Hi Elizabeth, I just read a post you wrote somewhere else. You do sound so worried. I do wish I could say or do something so you wouldn't feel as you do.

Can you think of anything to get your thoughts and heart onto something else, even if it is for a short while.

You have mentioned that you have been to church before. Can you read through the psalms or listen to them somehow. Or find verses where God speaks about being anxious or worried.

Or maybe have a soak in your bath.

Just anything to calm yourself down some

Dear Elizabeth ⚘

Hi hun I feel sorry you have so much on your plate it would be a worry about hubby at anytime the poor man and you too you're a team. I hope he comes home tonight for peace of mind.

I completely get your concerns when he's in hospital geez that's awful bad luck having a rare condition.

Chances are you do anyway but I was wondering if talking to the num (nursing unit manager) if they're still called that could help or when your Dr is fully versed if he could contact them.

It's a lot to go through eh lovey. Know you have many people here that care very much about your welfare and hubbys too.

That doesn't sound at all good the previous Dr talking how they did to you. No doubt would have been quite upsetting.

With so much going on dear lady I hope there's some good things going on in your life too that even momentarily give you some pleasure wether memories or something close b6 sparking good feelings that you certainly deserve.

Thoughts and care hun 😊⚘

How is your dear hubby now?

Hey Elizabeth Shelly and all ☺

Good hearing hubbys back home I imagine that'd be a relief for you.

Didn't sound great him being cold hope that's adjusted somehow wow.

Yeah not good you being so tired poor lady. Everythings so much harder isnt it.

As Shells said is there any way you can catch a nap hun.

As zany as it sounds but true is exercise I find walking even a short distance can bring on energy. Even at times just movements worked.

Care ⚘

Elizabeth

I think it is natural for you to worry as you have so much on your plate health wise. How is your husband.Is there any way you can get respite care or some help with the exhaustion.

Thinking of you.

Hi Elizabeth and everyone ☺

So much on hey. I'm so sorry hun your poor hubby and you have so much to deal with.

It sounds not at all fair or right about the nurses getting upset when you left for tea. That'd be the last thing either of you need. If memory serves your dear hubby has a rare illness. I wonder are the nurses versed with this condition. Thinking they may feel inadequate or a bit nervous not that that's helping you people at all

Maybe in your mind you can remember what you used to have pleasure with possibly it could spark something from deep and give you some peace for some time.

I imagine you might have been down that road of calling here or similar do you think tho it might help some shedding of pain. You poor lady being under so much stress. Terrible seeing people suffer isn't. Geez I feel for that poor man too really sounds rough what's going on

I've not a doubt you're giving your hubby the best care you can. You're a good lady looking out for him like you do. Yip understandable not wanting to leave for a rest till he's in better shape. Glad the chest infection cleared up too.

How did you enjoy being an OT Elizabeth. imagine that would be a fulfilling satisfying job. I liked what they did in my nursing yrs when I saw them mostly was then giving elderly some activity and change in their days. We did what we could sometimes dancing or singing but yeah looked like a good job as nursing was too.

I hope youse had some luck getting some form of communication for Mr Hubby It was so nice hearing this OT's an outside the square thinker. Very encouraging. Sounds like he's well suited to the job.

A dear friends giving me a cutting of a lovely Red flower about the size of a ping pong ball not round though its sorta flat and has a velvety look to it either that or I'm remebering wrong but the colours lovely. When I get the name again I'll let you know. You like the garden don't you. I'm not a green finger but by some miracle the plants are alive well just a little frazzled 😄

Ok hun you're definately not alone here I just wish things could be easier for you both.

Care thoughts and well wishes good lady and hubby ☺

⚘

Hi darl and everyone ☺

It sounds like you have some really good memories of a very rewarding job. Good on you for what you did and the fact that you enjoyed it so much tells me you would have been good at what you did.
You made a positive difference in peoples lives and still do you care for your husband and have really good input here. I always like reading your posts. Truth.

I nursed a few mths in a rehab unit and very much enjoyed it in a different role to yours with similarities though like teaching the use of various aids and ways to make life easier for people.
It was nice as you felt too being a part of seeing good change for people in hard times.

I like the varied aids out there to assist which no doubt are improved and better now days with technology.
Love the minds of inventors.

I imagine it'd be a great comfort that some of the health professionals have understanding of your hubbys condition.

Elizabeth hun power to you by the sounds you've had a go at doing things you once had pleasure from.
Gently if you don't mind can I urge you not to give up on those things if that's happening because apart from temporary distraction... that spark potentially could return which may not happen if you're not doing the things you once enjoyed poor soul.

One of the hardest and glad to say I'm realising doable things is to slowly... just baby steps is enough for now till you're ready for more at your own pace push through not wanting to.

Especially depression including most mh problems I'd say saps energy.
Sleep deprivation I thinks up there if not the main cause along with poor diet that often go hand in hand. Not saying diet about you lovey just generally speaking.

We know how harshly it affects us mentally/physically.
I've learnt from experience including yesterday when it feels like we have nothing in the tank even in deep exhaustion there's a tinsy bit to draw on. (Not in all cases no doubt)

Movement can draw on some & doesn't have to be intense.
Once walking just from one room to another helped which also gave distraction without at the time being aware I was looking around at other things on the way and being somewhere else created some stimulation that gave a slight edge in deep depression as well.

I hope for you so much that something can help you.

You're a good lady and doing the best you can in very hard circumstances.

Thoughts and care for both of you ⚘

Thanks Elizabeth that's completely understandable and quite ok.

Please don't feel any pressure what so ever just when you're up to it.

Hope today gives you even slithers of light giving your mind some reprieve.

⚘

Hi Elizabeth,

I hope you dont mind me posting here and i havent read through everything, im so sorry for that. Your thread title caught my attention though and then reading your first post as well. I can relate to what you are going through. i have also had to undergo alot of tests too. i thankfully have a diagnosis but its incurable and expensive to treat. i also feel really guilty over complaining about it too but the health conditions make me quite stressed and feel down too. i know how it takes the toll on mental wellbeing thats for sure.

Im sorry i dont really have anything much to say but i do hope that you might be feeling abit better today.

Hi Elizabeth,

Just dropping by to say HI and to let you know I am thinking of you and am so sorry for all you and your husband are experiencing.

May you find some thigs to be thankful for today amongst the hardships of life.

Regards form Dools

Sorry I'm not replying properly but I really appreciate each of your replies. Knowing people care and try to understand and help/ give advice is really helpful.

We have had so many doctors appointments over the last few weeks wit different specialists and my hsb GP. % doctors appointments in less than 2 weeks apart from other health professionals like speech therapists. Each appointment has been effective with the doctors really understanding the issues we are facing and trying to help. Unfortunately I am finding them stressful because we are having to focus on all the problems my hsb is facing and I need to explain what is happening so I'm focusing heavily on the negative. Necessary toget the help needed but not helpful for my mood. My hsb was supposed to have a test on Mon which I was concerned about. I tried to get as much advice as possible to carry out the prep and follow up as safely as possible. We then saw one of his specialists (we had tried to see him earlier but something went wrong with the appointment) As soon as we mentioned the test my hsb was having he told us it was too dangerous which confirmed my worst fears. This specialist knows my hsb well. He wants him admitted to hospital as soon as possible for a barrage of tests following by the test he thought was dangerous along with another procedure he needs. It will be a lot better in that the staff should know my hsb history and can minimise risks and treat problems. The proposed hospital is a big city hospital with ICU etc so can manage serious complications.

Instead of feeling relieved at the plan which I agree is best I felt stressed and depressed. The only explainaton for my reactio is that it just confirms how bad my hsb is. It also means we have no control as we are at the mercy of public hospitals and when they can get him in. He is still waiting for a different surgery which was supposed to be done in June July but delayed due to covid outbreak.Today was another specialist who also wants so other tests for another issue which is really impacting my hsb. I feel as though I can't plan anything as I don't know when any of these tests procedures etc will happen and how he will recover. The constant stress is too much

Hi dear Elizabeth,

Such a loving wife you are. I read your post and I am thinking if you.

Just wondering would all these tests bring more of a quality to your husbands life. I know he has a rare condition. Just wondering is all. No pressure to answer if you don't want to though.

Much care to you Elizabeth

These tests and surgeries are really important. One surgery he has been asking for help for several years so when he finally saw the surgeon in July he was very happy to be offered the chance of surgery to hopefully address some of the issues which had really bothered him for so long. The Covid outbreak meant that surgery was postponed. Still don't know when it will happen. Another specialist has been seeing him nearly 10 yrs and has arranged many tests and procedures and surgeries to manage his condition. The problems he deals with are potentially life threatening and comp;ications have led to a number of long hospital admissions. Ongoing deteriration has put my hsb at risk of serious problems and means I live in constant fear of problems. Unfortunately there isn't a simple solution hence the need for all the tests to ensure the right treatment is given. A different specialis we spoke to on Friday was to discuss another complication which is causing my hsb a lot of distress and leaving him constantly exhausted. Unfortunately before a solution can n

be found he needs more tests to find out the cause. Apart from that some routine tests by the GP showed up a problem which requres further tests to rule out a serious problem but my hsb;s condition make the test much more risky hence his specialist has asked for it to be done in a tetiary hospital in case of complications.

In answer to your question these tests are important to hopeful max hsb quality of life but of course nothing is guaranteed and the process is VERY stressful.

The ongoing stress of caring, dealling with covid and restrictions , and the ongoing pain in my hand which has not been treated properly because of the restrictions in hospital /health care due to covid. This stress has really affected my MH so I no longer function how I would normally. I overreact to minor things. This is affecting my ability to care for my hsb properly.I asked my psych the other day what he thought and he agreed that he had never known me as bad as I am lately. Before I cold have bad periods but get myself back on track but this year I just keep getting worse and don.t have the fight to get back on track. It feels hopeless.

Hi dear Elizabeth and everyone ☺

Gee you guys have such hard times I feel very sorry for you both having so much to deal with.

It's no wonder you're feeling at the end of your tether you poor lady. Clearly you do your best for your poor hubby. It must be very frustrating with so many delays tests and of course a constant worry you poor good soul.

It's ok honestly Elizabeth take your time with replies. We get it hun. It's hard to talk about what's happening at times. Just when and if you're up to ☺

Here's a little pretty colourful mind distraction for some pump from good chemicals.

Picture a section of a garden bursting with colourful different flowers sizes and shapes..
See an orange one...take your time noticing everything about it..
Yellow
Red
Purple
Blue
White
Pink

And around the edges some gorgeous soft Green grass with tiny Violet orchid type shapes ...

Candles... the small flames gently swaying with a cool refreshing breeze washing over your face and through your hair...carrying stress away....bringing light into your soul...Breathe deeply and admire this amazing burst of beauty...pop that into your memory darl...

Dear lady you're a very strong person doing as much as you can in very hard circumstances.

Only the best wishes for you and your dear hubby ⚘

Thank you Shell & DB, I really appreciate your thoughtfulness.

I'm struggling with extreme tiredness. My psych wants me to take ADs but I'm sure I've tried the ones he prescribed but I don't have anything written to confirm. I'm petrified of trying them as I've had such bad reactions in the past with each one I tried. Although I've tried doing some things which normally help lift me I'm just so tired that I feel even tireder after instead of better. I don't know how to keep going.

Dear Elizabeth~

It's ages since I've caught up with you and am sad to see you have so much on your plate.

I think DB may have the right idea at the moment, talking of the problems is a way of reminding you of each and every one -who needs it.

Before I go on I'll mention if you doctor does not know what you have been prescribed maybe like me your pharmacy keeps records going all the way back since they became computerized, I have in the past asked mine if I've used a particular med and they have been able to answer -don't know if that fits your circumstances.

Anyway - Trying to imagine something (or do something) that is way out and even relaxing, or at least attention grabbing in a nice way can give just a squeak of mental respite.

I may have written this to you before, no harm in picturing it again if you can - or something of your own of course. Try to relax with eyes closed and picture ...

At bad times sometimes I put my mind in another place, one from my childhood in Wales, standing on a plateau over a cliff on the side of a mountain, with sheep cropped turf all around, granite boulders peeking though the green.

On three sides is grey seas, whitecaps and blowing spume, windswept and with squalls of rain forming darker patches from the clouds. I can see those squalls coming. They hit me as the wind pushes me around. At the same time a gull wiht wings half folded whizzes past hurled by the wind.

The rain is like the tears that wash away pain. I'm snug -even with a streaming face - as my clothes are dry and warm. It is not a bad feeling, I'm closer to the earth, away from civilization, and the rain and wind remind me. The seas hint of bigger vistas.

Croix

Thank you DB &Croix. My mind is so full of things to do. If I try to take a break my mind still goes back to the things which need doing. I was trying to do Christmas decs hoping that would take my mind off things but need to clean the decking before I can set up the tree. It is too hard after. Worked for 10min then was too tired to keep going. Tried ahain but got cobweb in my eye and had to stop. Noone at home to help check my eye as my hsb can't see. I don't know if I'm tired because I'm depressed or depressed. Before I felt better if I achieved something. Now I am too exhausted. Yesterday I had to ring around to find a GP to see my hsb because he was struggling too badly to wait for an appointment with normal GP. At least he got treated and fixed that acute problem. Yesterday was also spent with multiple phone calls to hospital to arrange for admission next week for multiple tests and procedures. I need to put together apile of info to send to assist the staff to look after hsb safely. I need to get my mind straight so I can do that effectively. It is too important to mess up. I enjoyed your description of Wales. My aunt married a Welshman and lived in Snowdonia. There is something special there. It is wild and rugged and beautiful.

Hi dear Elizabeth Croixy and everyone ☺

So much going on eh darl.

I think depression and sleep deprivation work together. Because we're worried anxious or depressed our minds are focusing on the causes in turn rising stress levels which makes for troubled and lack of sleep as you know.

Something that can help with stress is not thinking too much how we feel which sinks us more. Directing that focus on what can be done like what you were saying about needing to be able to concentrate on hubbies hospital needs.

Yes in hard times like this our mind does keep going back to the problems. What you can do is gently acknowledge it and tell yourself you'll think about it later. Repeat process 548 times. Annoying eh but each time even for a few seconds is a different mode of thought away from pain.

I very much hope it goes smoothly in hospital dear people and that some easier living results from hubbies stay. What an ordeal for you both.

Ouch that cobweb wouldn't have been good at all poor thing. If it happens again rinse it which you might have done and away from the nose side of the eye. Hope it's better hun struth.

Darls you did in exhaustion very well getting anything done. You achieved something that seemed like you couldn't. Well done. Ok if it was a small amount which means a bit less to do later.

Just wondering if the GP might know of somewhere that people volunteer help to people in need. Wether they could do some housework/ lawns cooking etc. I did some home visiting and people can shop too.

Depression makes it very difficult to see good or have pleasure. I suggest strongly dear soul don't stop trying or to be thinking of good memories or moments otherwise there's no chance of a spark like our dear Croixy gave about Wales. Great scene and it does sound really nice.

We just got a calendar today from the chemist with gorgeous world scenery. There's many countries that have lovely bright coloured houses. It's one of a few ways of seeing the worlds beauty.

Incidentally just a touch of trivia I find interesting. They use some cobwebs for healing wounds I've heard. Reminded me when you had some in your eye. Bet that didn't feel healing though 😉

You're clearly a very diligent caring loyal soul Elizabeth. You're doing a great job good lady (hand on your shoulder ☺)

I really hope soon your poor exhausted body can give in to a lot of quality sleep.

Wishing you both the best outcomes with care and friendship ⚘