're able to get out and about and have some fun without any ambulance rides this time. I'll be sure to keep my bug off the airwaves, too. Thinking of you.

Blue.

Lost_Girl · ‎05-10-2016

Hi lovely,

Thanks for asking about me. Things are ok for me. The new pain specialist has given me stronger pain meds which have my headache pain levels low now. I am now dealing with the exagerated pain from doing normal activities which feel like a big workout at the gym and leave me exhausted. I am working through the pain management book they recommended, slowly, and copying out key points to help me remember them. I go back to see him on the 20th to discuss what happens next. I still need to make an appointment with the new pain psych, I have left a message and am waiting for them to return my call. My next neurologist appointment is the 10th Nov.

I hope the rest is helping you Ava. I do hope you get P to take you out on the weekend. I found just being away from home was reenergising, mostly emotionally. I hope it helps you too.

It is a bit cheeky getting all that traffic priority, on your weekends out, by Ambulance hopping. You have to stop hogging them and let someone else have a turn 😉

You are spot on with your description of the corporate office. I used to be bright eyed and believed the company had everyone's best interest at heart but it is just about making money. I have indeed found out who my real friends have been from work in this last year. I find it strange that I am not as sad about those losses that I thought I would be. I do wonder sometimes if that is an effect of the ADs.

In other strange news I got to chase a rooster around my suburban backyard today while the council guy tried to catch him. Poor guy was lost, so was the rooster. When hubby called the council to log it, the council lady was laughing so hard trying to work out what code to use while in the background her colleagues were shouting out "dinner".

I am glad to hear you are less like darth, though squeaky is not ideal either. I am hoping it improves some more soon.

Love Carol xx