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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. Croix
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    10 April 2018 in reply to Elizabeth CP

    Dear Elizabeth~

    You are having a very stressful and worrying time, your plans for the birthday are derailed, your husband's condition an unknown plus simple fatigue has hit too.

    I think you did a marvelous job looking after your grandson and a trip to the park sounds as if it was quite a success. It will at least have got you out. It's a great feeling when they are well behaved.

    Motivation at present will be on the back-burner, how could it not be at the moment. Having no energy is not being lazy, it is the limitations of the body making themselves known in both body and mind.

    At the moment the enquiries about your husband will seem repetitive and a strain. I'm sure people are genuine in asking after you too, even if their main focus is on your husband. I don't think you realize what a main-stay to them all you are.

    Hang in there

    Croix

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  2. Doolhof
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    11 April 2018 in reply to Elizabeth CP

    Hi dear Elizabeth,

    Hopefully the Drs will come up with some answers soon. How would it go if you told people you are struggling when they ask you? I know I have done that! Some people actually stop, look at me and consider what I have said and than ask how they can help.

    It can be so easy for us to say "Oh I am fine thanks" when in fact we are nowhere near being "FINE".

    The trip to the park sounded like a great way to release some of the grand son's energy. Reminded me of when I worked in Outside School Hours Care. One of the girls took off out the centre and the boss told me to run after her. Me, a crook back and all trying to run down the street and catch up with a 12 year old!

    I don't think so! I did try. Then I yelled out to her, asked her if she could please stop because I was an old woman and could never catch up with her. She did stop, turned around, looked at me collapsed on the footpath and started laughing. We had a good chat and a slow walk back to the centre.

    Hey Elizabeth, I agree with everything that Croix has said. Hope you can take it easy on yourself dear precious lady!

    Cheers to you and hugs too if you would like some, from Dools

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  3. Elizabeth CP
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    11 April 2018 in reply to Doolhof
    Thank you Dools & Croix. It really helps having you listen & share your kind thoughtful words. I really like your story about the 12 year old girl. We do need to sometimes make a fool of ourselves admitting our weaknesses. I hate to think what my grandson will be like by the time he's 12. No one will keep up with him. He is only 6.
  4. white knight
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    11 April 2018 in reply to Elizabeth CP

    Hi Elizabeth

    I'm sorry to hear about hubby bein in hospital. I hope he is ok.

    I care about you.

    Tony WK

  5. Doolhof
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    11 April 2018 in reply to Elizabeth CP

    Hi Elizabeth,

    I was hoping to add a little humour to your day with my story!

    Having serious stuff happening around us can be tiring. I certainly don't want to minimise what you and your husband are going through, just adding a little light heartedness.

    Hopefully your Grandson is watching the Commonwealth Games, he may be encouraged to be an athlete of some kind. If he has all that energy, it may be great if it can be channelled into some kind of sport!

    All the best from Dools xxx

  6. Elizabeth CP
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    11 April 2018 in reply to Doolhof

    I doubt if my grandson sees the Commonwealth Games. There's no skiing or snowboarding so my son would never watch it!!!.My grandson rides his bike for several km. His dad has to ride to keep up.

    Thanks Dools & Tony, I appreciate your thoughts.& Dools humour!!!

    My husband is starting to improve. Still don't know what causes the pain but they suspect the breathing problems was aspiration pneumonia based on the symptoms. Unfortunately my son rang to say he was very unwell. I suggested he rang the CAT team for help but he rang back to say they want him to go to hospital & wanted me to babysit while his wife took him. I can't spend time with my husband & babysit. I feel bad for not helping but I can't do everything. They also want me to babysit next week while they move. The thought is making me really stressed. I believe the move will be bad for my son as he will be away from all his supports & last time he lived in that area he was unable to get work & ended up in and out of psych hospitals the whole time. He only improved after moving back close to friends & work opportunities.I don't know how to help him without putting myself & my husband at risk.

  7. quirkywords
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    13 April 2018 in reply to Elizabeth CP

    Elizabeth,

    I have been catching up with your thread and I feel for you as you have a lot to deal with. It is hard with adult children wanting to help but also having to look after yourself.

    I am thinking of you and your husband .

    Quirky

  8. Elizabeth CP
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    14 April 2018 in reply to quirkywords

    Thanks Quirky My husband came home yesterday but is still very weak & tired which means I have to really watch him to ensure we don't have a relapse. Knowing that he remains at risk of similar problems in the future & they could lead to him dying is scary. His condition is rarer so it is impossible to get accurate advice to help me manage him. I feel like I'm trying to guess what is best & then making suggestions to the doctors as they are also guessing a lot.

    It is good to have him home because it means he is better than he was but my mind keeps going over what if? what will happen next? Will he get back to normal What should I be doing to help. Am I doing too much or too little etc.

  9. Doolhof
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    14 April 2018 in reply to Elizabeth CP

    Dear Elizabeth,

    You have so much on our plate at the moment.

    Just want you to know I am thinking of you and your husband and really do wish I could send you some of your favourite flowers.

    I would also love to be able to send you a cook and cleaner so you can just sit with your husband and a child minder for your grandson, one with a lot of energy!

    I'd like to send an Angel to watch over you all, including your son.

    Hugs to you from Dools

  10. Elizabeth CP
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    14 April 2018 in reply to Doolhof

    Thank you Dools, My energetic grandson will be back at school next week so shouldn't need to babysit him. At least I only had him as he's fine on his own but a handful with his younger brother who goes to childcare. Together they egg each other on. I've got the main areas relatively clean & tidy & it seems more moivating to cook for two than on my own. Still need to be careful what I feed him. Need enough to give him energy but I have to be careful not to give him too much or the wrong food otherwise he could choke.

    My son took Friday off to loo after his son & he came around for a while to help with some gardening. Much appreciated as all the weeds & dead stuff from the heat looked so ugly & the soil has baked hard so it is hard to weed. It rained today so instead of cut flowers for my house I think I'll have a lovely flowering plant to fill up a bare space. Maybe a nice passionfruit to grown on the trellis which is now bare. Of course since yoy are sending it it will be automatically planted, watered & looked after so it will grow quickly to produce lovely flowers & fruit.

    The Angel can concentrate on my son & help him get the strength he needs to recover & then to stand up for himself so his needs are met so he can remain well.

    Thank you Dools for my plant & the angel It has been nice to imagine them both

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  11. Doolhof
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    15 April 2018 in reply to Elizabeth CP

    Hi Elizabeth,

    I'm pleased my imagery was of some help to you. Hope your husband is going okay, also hope your son gets all the help and support he needs and the strength o carry on regardless of how he feels.

    Hope the rain has been refreshing for the garden and somehow helps you feel cleansed as well. Our garden too has received a much needed soaking!

    Next week I will be staying with family so won't be on the forum. I will be thinking of you and your family, and everyone else here on the forum.

    Cheers to you from Dools

  12. Elizabeth CP
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    15 April 2018 in reply to Doolhof

    Thanks Dools, I hope your trip to family is pleasant & peaceful. I hope you find time for some nice walks. Today my husband wasn't too good so had to be extra careful with meals & medications. No point in giving him tablets if he can't get them down. He wasn't well enough for church so we listened to some church talks on my laptop & discussed them. One related a story about a person acting on a navy ship which was in trouble during a storm. He was asked to pray for the ship's safety. He prayed for guidance to know what he could do to help. He was inspired to speak to the captain to get more information then prayed again. He was then prompted to go out on deck to see for himself what was happening. He needed a rope tied to him to prevent him being washed overboard. He then prayed about what he'd noticed & asked the lord for guidance. The spirit told him to ask the captain to slow down the good engine because it was under too much strain. Not long after the storm subsided the good engine died so the ship limped to safety on the remaining damaged engine. If the engine had been left as it was it would have broke during the storm leaving the ship unable to be steered & kept safe.

    I thought this showed how I need to be better at praying for guidance to get through the trials we're having. On my own I don't have the strength or knowledge to know what to do. I just need to put that into practice!!!!

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  13. Elizabeth CP
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    16 April 2018 in reply to Elizabeth CP
    I feel like my life is on hold. I'm so focussed on helping my husband recover & being unable to plan ahead as I don't know what is in store for us. I need to have something to look forward to I
  14. Doolhof
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    17 April 2018 in reply to Elizabeth CP

    Dear Elizabeth,

    Thank you for sharing this powerful story. It can be hard to put God first in all things, but He understands how we are feeling and that at times we shut Him out even when we don't mean to.

    It is wonderful you were able to share that experience with your husband. I am so very sorry that his health is causing so many issues.

    I wish I had some words of wisdom for you Elizabeth. God has those!

    I'm heading off after lunch today and won't be back until Monday. I will be thinking of you and praying for you and your husband.

    Hugs to you from Dools

  15. Elizabeth CP
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    17 April 2018 in reply to Doolhof

    Thanks Dools & Hi to anyone else reading.

    Today I saw my psychologist. Visits have been less frequent than usual because of his other commitments. It was helpful to talk things over with someone who really understood what I was going through. He made a few suggestions for me to care for myself so I can cope with the stress I'm under but I need to work on my own thoughts to prioritise my own needs. I still need to learn how to balance my needs & my role as my husbands carer. This is complicated by the fact that his needs are changing. I am trying to work out how to prepare for the future when he becomes even more dependent on me. My psych wants me to move towards feeling comfortable have time away as respite because in the future that respite is going to be essential to keep going but I'm still struggling to do that withou feeling guilty.

  16. Elizabeth CP
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    23 April 2018 in reply to Elizabeth CP

    I am feeling very down today. My husband is slowly improving but still has a long way to go. I feel unable to plan anything as I don't know when my husband will be back to normal. There is also the rear that he will have similar episodes of illness more frequently limiting further what we can do. I don't cope when I have nothing to look forward to.

    I'm struggling because I haven't helped my son & DIL move. My husband's illness gave me a good excuse to use but it goes against my values. Last time I was at my son's house I helped clear up but my son was told off by his wife(over the phone) for letting me help. Other times I've helped she leaves everything for other people instead of doing anything herself so I find spending any time with her very stressful & difficult.. Today my daughter who lives overseas told me off for not helping. She is away from the situation so she isn't as aware of the issues. My daughters comments just exacerbated my guilt feelings.

  17. Croix
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    23 April 2018 in reply to Elizabeth CP

    Dear Elizabeth~

    Many people struggle wiht the idea of respite, even though it's presence makes the impossible possible. I'm sure it is no use telling you that nobody is a bottomless well of strength, care and giving, it's true nevertheless. We all need to come up for air and recharge.

    If your husband's need become greater over time that is more load for you, and respite becomes more and more necessary. You need time, space, enjoyment and peace in order to survive, let alone care for another. I suspect wiht that assured the future might not look so daunting.

    You overseas daughter has aired her opinions, which are at the very least thoughtless. I'm afraid if it had been me I'd have lost my temper, or at least talked very straight and to the point.

    Croix

  18. Elizabeth CP
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    23 April 2018 in reply to Croix

    Thank you Croix, I needed your words of support. My overseas daughter is actually a very loving thoughtful person which is why her comment hit hard. I really miss her!!!

    I will need some respite but at the moment can't get it. I need to be here to help get my husband back to normal. The uncertainty not knowing if he will recover fully or if this illness is a sign that he is getting worse. Once things settle & the future is clearer I may be able to arrange some respite if needed. I don't know what he will need in the future so I cant arrange anything.

  19. Croix
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    23 April 2018 in reply to Elizabeth CP

    Dear Elizabeth~

    Even loving thoughtful persons can need their perceptions correcting at times. Distance does make for misunderstandings. There is no need for you to be burdened with her misguided thoughts when she should be applauding and encouraging.

    Now your husband is home is there anyone to spell you from time to time? If not a friend or family then perhaps the equivalent of Domiciliary Care?

    Croix

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  20. quirkywords
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    24 April 2018 in reply to Elizabeth CP

    Elizabeth

    I do find your honest posts very emotional and moving. I feel quite in awe of what you do and how you rarely complain. My life is like a picnic compared to what you are coping with yet I often whinge. And you do not seem to at all.

    Did you manage to organise some respite? I think when people are removed geographically like your daughter it is hard for them to know what is going on. She obviously cares for her brother and you.

    I am not comparing my life, just observing and learning!!

    Quirky

  21. Elizabeth CP
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    24 April 2018 in reply to quirkywords

    Thanks Croix & Quirky,

    Re my daughters comments I will try to keep perspective by focusing on my other DIL's comment when I admitted to declining to assist my son & DIL cleaning their house. She said Yes we will agree that you needed to be with your husband!!!

    I don't feel respite is right at the moment. My issue is more the emotional stress. Facing the unknown & possibility that my husband's condition may be reaching the stage where the things we enjoy may not be possible any more. He might improve enough to keep doing things in which case we need to focus on making the most of what time is left. Having the doctor in the hospital tell me that she wouldn't recommend trying to save my husband if he went into cardiac arrest. This fits with my gut feeling but is still confronting coming from a doctor.

    I want to visit a friend who lives near the coast. Having a few days there would give me a break because my husband is friends with her husband & he can take it easy there just as well as at home & being away from home means I don't worry about what needs doing. The biggest benefit would be having a friend to talk to to take my mind off things. We will go but need to wait until my husband can sleep in a normal bed. He currently needs to sleep with the bed tilted so he can breathe. We also need to fit in with the various appointments.

    Quirky your situation is different. You have your own challenges so life is not a picnic for you.

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  22. PamelaR
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    24 April 2018 in reply to Elizabeth CP

    Dear Elizabeth

    Awwww, I can hear your emotional stress and feel sad that you are at that stage of concern about what you and hubby will be able to do in the future. My heart goes out to you Elizabeth. Very hard place to be - lots of emotion there. You have shown such strength throughout your life. Everything you've done, such a powerful woman you are. Seeing your hubby as he is now must truly make your heart ache. I can't find the right words to help you through this difficult time Elizabeth.

    I do hope you get to the beach soon with your friends and hubby. It will be so lovely and peaceful for you. Having a friend to talk with is good too.

    Kind regards

    PamelaR

  23. Doolhof
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    24 April 2018 in reply to Elizabeth CP

    Hi Elizabeth,

    I'm stuck to know what to write to try to be of benefit to you right now with all you and your husband are experiencing. I hope you feel supported by all who are sharing thoughts and messages with you right now.

    There are times when words just don't seem to be enough.

    It seems at the moment you are unable to do so many things you and your husband used to do and the future is uncertain. Change and the unknown can be hard to deal with.

    Are there some things you can still enjoy together? Can you try different experiences or is your husband just too unwell at present?

    I hope you are able to visit with your friend.

    Hugs to you from Dools

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  24. Elizabeth CP
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    24 April 2018 in reply to Doolhof

    Thanks Dools & Pam for you concern & kind words.It helps to feel people care & are trying to understand. Today was better. My husband seems to be less tired & is starting to do a little more.

    My son who has been in a psych ward recently has been diagnosed with severe sleep apnea. This explains his tiredness & lack of concentration. The doctor thinks many of his MH issues have been exacerbated if not caused by the tiredness due to the sleep apnea. Hopefully once he is treated he will improve.

  25. Croix
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    24 April 2018 in reply to Elizabeth CP

    Dear Elizabeth~

    That last couple of posts sounded a little more hopeful, something that might actually help your son is an unexpected blessing. A physical ailment can be so much easier to deal with.

    I was going to talk about non resuscitation, it applied to my late wife, but decided I'd leave that for now. Just letting you know you are not alone.

    When you are able to go on the visit it will be good, can you speed the process by putting a bed-head on bricks over there?

    Croix

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  26. Doolhof
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    25 April 2018 in reply to Elizabeth CP

    Hi Elizabeth,

    It is wonderful your son's sleep apnoea has been picked up. I hope he is receiving all the help he needs in all areas of his health while he is in care. I am sure we all know how much better we feel when we have a good night's sleep.

    It is also heartening to know your husband is feeling a little bit better. I am sure you are both making the most of each day the best way you can. I don't know that you can do anything other than that.

    Speaking of sleep, while staying with family, my sister and I slept in their shed out on their bush block. There happened to be a thunder and lightening storm that seemed to perch right above the tin shed for a while. The thunder shook the whole shed and the lightning flashes were incredible.

    Then the wind came up and I thought the shed was about to be blown away. The bed I was in had an old heavy frame, so I was considering sleeping under it instead of on top of it! Didn't get a great deal of sleep that night! The storm went on all night and disappeared in the morning.

    My sister decided we would return to their home for the second night so we could both get some sleep! At their home they had possums come to visit, so the dog was out barking at them during the night!

    Home to the peace and quiet of trucks rumbling through the town all night long on the highway! Bliss. Ha. Ha.

    Hope you have an okay kind of day Elizabeth.

    Cheers all from Dools

  27. Elizabeth CP
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    28 April 2018 in reply to Doolhof

    Sorry I haven't answered earlier. Things were busy but looking up but just crashed tonight. I feel almost numb with disbelief.

    Anzac day was hectic. I had the extended family over for a delayed party for my husbands birthday. Previous date was postponed as he only just out of hospital. He doesn't see his siblings much so it was important. By the end of the day I was too exhausted to sleep. My husband was feeling much better.

    "6th he saw the GP who confirmed he was on the mend & could slowly get back to normal activities so came home rang my friend & then drove there to stay for several days. Today was nice. Went for a nice walk all together in the sun. A couple of days would have been good for me to slowly unwind.

    Tonight we decided to go out for dinner. Finally my husband is well enough to attempt this. On the way out he tripped over something. An hour later the pain was getting worse so we headed back & by that stage it was clear we needed to get him to emergency. There were no hospitals nearby so I packed everything up & we headed home stopping at the hospital near us. He has cracked a rib & because of his history they admitted him to get his pain under control & reduce the risk of another bout of aspiration pneumonia.

    I have returned home unpacked & need to sleep but my mind is struggling to come to terms with this latest disaster. I need a break to be able to cope with him when e comes home.

  28. Croix
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    28 April 2018 in reply to Elizabeth CP

    Dear Elizabeth~

    What a shock, it is so hard when one disaster piles on top of another. I'm glad you were able to get your husband diagnosed and admitted. You mentioned a friend and also visitors, is there anyone about now to give you a hand or have all departed?

    If it was me (yes I know you will feel duty and concern pressing) I'd try to stay home at least for a few hours or longer before going back to the hospital. Not to do jobs or make preparations, but just to try to recuperate. Things will make their demands soon enough.

    I'm glad you had that brief time and the walk.

    Croix

  29. Elizabeth CP
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    28 April 2018 in reply to Croix

    Thanks Croix.

    I returned home from my friends last night to take him to the hospital. They live 2 hours away. I can't get through to my son who lives fairly close. The rest of the family live further away so can't do much. I just spoke to my daughter who lives over an hour away but she is unwell so can't help at all.

    I ended up taking something to help me sleep as I couldn't sleep otherwise.Mind going crazy!!! I was woken by my friend ringing to check on my husband. Now need to visit the hospital Hopefully get some idea of time frames so I can work out what to do. My mood seems to be fluctuating from really flat to really upset constantly. Can't face contacting the extended family at the moment.

  30. Croix
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    28 April 2018 in reply to Elizabeth CP

    Dear Elizabeth~

    I'm not surprised about the mood changes, you are being dealt hammer blows despite your best efforts, it's going to affect anyone. Plus if I remember you don't sleep that well at the best of times.

    I no doubt sound like a broken record (so I guess you can skip bits:) however going flat out is not always good. Can you ring the hospital to find out the facts and maybe visit sometime later - say shortly before visiting times are over?

    While it might be your husband (and even the hospital) is keen for a discharge your recharge and taking stock needs to be accomplished too.

    Croix

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