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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. demonblaster
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    27 February 2022 in reply to Elizabeth CP

    Hey Elizabeth thanks for being in touch ⚘

    It really does feel like that and because so much is going on and beingso exhausted is the absolute pits

    I've found when it's that bad it takes quite a while to regain strength. It'll come slowly hun the more you sleep each time gaining a little more

    You poor dear lady 🤗

    Good idea from Sophie hun save your energy and give them a call sounds like a good idea.

    It's ok just to post when you're up to it we understand.

    Look after yourself lovey and thanks you're very welcome ☺ dearly want to see you better.

    You'll get there you're a survivor ⚘

  2. Elizabeth CP
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    18 March 2022 in reply to demonblaster

    Sorry I haven't posted for a while. I ended up going to 3 different places one after another with a day home in between to catch up on washing and check on hsb. I started to feel better with the break. Even feeling up to some exercises and walks without feeling pressured. Mood was better while I was away and hsb noticed I seemed better when I returned. I believe this showed that the fatigue and burnout were huge factors in my ability to function rather than just feeling depressed reducing motivation. If it was just the depression pushing myself to do things which normally help would lift my mood whereas it made things worse. Instead resting helped motivation.

    Unfortunately still need more respite to recover. The last place I stayed was great. Large windows overlooking garden with views to mountains. Just looking out the windows at the view seemed to help me. We had discussion /presentations on topics relavent to the people staying there which were uplifting. The afternoon was time to rest ponder and have counselling which helped me. They helped me see what I need to change but I need a lot more time and help to really put things into place and get the rest I need to be able to apply what I need to do. Yesterday I was feeling good having some plans to try to move forward to get myself better physically and mentally. Last night everything came unstuck. I went out to a church activity but the room was too hot triggering bad feelings. I tried to keeep under control but the effort meant I couldn't interact with anyone and I felt very isolated. I arrived home to find my hsb sitting inthe house with all the windows closed hoding the heat in. The thought of trying to sleep in such hat tipped me over the edge so I ran out to the garage to escape in the car. I couldn't stop to speak to anyone too scared I would explode and do something I'd regret. It took ages before I could drive home. Today I feel exhausted and couldn't cook tea tonight as I was too wound up. I feel so upset tnat I have undone all I acheived while away.

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  3. demonblaster
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    19 March 2022 in reply to Elizabeth CP

    Dear Elizabeth ⚘ hi and to readers too ☺

    It was really good hearing there were some positives in your time away. I hope you'll be able to get more rest and be able to work on what you've learnt in time.

    That would've been very upsetting about the house being so hot. Sorry hearing it undid a lot as well. Elizabeth darl that might come back later when you're back in a routine hun. You were very upset which really does tend to push everything else aside. It's consuming isn't it. Fortunately that does eventually subside.

    I don't know the reasons for the house being like it was. I know some try to do same so not to let the hot air in. Think I prefer air coming in.

    The third place sounded so lovely with a gorgeous view by the sounds. Glad you had that and it'd be a lovely peaceful memory to call on too I hope hun ☺

    I think there's a great deal of healing in rest and especially sleep.

    Thanks for letting us know how you're going lovey. I wonder at times how it is for you. Remember though dear lady just when you're up to postings fine.

    Look after yourself as well won't you.

    Regards and care to you both ⚘

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  4. Elizabeth CP
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    3 April 2022 in reply to demonblaster

    Sorry I didn't reply sooner. I have been struggling to get back on track after the incident with the hot room. I am due to go back to the place for respite tomorrow which I desperately need. The last week has been difficult. Hsb had a choking episode Saturday night. Prior to that he was quite well. Normally his coughing is enough to clear the airways so he can recover. This time he was left with breathing problems and feeling something stuck in the airways. After a sleepless night he agreed to go to ED last Sun. He was sent home with medication to stop further infection. He started improving until Wed when he went downhill very fast. I got very little sleep all last week with the worry and him coughing and needing the bed on a steep slope so he could breathe. Thurs went back to ED and he was admitted to manage the multiple problems which presented due to breathing difficulty and not being able to get enough fluids or nutrition to sustain him.

    I feel so stressed and exhausted from lack of sleep and worrying about him. I don't know when hee'll come home so I can't plan for while I'm in respite. If I cancel carers and he's home we're in trouble if I don't cancel and he's still in hospital that's not fair on them. Instead of being able to have a break at respite I need to be on call to organise things depending on what happens. If I don't go to respite I don't know how I'll cope as I am at breaking point. Then I feel guilty because I'm not using my time effectively. I just feel totally hopeless with nowhere to go.

    On top of this I've been sent text messages saying he's covid +ve but the hospital say that was a clerical error yet according to DHHS I have to stay in isolation as a close contact until they fix the error but the hospital staff are asking me to come in to bring things my hsb needs. The negative feelings and confusion and feeeling overwhelmed are destroying me.

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  5. demonblaster
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    4 April 2022 in reply to Elizabeth CP

    Hi Elizabeth good to see you and no need to ever worry about not replying earlier. We get it and just want you to post when you feel up to it. You certainly have so much on your plate the last thing you need is feeling any sort of obligation to post.

    Must have been a good comfort for you both your dear hubby having a good spell for a while.

    Poor soul he's got a really hard frightening illness from what I've heard which would be so hard for you both.

    That's a tricky one re the respite nurses, you're a considerate thoughtful person. They'd understand your situation I sincerely hope and if they know youre in desperate need of respite as you are poor lady geez I feel for you but glad you have that opportunity this or similar situations might crop up at times for them which they can work around. For your sake in this instance easy to say but I'd try not to take that on board you have so much else to try to organise.

    Geez a relief covids not an issue must've been quite a shock.

    Elizabeth could someone else take hubbies things to the hospital or a courier maybe.

    Could an option be the hospital communicate with the home nurses.

    You possibly/probably know having worked in the medical field that social workers can make a lot happen, maybe if not already that could be an avenue to explore.

    Always here good lady in virtual spirit wishing the best always for you both.

    I really hope youre able to get the rest you desparately need to charge those batteries.

    Take care hun ☺

  6. Elizabeth CP
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    23 April 2022 in reply to demonblaster

    Thanks for your reply. I really appreciate your support.

    Hsb starting to improve but have had a lot of appointments following his discharge trying to manage his condition as best as we could. I am feeling exhausted and unmotivated. The stress has really affected me.I am just overwhelmed..

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  7. demonblaster
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    24 April 2022 in reply to Elizabeth CP

    You're very welcome Elizabeth i feel so sorry you're struggling so much. I was wondering and hoping you got some good rest with the recent break but it sounds like you need a lot more you poor thing.

    It's good hubbies showing some improvement that must be such a relief for you both. So hard for youse as you know eh 🤗

    I hope you're able to get some decent sleeps dear lady you both have so much going on.

    It's terribly hard feeling so depleted. That in time can change darl I really hope it does sooner than later.

    You're a good lady doing really hard yards.

    Hold on hun.

    Thanks for checking in ☺

    Care and thoughts⚘

  8. Elizabeth CP
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    26 May 2022 in reply to demonblaster
    I'm still struggling. My psych told me if I don't get a decent break soon I will have a total breakdown. I feel very close to it. It is such an effort to do simple things and small things send my spiralling down into a very bad place. I realise my only hope is to have a complete break to start to recuperate which my psych keeps telling me. Unfortunately achieving this feels impossible. I had arranged respite for this week but had to cancel because of appointments which seem never ending. I seem to try arranging things and then having to change to fit in with all the health professionals involved. I'm trying not to think about results of his upcoming surgery because it is too scary.I am at rock bottom
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  9. demonblaster
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    28 May 2022 in reply to Elizabeth CP

    Dear lady 🤗 this is a heartfelt warm hug

    How you're feeling and have been for such a long time is such a terrible way to be.

    My heart truly goes out to you both 💗

    I sincerely hope you're able to get the time you need to replenish through lack of a better word in the not too distant future.

    You're doing it so hard poor lady. You have a lot of stamina which for sure you're so depleted and desparately need that break. Seeing that you just keep pushing on says a great deal about you're dedication to your hubby which is geez how to say it ... you're an amazing lady.

    You're in my thoughts hun truth

    Every best wish and hope for you Elizabeth always ☺

  10. Elizabeth CP
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    28 May 2022 in reply to demonblaster
    My hsb went to hospital yesterday for the surgery but 5.30pm the nurse rang to say they were sending him home because the previous person's surgery went too long so there was no time left. Need to ring on Monday to see when they can reschedule. I can't see how I'm going to manage. I keep getting more and more things to do and constant juggling all the commitments. I can't keep going
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  11. Sophie_M
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    28 May 2022 in reply to Elizabeth CP
    Hi Elizabeth CP!
    My God that is frustrating! your workload clearly did not need that  It also leaves all those fears about hsb unresolved. We are so sorry for all this! I feels so stuck, and uncertain.
    Can you insert 30 minutes somewhere? Just to stop for a moment and breathe? Even just to stretch and reset?

    Remember, you cannot support anyone when you are utterly burned out, and from the comment 'I can't keep going' - we know that you know that. But perhaps, receiving permission to stop and breathe from this community will help that sit with you as a must do. And please, please try Elizabeth. Rest is essential!

    Please do not hesitate to reach out to us as always! whether by 1300 22 4636 or of course just texting on the webchat: 
    And as always, please keep us in the loop here.

    Regards,

    Sophie M.
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  12. Elizabeth CP
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    9 June 2022 in reply to Sophie_M

    Sorry I find it difficult to reply because I have so much on my mind I can't explain it. I do appreciate the replies. Just knowing someone cares enough to read and try to understand enough to reply is helpful.

    My hsb had the biopsy last Tuesday a week ago but we won't get the results for several weeks. No actual date. Mon to Wed was extremely stressful. On top of trying to find out the new date for the surgery NDIS contacted me to roll over his plan rather than review it. Trying to explain that his situation has changed and trying to understand what I needed to do while keeping to call as short as possible so I didn't miss calls from the hospital (Hospital staff had promised to ring me back as soon as possible) Then more calls to cancel appointments scheduled for the next couple of days once surgery was confirmed. I felt my head was spinning trying keep track of everything. Then Tuesday wed was stressful waiting to find out what was happening. He took ages in recovery and then there were other issues which needed to settle before he was deemed well enough to come home. This made t really hard to plan the rest of the week.

    This week he went to respite which was supposed to give me a break but I needed to fill out forms for the NDIS and carry out piles of other administrative tasks which have taken up a lot of time. The monday I had arranged for a carer to take my hsb to respite a I had an appointment which I couldn't cancel but the carer cancelled at the last minute so I had to make other arrangements. My son asked me to take my grandson to a sport competition on Tuesday which was my one day I had totally free to catch up on things as well as rest. I didn't feel able to say no. I hate sport and it was a long drive in terrible weather so it took most of the day. (Sport is linked to very negative feeling for me)

    saw a dietician for the first time on Mon It was extremely stressful and embarrassng having to admit my eating problems. I eat for comfort when stressed which has become a problem. I am ashamed of it so hide it from everyone including my hsb. The dietician was good and understood the problem was an emotional one so tried to come up with strategies to help Unfortunately knowing he is right and wants to help doesn't stop me feeling stressed about it and trying to follow his recommendations when I'm so stressed is making me feel worse. Similarly my phone session with my psych today was extremely stressful as I needed to discuss difficult issues.

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  13. demonblaster
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    10 June 2022 in reply to Elizabeth CP

    Hi Elizabeth Sophie and all ☺

    Yes it's near impossible I've found and still do posting when we're heads in turmoil. As you achieved and well too, I've found eventually which can take considerable time we get there. I think although it surfaces what's going on it can be therapeutic writing it down also opening possibilities to help.

    I heard somewhere here that if not a sleep which of course you need but sounds so full on a lie down can replenish some energy without sleeping that can affect night sleep.

    Waiting for results can certainly be quite unnerving. Hopefully not too far off.

    How kind you were going to the sports day esp on your day off. That's a shame. I guess this doesn't gel with you hun but atm how you're feeling I suggest for you to look after yourself first. There'll be other times you might be up to going. You desparately need to care for yourself for now.

    I like what Sophies suggesting about taking some even if small time/s out each day for quiet time.

    You probably know the benefits of deep breathing. Circulating oxygen to a tense body not only helps relax, it takes focus off what's going on by concentrating on the task at hand and can reduce stress.

    I've been thinking of ? possibles that might ease your load. Could a community transport driver help with travel if you have that service handy. The cost is reasonable and petrol would be a cost anyway.

    Mentioned this before which could even if temporarily give your poor overloaded mind a little reprieve and help reduce stress. Wondering if you'd like to try some very simple meditation.

    • Sit comfy or lay down and breathe a few times deeply.
    • Focus on actually feeling your neck muscles relax.

    • Think about something relaxing you like or would like to do

    I know you like the garden. Picture a lovely flower or...

    • Watching water trickle...
    • Trees ...
    • Long grass gently blowing in the wind.. gently through your hair ...
    • Walking slowly
    • Or even simply your favourite colour

    • Allow your mind to be there. See & feel it. Keep it simple

    • When your mind wanders gently guide it back. Tell yourself you'll think about it later.

    This can be practised even if 5 minutes at a time.

    One I envisage is seeing the Sun and the cone of Golden flecks on the water. I loved seeing that once.

    Always wishing good for you both dear Elizabeth.

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