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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. Elizabeth CP
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    11 April 2021 in reply to Guest_1055
    Thanks Shell for your thoughtful suggestions. At the moment I'm too down to even try. Getting a message with a photo from my OS daughter just made me feel worse reminding me what I'm missing but when I can I will try your ideas.
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  2. Guest_1055
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    11 April 2021 in reply to Elizabeth CP
    I will virtually just sit and visit with you a while Elizabeth, if you will have me. No words are needed at all
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  3. Guest_1055
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    14 April 2021 in reply to Elizabeth CP

    You popped into my thoughts today Elizabeth. No need to reply... no pressure. But wanted you know you are thought of.

    Shell xx

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  4. Elizabeth CP
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    14 April 2021 in reply to Guest_1055

    Thanks Shell for your kind words. I have really appreciated your thoughtfulness as well as Demon blaster & Quirky. You each have a lovely caring attitude that helps.

    Sorry I'm not up to writing much I'm still very down & exhausted.

    1 person found this helpful
  5. mocha delight
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    14 April 2021 in reply to Elizabeth CP
    Hi Elizabeth glad to hear your still going despite everything 🤗 and I’ve been very down since Tuesday this week gone. Actually this is the worst I’ve been even since pre antidepressants so I kind of know where your coming through in a way.
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  6. demonblaster
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    17 April 2021 in reply to Elizabeth CP

    Hi dear Elizabeth and everyone 👋

    I really hope your lifes getting some light in it dear lady you've been having such a rough time poor soul 🤗 that's a gentle hug if you'd like it.

    Hoping your wrist is mending hun too and that hubby is back to normal.

    I know how it can get feeling so low lovey it's so hard in those times isn't it. Dig deep Elizabeth with belief you can pull out of this. What makes us feel worse is accepting down comments that make us sink lower. We tend to go with our thoughts.

    By challenging and talking to the negatives can help us realize they're not how we want to feel. It allows us to think more on the subject which we need rather than only hearing the one thought.

    I'm so sorry you're feeling so bad. Not at all a good way to be poor lady. Please don't worry about replying unless you're wanting too. It's so hard in lows I know.

    You'll get through this darl because you're a survivor and you do have the inner strength to draw on.

    Much care and friendship 👋🕊👀💗⚘

  7. Elizabeth CP
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    29 April 2021 in reply to demonblaster

    Sorry I haven't replied for so long. Things have been up & down. I went away for a couple of days last week which gave me a break and a chance to get some needed rest. While away I visited my parents grave and cleared the grass encroaching on the plaque. It was nice to read what was written as it reminded me of things mum did and dad's plaque had a rose engraved because he loved growing roses and mum would tell us about him presenting her with beautiful corsages he made from his garden. He also carved a lovely rose on a jewellery box he made for me so the rose reminds me of his talent and thoughtfulness.

    Since returning things have been stressful. His NDIS plan review is coming up so I've had a few meetings discussing that. Tuesday was very stressful & my hand/ wrist was very sore so I couldn't sleep. I'm overreacting to the smallest upset

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  8. demonblaster
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    30 April 2021 in reply to Elizabeth CP

    Hi Elizabeth⚘and all other good people 😊

    Good seeing you Elizabeth ☺ and honestly there's no rush to reply just when you're up to.

    Sounds like you had a good break which is so much needed in hard times like you're having. Glad you got some rest too.

    How beautiful those memories of your Mum and Dad and the Roses. So lovely hearing that.

    Sounds like it's all pretty full on still hun. The NDIS part you'll be looking back on in no time. There's a fair bit involved isn't there.

    Ouch your wrist still giving you some grief poor thing. We use our arms and hands all the time as you'd well know. I think we realize how much we use and knock body parts in injury.

    You're under high stress anxiety and depression I think the three Elizabeth that are all going to make you upset at a lot of things especially when they don't run smoothly dear lady it's frustrating and very hard.

    Sounds like such a simple thing but it really does help to keep at regular intervals deep breathing hun. Focus on that only. The energy used to make you feel down if you can draw on that to pull you through good lady by working at not giving any negative thinking further thought. Also believing as we do and know that you can get through these hard times dear lady it's such hard yakka. Pffttt no one needs it hun.

    Take good care darl been thinking and hoping things are better for you.

    Absolutely no pressure or rush to reply ⚘💗

  9. Elizabeth CP
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    29 June 2021 in reply to demonblaster

    Sorry I haven't replied for ages. Things have continued to be stressful. Today I saw a specialist who confirmed what I believed was wrong with my hand. I have been frustrated because my appointments changed to telehealth due to the lockdown but still haven't changed back to in person. This has been ineffective and I felt her advice was no longer helpful as my hand/thumb changed. The doctor confirmed what I believed and he showed me his notes which will be seen by the hand therapist which states that the treatments she was giving me are no longer appropriate. Hopefully I can get the right exercises which I've been asking for but told I shouldn't do.

    I was worried that people would think I was being difficult or making things up but having the doctor tell me the diagnosis and what caused the problem was a relief. It is likely to take a long time to recover but at least there is a proper diagnosis by a specialist rather than assumptions which I felt were incorrect.

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  10. Doolhof
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    30 June 2021 in reply to Elizabeth CP

    Hi Elizabeth,

    Hopefully you are on the right track now and treatment/therapy/action can be taken to help you.

    At one stage, the physio was offering phone services, I didn't take them up on it as I know I am not good at helping myself. Thankfully we have been able to return to contact visits!

    It sounds like recovery is possible so that is a good thing. Wishing you well in this. Cheers from Dools

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  11. Elizabeth CP
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    30 June 2021 in reply to Doolhof

    I'm still stuck with telehealth hand therapy even though Vic has largely lifted restrictions. Don't know how effective it will be but at least she won't be giving me the wrong advice. In the meantime I will try to do whatever I think will help knowing I can't injure myself. It is not ideal but better than doing nothing.

    I'm feeling very tired and a bit stressed.

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  12. Sophie_M
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    30 June 2021 in reply to Elizabeth CP
    Hi Elizabeth CP,

    We are so sorry to hear that you are feeling tired and stressed. We understand that this must be very overwhelming, especially with all these issues with your hand and telehealth. Please know that you never have to go through this alone, and support is always here for you.

    If you would like to talk to someone about this, we would recommend that you get in contact with the Beyond Blue Support Service. They are available 24/7 by phone on 1300 22 4636 or on Webchat 1pm-12am AEST on our website: www.beyondblue.org.au/getsupport  One of our friendly counsellors will be able to talk through these feelings with you and can offer support, advice and referrals.

    We also strongly urge that in overwhelming moments you get in touch with our friends at Lifeline (13 11 14) or the Suicide Call Back Service (1300 659 467).

    We hope that you will find some comfort here on the forums. Please feel free to keep reaching out here on your thread whenever you feel up to it.
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  13. demonblaster
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    30 June 2021 in reply to Elizabeth CP

    Hi there dear Elizabeth Doolsy Sophie and readers ☺

    Wow it's a good thing knowing what's happening with our health isn't it. Easier to know what to do about it. Good news although it'll take some time that it'll heal. I'm sure you'll look after it and be very gentle. Frustrating eh but certainly worth it for recovery.

    I think stress comes on us with tiredness, possibly because we're not running on all batteries the body gives us a boost of ups that can be quite strong and difficult to control if we're struggling as you have been for quite some time now poor lady.

    I haven't been on the walking thread for ages but saw you'd posted so I'm guessing you've been getting some exercise which is great for mood sleep and tension release. I will get back there I've been slowly easing back to flat walking. It's good isn't it being out amongst it and being amongst nature or just out can be refreshing.

    I find it good to think of good memories which I try often to do. I know you've had some lovely walks at times or maybe a good TV show favourite food good book etc. By trying to feel it all over can be uplifting even if only for a few seconds it shifts our focus in a lighter way

    I hope Elizabeth you can get through this ok I know you've been struggling hard for a while, too long.

    Something we do in hard times esp when we're tired is follow negative thoughts which avalanche if we aren't aware of them. It uses a lot of energy which I think we can turn for our benefit by thinking of ways we can get through or improve the situation. I've had success getting mad at being so incredibly low I came out of it a bit at times enough to work from there.

    Any positive thoughts plans or as mentioned memories all give our minds reprieve from constant downward spiral. I like the gratitude idea too I find it tends to have a good grounding mindfulness.

    Do you like any type of music or have hobbies hun?

    I care as many here do about you Elizabeth.

    Hope you sleep well tonight nice and warm and wake feeling refreshed.

    See you later hun. You can and will rise above this. You're a survivor ☺⚘

  14. Doolhof
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    1 July 2021 in reply to Elizabeth CP

    Hi Elizabeth,

    I am sorry to read you are feeling tired and stressed. Sophie has suggested calling the support services. I have done that in the past and find it helps me, as does sharing with the amazing people here on this forum. This is a very caring community of people.

    Later today I am going to find a sheltered place in the garden and I am going to sit a while with my back to sun while I read.

    Is there something you can do to help for even a moment to relieve your stress a little ?

    Thinking of you from Dools

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  15. Elizabeth CP
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    6 August 2021 in reply to Doolhof
    I'm struggling with bad headaches and fatigue. The frequent lockdowns make it difficult to move forward as so many things that help get cancelled. My psych wants me to go away to get some respite from caring for my husband. I booked to go away this coming week but now that has to be cancelled. I managed to cope with the last LD by constantly reminding myself it would stop a longer one but this one before we really opened up has thrown me. I think I was already burnt out and stressed trying to cope with competing demands of caring for my husband which includes a number of specialist appointments to deal with serious complications of his condition. On top of this I'm dealing with ongoing pain and difficulty using my left hand which makes even simple things difficult. Sorry I'm venting but don't have the mental energy to explain myself properly
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  16. demonblaster
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    7 August 2021 in reply to Elizabeth CP

    Hi there dear Elizabeth and readers ☺

    Ah darls you're really doin the hard yards atm aren't you. I'm sorry hearing your hands still giving you grief poor thing.

    Hoping the LD won't be for too much longer then you can have your well deserved break. Poor lady with so much going on.

    Sometimes with bad headaches I get relief massaging the neck deeply. I realise your other hand won't be able to. I wonder could a heat pack help to lesson the tension in your neck.

    I'm very sorry you're struggling so much Elizabeth.

    Hope at least it's a nice sunny day there giving some much needed light in your life.

    No need to be sorry you did well saying how it is.

    Care support and a warm hug 🤗 if you're a hugger ☺

    💗

  17. Elizabeth CP
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    10 August 2021 in reply to demonblaster
    I feel like giving up. Life is no longer worth living. I have no hope of changing anything.
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  18. Sophie_M
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    10 August 2021 in reply to Elizabeth CP
    Hi ElizabethCP, 

    We are so sorry to hear that you are feeling so low right now, it sounds like there must be a lot going on in your life. We hope that you can see how much courage it takes to post how you are feeling and to seek support from this community, this is such a brave act and it shows that you have a lot of strength. 

    We are concerned about you and want to encrouage you to check-in by giving us a call on 1300 22 4636, our team are here for you 24/7 to talk through what is happening in your life and to support you to find help in the community. We are here for you, you don't have to go through this alone. You can also call our friends at Lifelin 13 11 14 if you prefer. They are also kind, understanding and supportive. 

    We think that it could be really helpful as well to speak to a GP or other memebr of your treatment team about these feelings. It is ok not to be ok, but these supports can be really helpful when feeling like you do. 

    If you ever feel unsafe, it is important to see this as an emergenecy and to call 000. 

    Thankyou again for sharing how you are feeling and for reaching our for support. You never know who might see your post and feel less alone in their own experience. We hope that you can feel comfortable to call us, or another support in your life. You don't have to go through this alone. 

    Kind regards,
    Sophie M
    1 person found this helpful
  19. Guest_1055
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    10 August 2021 in reply to Elizabeth CP

    Oh Elizabeth I am ever so sorry. My heart goes out to you. Wish I could help you.

    Would it help you if I reminded you of the influence you have given to all your little grand children. You have spoken of them a lot. The love you have given them and have for them comes across in your posts. And it's you, the person you that has given this. The love from a grandparent (you) is special.

    And you always come across as having much loyalty and care for your husband. Two qualities that I admire. Please don't lose heart. You are truly beautiful. And also adventurous. You have passed that adventure spirit in to your children lives and into the lives of all your little grandchildren.

    And also feelings as painful as they can be sometimes lie to us.

    Much care to you Elizabeth

    Shelley xx

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  20. demonblaster
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    10 August 2021 in reply to Elizabeth CP

    Hey there dear Elizabeth ☺

    It's really hard where you're at you poor love I do know how it feels to be that deep in depression making us feel that things won't change. They can and do often dear Elizabeth which is near impossible to believe right now. I know lovey.

    Atm the best thing is not to accept and believe everything depression tells us. With time comes change

    I'm so sorry so much is happening in your life making you feel like this you dear lady.

    Hold on darlin. You're not alone. We gotcha 🤗🤝

    💗

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  21. Guest_1055
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    12 August 2021 in reply to Elizabeth CP
    Thinking of you Elizabeth. Know that you are cared about.
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  22. Elizabeth CP
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    12 August 2021 in reply to Guest_1055
    Thank you DB and Shell, I really appreciate your caring words. I needed them as I feel so disconnected wit everyone. Sorry I can't think what else to say
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  23. Guest_1055
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    12 August 2021 in reply to Elizabeth CP

    Ah it's ok Elizabeth you need not say anything. All cool.

    Maybe you have been out in your garden looking at the camellias. I really like light pink ones myself. Or maybe you have been looking through old photos of all the beautiful views from all yours and your families hikes over the years. Or maybe photos of smiling faces of all your family. Think you may have only written about grandsons. So I now wonder if you have sweet little granddaughters as well.

    It is quite pleasantly sunny here where I am. Maybe it is the same where you are.

    Hey did I ever tell you, I lived in England for 8 months? I know you aware of many areas over there. So many beautiful and green places to walk. And not so green. Such a place I remember was a beach that had no sand only pepples and rocks. Maybe it was Blackpool. Perhaps you went there.

    Hey are you able to deep breathe for a while. Not focus on anything else but the beauty around you. Whether inside your place or outside. No striving to change things at the moment. Just simply be. So nice and gentle and calm like.

    And not sure if this is any help. It just popped into my mind then. There are things and circumstances in our lives that are out of our control. Have to let them go, it's too overwhelming and heavy to carry that in our hearts.

    Hope you can find some beautiful green mountains to look at, whether in your memory, photos or somewhere else. Thinking that may be your "happy place" or in the presence of your little grandchildren may be such a place.

    Just leaving some flowers here for you. English type ones. Very pretty. Smells heavenly....

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  24. Elizabeth CP
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    12 August 2021 in reply to Guest_1055

    What a beautiful post. I haven't been doing any of the things you mentioned. I see the camillias but not taking time to really look. Last week we had a couple of appointments with specialists which were quite emotionally draining even though the doctors were really good. My husband will be getting some major surgery as soon as it can be arranged. While the results will hopefully be really helpful I am concerned about the process. He is likely to be very unwell after and have a long recovery which I will have to manage. Beforehand we need to prepare as he is likely not to be able to talk for some time after surgery. This is adding to my stress. On top of this is the ongoing fatigue as I haven't had a break from my caring role for such a long time with the lockdowns & restrictions making that impossible to arrange. My psych has been telling me I need to arrange regular breaks and today he said without a decent break of several weeks minimum I'm not going to be able to function. I am finding it harder to manage even simple things and I am overreacting to things.

    Today was dry for a change. There are many English beaches with pebbles rather than sand. I think I went to Blackpool as a young child but never went back there. I preferred spending time in the national parks, some of the historical towns such as York and visiting relatives and the places I remembered as a child.

    I only have 1 grandaughter in Australia and don't see her much particularly with the restrictions stopping us from going into regional Vic. My son who lives nearby has 3 boys so I see them the most and my daughter has 4 boys who I used to see often before the lockdowns making it so difficult. I have 2 English grandaughters.

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  25. demonblaster
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    13 August 2021 in reply to Elizabeth CP

    Good hearing from you Elizabeth you've been and are quite often on my mind.

    Hi Shelly and readers btw 😊

    Wow there's some encouraging reason for hope with potential improvement to your hubbys situation. I certainly understand there's a lot of reason to feel anxious or concerned about after. Woo not being able to communicate would be the pits. I wonder could he use a keyboard or writing, maybe a white board to wipe stuff off as you both go.

    Something I try to be aware of that helps when I remember dear Elizabeth with depression is hear the thought which we really have no choice but the important part is to try to steer our reaction.

    If we say that makes us feel bad we'll feel it.

    If we say ok ...what can I do about it we allow room for more constructive thought.

    Often there are other ways but depression has us only focusing on negatives.

    Was thinking a couple of distraction techniques can give some reprieve.

    Picture in your mind say a Camellia or a flower you like.

    • See it.
    • Feel it
    • Smell it
    • Look at the Colour
    • Size
    • Observe it
    • Enjoy it.

    Another is pick a letter from the alphabet and focus on on positives. Allow your mind to wander as long as it's an up or neutral.

    Eg. P...

    • Purple
    • Pink
    • Prey
    • People...thoughts to good people...your sister etc
    • Pancake...yum...Golden Syrup
    • Pineapple....upside down pudding
    • Peach...juicy
    • Pumpkin...scones
    • Pyramids

    It won't take the problems away but it does give your mind a positive break. As we know depression makes us hyperfocus on pain blocking light. Positive distraction gives us some shards of light.

    Elizabeth can respite be arranged for someone to come to the house.

    Shells you do great threads/posts 🤗🤗 there's an extra warm caring hug for you both.

    Hope you're managing at least some quality sleep hun.

    See you when you're up to it ☺ no hurry just know you're cared about appreciared and we're listening ⚘

    1 person found this helpful
  26. Elizabeth CP
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    9 September 2021 in reply to demonblaster

    Sorry I tried to answer your post a couple of times but something went wrong and I didn't have time to redo the posts.

    We were told they wanted to do the surgery ASAP but we haven't heard anything since a phone call from a doctor doing a pre admission check up. I think the lockdown and growing outbreak here has messed things up. We are still trying to prepare & practice using communication cards etc. My hsb is blind so writing isn't reliable. It is too hard to read as he can't see what he is doing. A week after the specialist appointment my hsb had emergency surgery after a previous surgery burst. That was quite stressful and left him unwell for some time.

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  27. demonblaster
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    12 September 2021 in reply to Elizabeth CP

    Hi dear Elizabeth ⚘ and readers ☺

    Just popping in to let you know I'll bbl (be back later) to reply properly and have read your post.

    I so hope there's some good things happening for you in such hard times.

    Care and often thoughts wondering how you're going.

    Please don't worry if it takes time replying I know you do when you can.

    Be safe hun ⚘

  28. Elizabeth CP
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    27 September 2021 in reply to demonblaster

    Thanks DB

    I was feeling much better earlier today but suddenly slumped badly. I overreacted to something my hsb said and left the house for a short while. Came back feeling guilty and annoyed. I think the ongoing pain combined with the Covid situation is making me stressed. I worry about what will happen as cases keep rising and hospital admissions increase. This means I can no longer rely on being able to get my hsb treated in hospital if he get sick. He has been coughing and choking quite a bit and needed asthma meds to breath properly. This has settled but I'm constantly worried about when the next time occurs and he becomes seriously ill and I can't take him to hospital. Sorry my mind seems to be focusing on the negatives and worrying too much

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  29. demonblaster
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    28 September 2021 in reply to Elizabeth CP

    Hi Elizabeth and all ☺

    Dear lady I'm so glad even if only for a short time you felt a lot better.
    Hope that's a start even in small patches of a taste of better to come.

    It'd be hard caring which clearly you do especially your partner. Seeing him in distress the poor man and with difficulties communicating on top would be so much harder again for you both.

    You may already but in case not you both might benefit from an OT (occupational therapist) who maybe could help with some form of communication.
    There might be devices around that can assist with this. I'm unsure whats around atm.

    Wondering if brailles raised letters some pre written cards for bathroom/ drink etc could help.

    I hope poor hubbys recovering well from the emergency surgery.
    He's in good hands with you reckon.

    Stress It's so hard to cope with.
    I know good sleep makes an enormous difference which I guess for you doesn't come easily or enough adds to it no end.

    I read recently if I haven't misunderstood you had some quality time in your garden. Good to hear ☺
    Flowers/nature hold so much beauty. The colour shapes perfume they're so lovely. All unique

    Certainly you have good reason for concern with the hospitals and covid.
    I'm guessing anxieties throwing in extra worry there too.
    I'm finding a little relief with that by
    telling myself that if/when something happens I'll have to deal at the time. Worrying nows using up too much energy and pulls us down more. Although we do need to explore concerns which can then lead to ways of working around them.
    Wondering if talking to your Dr about your concerns re hospital might ease your mind potentially with solutions.

    Your husband if need be in the future hoping not of course would be a priority so they'd look after him the best they can.

    Sounds like your hands still giving you serious grief too. Pains so hard to live with

    I know you appreciate nature darl.
    There's a couple of tall lovely palm trees across the Rd which have long slightly bent arms and the throngs I think they're called just drape gently at a slight curve.
    The long slender leaves stand out individually amongst several per arm allowing light through them.
    When there's a breeze they sway in such a soft elegant way ...they just flow. Magical.
    Beautiful

    Keep breathing gently and deeply dear Elizabeth it does help our bodies and mind.

    Thoughts and care always. Take care of yourself too huns 🤗 (hug)

    ⚘🌞🌿🕊











  30. Elizabeth CP
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    2498 posts
    28 September 2021 in reply to demonblaster

    Thanks DB. I worked as an OT before becoming a full time carer so I am aware of what is available. My hsb has an excellent speech pathologist who is prepared to think outside the box to find the best solutions. My hsb has difficulty speaking when tired or unwell as the muscles in his mouth are weak due to his condition and continuing to deteriorate so eventually he will be unable to speak, eat or drink. He is also totally blind so learning to use communication devices is challenging as he has to memorize where everything is. We have a communication device but it is likely to take at least a year to learn to use it effectively. I have been trying to program it to be as effective as possible. This takes a lot of time and mental energy. I have produced laminated cards with the help of the speech therapist and used raised paint so he can feel what is on the card. All of this requires daily practice so he can use thing effectively. Sorry this is probably too much info.

    When my hsb has been in hospital before I have to keep checking on him to ensure the staff are treating him correctly. His condition is extremely rare so nurses and doctors other than his specialists don't understand his needs. I have learnt over time what works and what doesn't. This has been learnt the hard way with my hsb nearly dying several times in hospital. We found out the standard hospital bed doesn't allow him to lie in a position which stops him choking on his saliva. He almost died 2 nights in a row on one hospital admission from this. There are other issues which I won't discuss. With Covid I won't be able to heck on him to ensure he's safe in hospital. I know this sound like I'm over the top but this is a real issue.

    We recently changed GPs because of the issues I had with my hand. I am not prepared to see that GP after the way she treated me and was quite nasty. The new GP doesn't know my hsb or his condition.

    1 person found this helpful

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