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Forums / Long term support over the journey / Feeling down due to fatigue & undiagnosed health issues

Topic: Feeling down due to fatigue & undiagnosed health issues

  1. Shelll
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    7359 posts
    30 September 2021

    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

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  2. Elizabeth CP
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    30 September 2021 in reply to Shelll
    Thanks for your thoughts. I am waiting to find out whether my husband will be sent home tonight so I need to wait up for the hospital to call. It is really scary.
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  3. demonblaster
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    1 October 2021 in reply to Elizabeth CP

    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 😊⚘

  4. Shelll
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    1 October 2021 in reply to Elizabeth CP

    How is your dear hubby now?

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  5. Elizabeth CP
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    1 October 2021 in reply to Shelll
    My hsb was discharged at 130am this morning after lots of tests not showing anything significant. He was extremely cold. They double checked the thermometers they were using but they were working OK. They tried to get his temp back up to normal without success. I am exhausted after so little sleep. He is feeling better today. than yesterday but still needs to rest and recover. Tiredness is making me feel really down and struggling to do much.
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  6. Shelll
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    7359 posts
    1 October 2021 in reply to Elizabeth CP
    Are you able just to rest up some then Elizabeth
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  7. Shelll
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    1 October 2021 in reply to Elizabeth CP
    That is good hey, that you hubby is feeling better.
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  8. demonblaster
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    2 October 2021 in reply to Elizabeth CP

    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 ⚘

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  9. Elizabeth CP
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    3 November 2021 in reply to demonblaster
    Sorry for not replying sooner. I've been quite down and anxious. Worrying about my hsb and the covid situation. I don8have any resilien e so little things really affect me. I struggle with motivation as things seem pointless. My hsb has recovered from the chest infection but has had a few bad episodes of coughing choking etc and difficulty eating or drinking. That really worries me. The onging stress is leaving me exhausted. Even doing thing I normally enjoy seem an effort and leave me exhausted instead of refreshed. The recent hot weather has been difficult to cope with. I need to go to the shops but worry about if it is safe or how I'll cope. This is not normal for me. I'm scared of encountering crowds of people which didn't used to be an issue. I just wish I could feel better.
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  10. quirkywords
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    quirkywords avatar
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    5 November 2021 in reply to Elizabeth CP

    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.

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  11. Elizabeth CP
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    5 November 2021 in reply to quirkywords
    Thank you Quirky. My psych is also pushing me to get respite. The problem is the effort of arranging it. I did have a short break during lockdown but the stress of organising it and worrying if Id get stopped by the police made it extremely stressful. Unfortunately my hsb became seriously ill just after I go back which undid all the good it did. I will try again in a month but we have too many appointments and things happening at the moment. He needs to be more stable before I can leave him without me. Even in hospital nurses expect me to look after him and tell them what he needs. They got upset when I had a break to get something to eat so the hospital staff had to look after him
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  12. demonblaster
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    5 November 2021 in reply to Elizabeth CP

    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 ☺

  13. Elizabeth CP
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    5 November 2021 in reply to demonblaster
    I miss being an OT. It could be stressful at times but lots of satisfaction. Entertaining the elderly was before my time. I worked a lot in rehab helping people learn ways to overcome the problems they encountered due to age illness or injury. Seeing the difference made inpeoples lives was great. Only the health professionals that work closely with hubby understand his condition because it is so rare
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  14. demonblaster
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    7 November 2021 in reply to Elizabeth CP

    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 ⚘

  15. Elizabeth CP
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    8 November 2021 in reply to demonblaster
    Thank you. I have read what you wrote and really appreciate your support and thoughtful advice. I will answer in more details later. Thank you Sorry I'm not up to write any more at the moment
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  16. demonblaster
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    9 November 2021 in reply to Elizabeth CP

    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.

  17. Bella001
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    39 posts
    12 November 2021 in reply to Elizabeth CP

    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.

    1 person found this helpful
  18. Elizabeth CP
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    19 November 2021 in reply to Bella001
    Thanks Bella and DB.Ihave not much to say as I feel tooexhausted to think
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  19. Doolhof
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    20 November 2021 in reply to Elizabeth CP

    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

  20. Elizabeth CP
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    26 November 2021 in reply to Doolhof

    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

  21. Shelll
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    7359 posts
    26 November 2021 in reply to Elizabeth CP

    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

  22. Elizabeth CP
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    27 November 2021 in reply to Shelll

    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.

  23. Shelll
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    27 November 2021 in reply to Elizabeth CP
    Oh Elizabeth, I really do wish I could help you. I can see you are struggling there. I have no other words, only that I care about you.

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