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]

Hello lovely,

Please don't worry about me. I hope you are all having a fabulous holiday. I bet your babies are over the moon seeing the animals close up. I can see you smiling as you watch them have fun. It is probably a good thing for you to have a mental break from the forum too.

It's nice to be missed! Yes lots of thinking to be done still. My brain is just to tired at the moment but I'll get there.

Love and hugs, xx

[Clues_Of_Blue]

Hey Wednesday,

We've crossed paths around the threads and I got the impression you had a bit going on with your health, but I didn't know your story until now. I can well understand your frustration and sadness. Especially when they don't understand or there isn't anything specific they can do, friends and family can really get it wrong sometimes in the ways they offer support. Whilst my problems are different, they're not really things someone else can fix, and I get a lot of shrugs or avoidance or "have you tried X really obvious thing that of course I've bloody tried?". And the worst of all, "think positive". Ugh! It feels like being brushed off or that they're just not hearing you at all, and that really sucks.

I don't have a huge amount of experience with physical health problems myself, though I am gaining an understanding as my partner has a serious heart condition that limits a lot of what he can do, physically. His attitude toward it is amazing, and he makes the most of what he can do with the limitations placed on him, but like you sometimes he just gets so frustrated and down. I don't try to make suggestions, it doesn't help, I just listen and try to understand, and it's clear that's what you need, too. That said, are you able to connect with others in your situation? A support group or something? They might have more useful ideas and know of better doctors that won't treat you like that jerk did, so at least you won't have that sort of behaviour to add to your list of troubles. I'm sorry you went through that, it's not right.

I've seen you give a lot of good advice and care on the forums, which I appreciate on behalf of those you support, and I hope just by listening I can help you out a little.

Blue.

[Wednesday]

Hello Blue,

Thank you so much for your post and your generous words. The BB forum has kept me going so it works both ways. You're right sometimes it is just having someone to listen that helps. So, thank you for listening. I hope your husband is receiving great care with his heart problem and that there is light close by at for you both.

I find groups incredibly difficult I am way to high on the introvert scale to manage. I tend to go into a facade mode and listen a lot, it is easier for me. I have a regular infusion, which is a day in hospital and the chat around the ward at that time is so sad. I usually come away thinking my life isn't to bad after all. I listened to everyone else's stories and everyone seems so much worse off than me. But of course I am receiving the same or higher level meds. It's just one of those reality check times, my body is not coping and has switched of my autoimmune system. It can't manage the range of medications I use to keep going. I have tried for years to keep it all together. I hate feeling like any kind of burden. I've always been such and independent woman.

It has dawned on me that I am gaining speed and my medical issues are increasing rapidly with no detours inside. I'm not sure how much quality there is in an exhausted life that is mostly sleeping.

Hugs to your and your husband. x

[blondguy]

Hi Wednesday

Thanks big time for replying 🙂

James, Bluguru and Carol are legends on the forums that I have learnt a lot from since they been 'on the air'

It really makes me feel mega grateful that they are here

That council appointed mental health worker that gave me my life back was a young psychiatric nurse.......he was a gem. I dont where he is now. I wish I did.

Here for you Wednesday and thankyou for the hugs....they are gift to me. I hope you find some peace on here xoo, Paul

[BballJ]

Hi Ava,

I just caught this post before i was about to log out and try and get some sleep, I had no idea you were dealing with something as detailed as you explained above. You know i am always here to talk so of course just wanted to remind you of that as you have been such a help for me personally.

My best as always for you.

Jay

[Wednesday]

Thanks Paul,

I do feel blessed to have such lovely on air pals, they are all gems.

Hugs.

[Wednesday]

Hi Jay,

Thanks! I've enjoyed our chats.

I think the illness stuff is what brought all P's GAD stuff to ahead, I just ran out of steam (literally, haha). It's been good to see it from his side with your help.

P will be back in a couple of days, so I'll try to find a spot for the pharmacy I have on the kitchen bench and put the house back together in between naps. There will however be no windows opened until the pollen and wind gods start behaving!

Being alone in the house I can sleep a lot so it's not too bad. Maybe when the spring hay fever season drops off things will be easier for me, who knows. I just sound breathless and squeaky now and less like Darth Vader, which is a considerable improvement!

Thank goodness for AD's!

Okay you wind and pollen gods, give me a break.

Hugs, I left note on your thread...

[Lost_Girl]

Dear Ava,

When I was at my lowest and all I did was sleep and watch tv and log in here on occassion I wondered too of the quality. I would text my busy friends with their busy lives and then after a while I stopped because I felt so jealous of what they were able to do with lives moving forward when mine was not. I got a great sense of satisfaction being part of this forum. If I could just make one person's life a little better or save someone from feeling lonely or give a oerson hope then that is more quality of life for me then I will ever find pushing paper for the corporate machine.

Ava, the support you provide here is quality. You are wanted and needed and indeed loved here. I hope you realise how much you offer others. I wish I could offer you more.

You were right about me standing back and watching my children. It is still amazing to me to feel such love at their enjoyment of experiences.

Thinking of you tonight lovely xx

[hayde_1694]

Hello wednesday i know how feel i used to be there myself i worked at my anxiety and i took control stay positive you will make it through it what i said before was not ment in a rude way stay strong i would like to stay in touch

[BballJ]

Hi Ava,

Anytime someone suffering from GAD like P and myself, it plays a major impact role on our spouses like yourself, Im glad you have managed to rest up whilst P was away, that is always a good thing and not sounding like darth vadar anymore (hehe) but still i am also sure you cannot wait to see him just for a big hug. I get hayfever as well so i am with you on these damn pollen winds, today was rough for that.

Do you find the AD's are a major help for you?

My best as usual 🙂

Jay