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]

Dearest Blue,

Thank you for your kind words. I tend to think that people will do the best they can, but that limits us all! Just a little frustration showing. The research is science based and published by well respected organisations its just newish. I don't talk with the medical profession of anything other than science based info. I have of course tried every natural, alternative medicine around the place.

I find it hard to keep going like this it is hard to find a joint or limb that doesn't hurt. I have a vey high pain threshold and dislike taking the pain meds that I am readily prescribed, but Have too. I was shocked by a recent photo of myself, I didn't recognise myself. I have been very tough for as long as I can remember but times like this test me.

Lovely Blue you seem to have your own set of issues and a very tiring job how do you manage?

Hugs, xx

[Lost_Girl]

Dear Ava,

I don't know how you do it. You are an amazing woman and so incredibly kind to keep giving to others despite your own pain and discomfort.

It must be so hard having to make choices when you can't backtrack later if it doesn't work out. Who makes up these rules?

I am glad you are able to do the research and learn as much as you can to assist you when dealing with all of this. Amazing, as I said.

There's no harm in seeing a psych. My pain management Dr had recommended one that specialises in pain to me but last visit said I don't need to go. I am still considering it though as I finding waking up a tough thing and it is not improving. I am wondering if seeing a psych would be a good idea given the xmas period coming up and all the emotional crap you have to deal with from P and his family. It might be good to have another outlet. You can always do it here too lovely. In fact I think you deserve some good rants. I am a good listener.

Love and hugs xx

[Cornstarch]

Hey Wednesday,

I'm sorry you're having such a tough time, it sounds like you have terrible arthritis or chronic pain or something in that category of conditions that is really difficult to treat or at least alleviate.

I won't go into try this, try that, I bet you've tried and considered everything. Unfortunately as amazing as the advances in medicine are in the last 100 years we have not solved or answered everything. There's lots of unchartered waters. It's extremely common that people who suffer from chronic pain also experience depression.

But it does not make it any easier for you simply knowing that.

I hope you get some reprieve soon.

Corny xx

[Wednesday]

Hello Carol,

Government makes the rules, no hope of changing anything there.

I rang to make an appointment with the psych, but can only get on a waiting list for sometime after Christmas. I wonder if you have a version of PTSD with your waking issues? Waking has been so terrifying for so long now. Maybe some hypnotherapy would help to desensitise you?

You are wonderful support and listener, thank you. I am so exhausted by all the pain and stuff, I can hardly move. It takes high dose steroids and 3 cups of proper coffee and lots of tea to get me through the day. The steroids are good for the pain, but boy do I eat! The coffee gives me the energy to pretend I'm coping. I am waiting on some blood test results, but the early results are helping explain some of the symptoms. I asked P to review some of there research, which isn't really me but a friend, he didn't look at it. He doesn't seem to notice much about what is going on around him.

I met P's son and his family for the first time in ages. It was uncomfortable and the babies no longer recognise me. I took some things with me (beads, books and cars) and won them over a little, but have lost the lovely bond we once had. The son was quick to bite at a comment I made. I probably said it wrong I was very nervous.

Honestly I am low and dislike myself so much for my many failings I can hardly bare myself. My son got angry at me and told me to stop acting like a victim, I cant really remember the conversation any more than that (I have a great ability to forget) I was on the phone and sobbing for ages. I guess I am. Thank you for your lovely words, lucky for the AD's heh. I think my daughter and dog would miss me.

Hugs, xx

[Wednesday]

Hello Sweetcorn,

Lovely to here from you, I hope you are okay?

I have multiple conditions all auto immune, so its easier to just to say auto immune. So far bloody painful and not fixable. The meds have caused some nasty side effects, so you have to wonder the point sometimes. Quality or quantity and how do you work out quality. Is it just being kept here by meds, what is quality of life?

I plod on but the costs and stress of everything is getting to me.

Hugs, xx

[Cornstarch]

Hey Wednesday,

Autoimmune conditions suck. I'm sorry you're struggling with it, it must make you weary. There are a lot of them in my family too.

I know I have referenced Bessel van der Kolk's book to death on these forums, but I distinctly remember the passage where he states his curiosity as to why so many people with childhood trauma go on to have autoimmune conditions later in life.

Us attacking ourselves/cells maybe? Self blame gone cellular?

It can't be easy with your husband too. Anxiety disorders start to feel contagious. I'm deadly serious. As a sufferer I can totally see that for onlookers, carers and helpers it's almost as if the energy transfers onto them and soft furnishings as well!

Warm cuddles, remember I'm a joey just like your kids

xxx

[Wednesday]

Thank you for the warm cuddles dear Joey-Corn,

I looked up your author and will read some more. It does make sense that our bodies react to trauma on a cellular level especially if you a have a genetic disposition to whatever.

Maybe another reason that forgiving and forgetting is difficult. So many creeps in this world doing so much damage in so many ways. I truly hope that karma gives them what they deserve. That said what did I do for this life?

Warm cuddles dear one, xx

[Guest_9809]

Hello Ava. Nice to see you on here a little more frequently than you have been of late. Even if only briefly.

I just wanted to comment on your post to Carol yesterday. You said that you had a bit of an argument with your Son, and you thought that perhaps only your daughter and your dog Happy would miss you.

I'm sorry that the phone discussion with your Son upset you. Its so frustrating for our loved ones to see and accept that (in your son's case) his mother is suffering badly and not improving. He must feel so angry that he is unable to do anything about it, other than to sit back and leave you to try to work out what treatment is available and whats best for you. Its the inability to help or do anything about it thats so hard for others around you. I know, because I feel that for you as well. I can only imagine how your son and daughter feel about it all. And I suspect they are probably not even aware of the full extent and seriousness of your illness?

And as for nobody other than your daughter and your dog missing you. Rubbish! Way outta line there Ava. (-:

As to karma and getting what we deserve. Well sometimes karma is inaccurately directed I'm afraid. It often seems that it strikes the wrong ones - those who least deserve the bad luck and bad vibes. Not much I can really say on that matter. I just wish I could turn the respective good and bad karma onto those who deserve it. If that were the case you would have such good karma!!!!

Meanwhile I understand your mounting feelings of distress, depression and resignation regarding your extremely painful and seemingly endless illness. At least the ADs are keeping you partly 'together'. I hope all the loving support you receive here can also help, even if only in a small way.

A gentle and loving embrace to you Ava. Because I am one of many here who cares. I assure you that I miss you whenever you've not been around for a few days.

Taurus xx

[Wednesday]

Thank you dear Taurus,

It's easy for me to see the worth of and in others, just not of myself.

I don't know where I'd be without the kindness of you and those on this site. Sorry I'm to tired to say much more. Love and hugs to you all, ! wish I could make all your lives easier. xx

[Guest_9809]

Thanks Ava, and I yours.

Give that dog of yours, Happy, a big hug.

Taurus xx