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.

[Croix]

Dear Wednesday

My earlier dealings have left me cautious and I was one of them. Like everything there's a mix I guess.

Sitting around the forum for so long was essential, I took a really long time to trust, but now embrace it.

Starting my own serious thread as well as Croix Parler - I don't know, I get really wonderful support now in Getting to know you...or is that me? - A few months ago I just would not have realized it was possible.

I'm learning

My very best wishes

Croix

[Wednesday]

Oh dear, initially thought I had offended you then realised that you were talking about your own circumstances. There is of course a mix. Any organisation has people that the power has gone to their heads. Those that believe laws are made for others and not themselves. the ;anger the organisations the worse it gets. Sociopaths and narcissists thrive under such conditions. I dare say you know all this.

I rather that you had a sad ending to your career. I am sorry that happened to you. It is hard when all the effort and love you put into your job is not seen and you are disrespected. The quiet achievers (maybe you are one of these) are often lambs to the slaughter in these organisations and under these managers.

Are you okay with hugs? if so here is one from me for being brave enough to come talk on the forum. when you lose faith in the world or a person it is hard to recover and trust again. It is lovely to have you here.

[Croix]

Dear Wednesday~

You are a dear. As it happened my exit was purely medical, I'd survived all the slings and arrows of outrageous officers, it's just I kept going for years treating physical symptoms and not the root causes. It all accumulated until I ceased to function properly which brought matters to a head. This is all so long ago PTSD was not a recognized diagnosis.

I'd made a 10-year start on a career and gained a couple of promotions, but in those days mental ailments were a death-knell and I was out. Probably good in the long run, I'm still here, and have had two useful and taxing occupations since, teaching IT and now making things with IT.

As for trust, I'm not sure if the ability re-grows - or if there are hidden wells one does to know one possesses, but it remains a finite resource - probably the latter.

Either way it really is my pleasure to be here, all hugs gratefully accepted and returned with affection

Croix

[Wednesday]

Alas dear Croix, mental health is still a death knell (physical health is not well looked after either) in the work force and I have worked in some very big organisations. Yes they say the right things but there is a target on your back and you are not always so gently removed from the organisation. If you fight for the rights of others you to become a target. Organisations in my view rarely walk the talk. Again we are talking about people making decisions they are incapable of making or even coming close to understanding the consequences of such decisions. Oh the stories I could tell.

I am so pleased that despite what must have been a horrid period you have done yourself proud with new careers. Well done dear Croix.

May I ask how you are coping now with the remnants of that time?

Hugs, xx

[Croix]

Dear Wednesday

That's very kind of you to ask. I do cope - I'm still here. Was never really treated successfully - more the 'fix each leak as it happens' approach. Also it's amazing how many health professionals ascribe to the 'more is better' approach, particularly with medications. Pity, it's cost Workers' Comp enough over the years, perhaps they should ask for a partial refund.

My current psychiatrist, whom I've had for umpteen years, is very supportive and has recently come up with a new medication that allows me to reliably go to sleep - at least for 2-3 hrs, after which I most often stay asleep. It's a boon. Dread of Bed is Bad.

Unlike you the fetters are in my mind. How are you coping? I guess you are at home. Is that good? Other than chatting to curiosities like myself do you have an overriding passion to lose yourself in?

Have a Hug

Croix

[Wednesday]

Dear Croix,

Yes the dread of bed is horrid. I reach for the tablets too. You have an interesting picture and name, can I ask why you made those particular choices?

BB has been a gift for me and kept me breathing air.

I am so zombi like with the range of meds I take that I don't think anything counts as a passion anymore. I do love my little doggy. I've always been a big dog person but this one is a toy size curly coated fluff ball an ex RSPCA dog. I'm pretty proud of him he has come along way, calmer, happier, mostly obedient. I must get my act together and come up with a new trick for him to learn. We play hide the toy, which he loves.

I love my garden but am unable to give it the love it deserves. I try to do ten minutes every day. That too depends on how many meds I am on. I've taken AD's for over 30 years now! The steroids and other meds allow me to move more freely and reduce pain but have some complications, I'm sure you know the medication butterfly syndrome. An infusion later this week will turn me into a Michelin [wo]man and leave me an exhausted mess. Funny how meds take so much, but I guess without them I would be in a very sad state.

Last week I took courage in both hands and went to see a psychologist. First visit so not much to offer other than I have a lot to manage...

Sorry it's bit of an ordinary day.

Hugs, xx

[Croix]

Dear Wednesday~

I chose the walrus because it is me - once vaguely imposing, mustache, out of the past, can only live in a comparatively small range of environments. (different dentition though:)

When I was for a while a schoolboy at the École Nationale, Maisons-Alfort Paris, my name was corrupted or 'Frenchified', that corresponds to my given name. (That high school is now used for veterinarians - appropriate I guess)

When I heard about bb & joined I had no idea what sort of organization it was, so, as an IT person, I ran up an identity using both given and surname from that time, and now although I'm satisfied with their security there is no real need to change.

I understand about meds, I've been on various things since '77. Some woeful, some ineffectual. The only ones that really do anything are the ones that directly combat the physical symptoms, and they are getting quite reasonable.

If you don't mind I think I'll mention my first wife. She was a life-long severe asthmatic, and although a nursing sister struggled from day to day, with many visits to casualty (ironically where she worked when well) as a patient.

A new drug came on the market, it helped the asthma a lot, but was a time bomb in the long term. She took it knowing this. Eventually, after a full life it gradually degraded her systems, heart, bones, diabetes, sight. It killed her - my mind is hazy but I think she was 47.

​She, and I agreed, thought it worth it. At any time in the preceding years she could have been taken by a bad attack if she had not chosen to take the drug. It gave her the abilities normal people had, at least for 25 odd years.

Oh dear - you have gotten me talking - there I'm blaming you for what I do:)

Have a hug

Croix

[Croix]

P.S. Dear Wednesday, I hope I didn't distress you talking about my wife. We were happy and were together. My apologies if it did, mentioning medications brought it all back. -C

[Wednesday]

Dear Croix,

No, no not at all, you haven't done anything at all to distress me. Some days I am just slow. I am touched that you shared your story with me. What a brave woman, I am so please that you were happy together. We never know what life is going to throw at us. I am sorry that your lovely wife's life was cut short it must have been horrible watching her slip away from you. Do I gather that you remarried?

My goodness a school boy in France how very global you are. What was it like going to school in France and I assume learning all your subjects in a foreign language? I wont be at all be surprised if you tell me you are fluent in a number of languages:)

So Walrus, you have me curious, why is it that you can only live in certain environments? It sounds as tho you are limited in what you can do or is that where you can go? Sorry if I am asking to much.

Hugs, xx

[Croix]

Dear Wednesday~

I'm relieved, I thought talking of mediation's' drawbacks might have been insensitive. Yes it was horrible, the last 9 months in hospital. She died the day after Martin Bryant killed all those people at Port Arthur. I sat up in a recliner chair in her room all night until she passed away. No I'm not going to get teary - blast.

She looked after me - I was impossible when invalided out of the police, I held it a favor from the fates to be there for her in return.

On a happier note I re-married very quickly to a lady who was in much the same situation. 20 years later we are still in love. The only thing that puzzles me is that she remains 28 years of age. When I say this to people they give me funny looks. ( I've been meaning to ask her about it ).

School in France was by and large a pain, as soulment barbarien ( an uncouth ) and with my language not really good enough for most subjects I floundered - though I did do pretty well in English if I say so myself.

I became used to soup bowls of café au lait for breakfast, drinking water only from green bottles and chocolate sandwiches. I was too young to appreciate Paris.

The street markets were fantastic, full of WWII surplus and shooting galleries, with les gaufres au miel ( waffles in honey ). Everyone spoke too quickly for me and I was always saying lentement lentement ( slowly slowly ).

Now I've forgotten all the language - the same as my smattering of Welsh. Use it or lose it I'm afraid.

As for the restricted environments, I'm afraid that's a little more down-to-earth. I was never cured, just placed in a holding pattern. I can do voluntary work well, but cannot take the stress of paid employment. Similar restrictions to some of life's other interactions apply. My stress-based physical ailments do try to limit movement away from home at times. I also have a degenerative spinal condition, though it is not that bad, I use a stick.

I cope. There are and have been many things that give me satisfaction and enjoyment.

Do I remember you saying you are, or had been an editor? If so what did you edit and why? Anything I might have seen or heard, or know of? You aren't a government censor are you? - Shudder - they say they're merely editors.

Have a hug (provisional on not being a government censor)

Croix