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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. blondguy
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    26 March 2019 in reply to Elizabeth CP

    Hi Elizabeth

    Im sorry about my post above...I was only empathising with you about your visit to the psychiatrist when I mentioned I have to see my psychiatrist in early April for therapy and a medication review (for my AD's) Since you have brought up sleeping tablets they are an excellent tool to help us help ourselves as you mentioned

    I also take sleeping medication when needed so my lack of sleep doesnt exacerbate my anxiety levels

    I hope that your husbands' specialists can find the best medication without the nasty side effects to aid his recovery

    Croix is spot on.....You are a Star :-)

    my kind thoughts

    Paul

  2. Elizabeth CP
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    27 March 2019 in reply to blondguy

    Paul you have nothing to apologise for. My reply to you was clarifying my situation & certainly not meant to imply I was upset by what you said.

    Last night I realised I had no text message confirming my appointment but it was too late to ring & confirm so I went. Arrived to find the appointment was cancelled & rescheduled in 2 months which clashes with something else so I can't be seen for another 3 months!!! They said they sent me a text to reschedule but I never recieved it. I wasn't happy as it was 45 min drive each way & I need to be seen. I will run out of sleeping tablets before the next visit. I normally see him every 4 weeks but he was away in Dec & January which was actually 3 visits cancelled. I couldn't see him in Feb & now he's cancelled another 2 visits. making it over 6 months. I feel like just giving up.

  3. Croix
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    27 March 2019 in reply to Elizabeth CP

    Dear Elizabeth`

    hopefully your GP can maintain your meds, is this the only psych possibility?

    Of course they did not text, or it would still be on your phone :(

    Croix

  4. Ggrand
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    27 March 2019 in reply to Elizabeth CP

    Dear Elizabeth,

    Its horrible when our appointments are cancelled and we are not told..it has happened to me on more then one occasion and I’m really sorry it’s happened to you.

    Elizabeth, if you use the same chemist mostly to get your script filled for your sleepers, you could probably speak to the chemist about running out before you got a new script..Usually the chemist will ring your doctor while your their and your doctor will say yay or nay..if yes the chemist will get your meds straight away and your dr will send prescription through the mail to the chemist..I have done this a few times...I don’t know if that helps or not..just something I remembered when I read your post..and I’m just wanting to help..

    Please do not give up dear Elizabeth..🤗...

    Kind thoughts and warm hugs..🤗🤗.

    Grandy.l

  5. Elizabeth CP
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    29 March 2019 in reply to Ggrand

    I just checked & I won't be able to see the psych until July as I'm not able to attend in May or June. Appointments are scheduled every 4 weeks but if an appointment is cancelled because either he is unavailable or I am unavailable on the day no alternative appointment is available. I'm uncomfortable asking the GP for meds. I haven't spoken to her about my MH issues. The psych is away for 2 months (after being on holidays for holidays for over 2 months (3 appointments) over summer so he can't OK scripts over the phone.

    I don't feel able to find another psych & go through the long process of building rapport. I don't want to be pressured into taking medication. My experience with meds has been so negative I will not try any more.

    My husband came home yesterday. He is doing OK but I'm struggling with the thoughts about the future. Discussion re equipment, & medications we should have on hand in case of emergencies is scary. Of course no one can say if or when things will go wrong to such a degree that I have to save him. My mind is going in circles trying to work out what his all means & the impact on our lives.

  6. Guest_1055
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    29 March 2019 in reply to Elizabeth CP
    Hi Elizabeth, I cannot offer advice because I don’t have any. But I am listening to you.
  7. Elizabeth CP
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    29 March 2019 in reply to Guest_1055

    I am really struggling. I feel exhausted & struggling to think clearly or do things properly. I went for a short walk with my husband. I would normally find it very easy but felt like I was exhausted as if I was climbing a long steep mountain instead of walking on a flat footpath. I think it is just anxiety making me feel terrible. I cut myself trying to break open the vial of medication to inject my husband. I felt pressured by the nurse supervising me to make sure I was doing the injection correctly. I'm sureit was my anxiety levels which made me very clumsy & uncoordinated. I need to be able to discuss what is happening to help me sort out my thoughts & feelings. I can't talk to my husband because I don't want him to feel worse or guilty because it is not his fault. It is hard enough for him to deal with what he's been through without worrying about me.

  8. Guest_1055
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    29 March 2019 in reply to Elizabeth CP

    Oh my heart goes out to you Elizabeth. I am so very sorry you are struggling. Do you ever have a good cry? Just let out all the emotions and heaviness out that way?

    Wish I could help you sort out your feelings and thoughts.

    But I am still listening to you if you would like to keep writing here.

  9. blondguy
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    29 March 2019 in reply to Elizabeth CP

    Hi Elizabeth....Thankyou for your caring post above

    It is the anxiety levels....that you mentioned that make us clumsy and awkward as anxiety does have a direct impact on our levels of concentration...

    Do you have anyone that help you care for for your husband at the moment? .....Just so you can take a breath? (please ignore the question if its already been answered)

    I hope your husbands medication is working better without the nasty side effects

    my kindest

    Paul

  10. Elizabeth CP
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    30 March 2019 in reply to blondguy

    Thanks Shell, & Paul for your caring posts.

    The medication trialled in hospital which didn't help but had bad side effects have been stopped. The injections have bad side effects but do work to stop hom choking overnight. I have administered it the last 2 nights when he was at risk due to his fatigue. This gave me chance to learn what to do with the nurse supervising. We will try going without tonight to see how he goes. If that goes OK we will only use it in an emergency if he starts to choke badly or if he feeling very unwell & is at risk of choking in bed.

    My real problem at the moment is emotional. Worrying about what is going to happen in the future & what impact my husband's condition will have on our life and how we need to adapt to manage the changing situation. We are unable to live in our own house because of the mould & the people who are supposed to be rectifying the damage are taking ages. This means we don't have our normal things & nothing is familiar making it impossible for my husband to find things without help due to his blindness. A carer wouldn't help in this. He is not well enough to restart his speech or physio exercises. Unfortunately I haven't found carers help much because it takes me so much effort to explain what is needed. As for family my son is the only one close to us but he is very busy.

    I found out recently my middle son spent a few weeks in a psych hospital. His wife never told me. I hadn't been able to contact him while my husband was in hospital obviously because he was unwell. Don't know why I wasn't told!!!! His wife only speaks to me when she wants someone.

  11. Elizabeth CP
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    1 April 2019 in reply to Elizabeth CP
    Still struggling. Really need to be able to talk to someone to sort out what I need to do to move forward but don't know who. I feel trapped. I feel like I'm just a carer no longer a wife.
  12. Croix
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    1 April 2019 in reply to Elizabeth CP

    Dear Elizbeth~

    I'm not in the least surprised you are feeling trapped. You are caring for a high dependency person in unfamiliar surroundings with little in the way of contingency explanation. No wonder you feel the need to talk with someone knowledgeable.

    You have already said that your son is helpful and responsible, even if busy. It may well be that, busy or not, he has to share part of the load. This might be in finding the right advice for you, ensuring you get respite, or simply ensuring tea is cooked for you.

    You need a manager, and he looks like the only viable candidate you have mentioned in the past. Do you think there might be anyone else?

    I'm sorry to hear about your middle son, I have the feeling it is not entirely unexpected that this might happen, and it is a real shame your DIL is the way she is.

    I'm thinking of you, as are the rest of us here, you are not alone.

    Croix

  13. Elizabeth CP
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    2 April 2019 in reply to Croix

    Thanks Croix, My oldest son does try to help where he can but is limited with time due to work & his own family as well as other commitments. He's often invited me for tea on a Sunday evening which is a break. He will help when he can eg he checked some things on my computer that I was having difficulty with. He also listened to my complaints re the house & both him & his wife made suggestions what I should or could do. It helps to have someone understand & be encouraging & acknowledge that what is happening is tough & what I'm asking for is reasonable. He has offered to learn to do the injections in the future if I need to go away for a break. Of course he wouldn't be there overnight as he needs to be with his own family. His wife is pregnant & needs him.

    I saw my psychologist today. I mainly just vented but that helped. Still feeling tired & headachy but a bit better

  14. Croix
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    2 April 2019 in reply to Elizabeth CP

    Dear Elizabeth~

    Like me I think you find having someone makes a world of difference, they may not be able to fix everything, but just the understanding and care is a balm. Offering to learn to do the injections is a pretty big thing, even if nights are out. I remember having to give my late wife injections for diabetes and it was difficult and I'd hurt her as often as not.

    Psychologists are indeed there to vent to on occasion :) Goes with the territory

    Croix

  15. Elizabeth CP
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    6 April 2019 in reply to Croix

    My husband is doing much better. He still needs more sleep than normal but he is eating again & able to walk. I am still struggling coping with the issues re fixing our house. I thought we were moving forward until a call from the insurance company yesterday making things more difficult. I struggled to sleep last night as I couldn't switch off from worrying about things. I'm still feeling very uptight & can't relax at all. I really need my son to help me negotiate with the insurance because I'm too upset to be able to be effective. Unfortunately I don't see how he can help since he will be at work when the people are available to talk to. I need to be around if he called to give permission for him to talk to them.

    I'm finding it hard to be focused on the things I need to do. My mind is all over the place.

  16. Croix
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    6 April 2019 in reply to Elizabeth CP

    Dear Elizabeth~

    As far as I know every insurance company, service facility -even Telstra - have a mechanism whereby an 'authorized person' can be nominated who can act on the account holder's behalf. You may find it as simple as a voice call (which they record) , or an email, though sometime it needs to be letter that is faxed or snail-mail'd. When that has been received your son will be able to talk anytime with authority.

    This can be revoked by the account holder at any time.

    I'm glad your husband is improving - now you need to:)

    Croix

  17. Elizabeth CP
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    10 April 2019 in reply to Croix

    Still waiting for the mould removalist to come back & check if the house is safe. Machines have been going since Sat to filter air. & dehumidify. The mouldy plaster is gone. We have to move to a different temporary accom tomorrow. This time with no kitchen facilities!! My husband is doing OK but still tires easily.

    I am still struggling feeling stressed & worried about what is happening. I'm not getting proper answers from the insurance company so have no idea what is happening, how & when I'll have a functional kitchen again.

    I had to babysit for my daughter on Mon. Her husband going through a very challenging time which is having a big impact on the whole family including my daughter. Trying to support her is necessary but is really adding to my stress.

    My psych thinks I'm burnt out & need time to do nothing to give myself chance to recover my energy (physical & mental) but finding a chance to jump off this merry go round is impossible.

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  18. Croix
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    10 April 2019 in reply to Elizabeth CP

    Dear Elizbeth~

    All the move and strange accommodation is an extra layer of stress. Something you do not need!

    Can you get your son authorized so you can at least 'tag-team' the insurance company?

    Being burnt out and needing a break is so obvious I'm surprised you psych bothered to mention it. If a long break is possible are very short ones that shunt the mind away from everyday life possible -I'm thinking of Smiling Mind, a free app I use at least partly for that purpose. It does take a smartphone, though there is one exercise on the web. A 2-minute exercise is surprising.

    Croix

  19. Croix
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    10 April 2019 in reply to Croix

    Sigh -my typing is getting worse.

    I meant of course: If a long break is not possible

    -C

  20. blondguy
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    11 April 2019 in reply to Elizabeth CP

    Hey Elizabeth

    I hope your 'middle' son is okay and yes.. its very sad when we arent informed about whats happening...I echo Croix's thoughts and life experience above Elizabeth.....I read that your eldest son is doing everything he can to help out which is good news.

    Since there is no such thing as a dumb question.....(seriously)....can I ask if you have someone that you can lean on in this difficult and stressful time?

    It is some relief that the meds have worked out for your husband.....yet as you mentioned Elizabeth....this set of circumstances are having an effect emotionally now

    how are you feeling? I really hope you find some peace soon Elizabeth

    Paul

  21. Elizabeth CP
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    11 April 2019 in reply to blondguy

    Thanks Paul & Croix,

    I think the psych talked about being burnt out to help me put my negative thoughts & guilt feelings (re lack of motivation & feeling like I'm useless) into context I guess he wanted me to focus on just doing the essentials rather than beating myself up for not doing everything I should. Unfortunately not doing well with that. Last night got to bed late as I needed to pack things ready to move & then kept waking up worrying.

    I went out with my son & daughter & grandkids. My son was quiet & seemed very flat. I'm unsure how he is. My daughter is also going through a stressful time & needed to vent but couldn't talk with my son present. She is needing me to babysit each week. She is 1 1/2 hrs each way from us so it is hard as We have to leave so early to get there on time. My husband struggles getting up early. I'm concerned that by agreeing to help it is enabling her husband to do things the way he wants rather than understanding how it impacts on others. I don't want to be mean & I know my daughter needs help but her husband needs to realise that his way of doing things is unsustainable.

  22. Elizabeth CP
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    18 April 2019 in reply to Elizabeth CP
    I saw my psych Tuesday. Although he couldn't fix my problems having him listen & make some suggestions to help cope was helpful. I came away planning to try a few things to help me cope. Unfortunately that quickly changed on returning home and finding my computer not working. I'm now using my old computer which is VERY unreliable & can't be charged. I won't list the rest of the issues. I had lots of information stored on my computer including plans for NDIS review, & for forthcoming trip to UK to visit my son's family & my daughter. This tipped me over the edge. I became angry with my husband when he was trying to help. I feel like there is no point in trying. My son tried to fix the computer only to conclude it needs new parts which are likely to be more expensive than a new laptop. (He is an electronics engineer & has been fixing computers since he was in primary school. ) I was phone yesterday to be told the person coming to remove the mould today was unable to come so it will be late next week before there is any chance of the final tests to see if the mould is gone. Until this is done nothing can be done to move forward with fixing the kitchen. I'm struggling to think straight. Last night I found it really hard to cook tea & then struggled to sit down to eat. Every time I tried to take a mouthful I felt driven to get up to do something else even though I knew logically my actions was irrational. I have things I need to do urgently but can't get motivated. My head is spinning. I feel guilty because it is my husband's birthday & I can't get motivated to do anything nice for him. He doesn't deserve to have such a useless wife!!!
  23. Croix
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    18 April 2019 in reply to Elizabeth CP

    Dear Elizabeth~

    >I knew logically my actions was irrational

    You are absolutely right, you are in frantic overdrive and it is chewing you up. Computers are a pain, hopefully your data can be saved. Your husband is lucky to have you, you are quite birthday present enough.

    See about modest paid help to do a bit of cooking short term and cleaning -no not to your standards but you will be able to go outside or sit in another room and work on your relaxation - Something like Anglicare could probably advise you where to get someone.

    This may seem an unsatisfactory solution in many ways, if you become so ill you cannot do all the thing you do now that is an unsatisfactory solution too -and we care about your wellbeing

    Croix

  24. Guest_1055
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    19 April 2019 in reply to Elizabeth CP

    Hi all,

    Oh Elizabeth you sound like you are struggling big time. Weighed down with everything. Wish I could help you more.

    But hey, if you do not mind me saying so. I think you are believing lies. The lie that says you are useless. Because if you really look at it logically you are far from it. I think once we start to believe it, we then start to feel it. I think we have to catch these thoughts and then see if there is any truth in it. If not (and in your case, it simply is not true) ditch it. One only needs to read in this thread of yours and the truth pops out. You are not useless at all.

    Please don't feel discouraged.

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  25. Elizabeth CP
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    19 April 2019 in reply to Guest_1055
    Thanks Croix & shell. Unfortunately I can't even book anyone to come & help because of the situation with the house. We are still waiting for the mould removalists to finish & declare the place safe. I have no kitchen sink or bench app none would be able to help.
  26. Elizabeth CP
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    26 April 2019 in reply to Elizabeth CP
    Sorry I am overwhelmed trying to cope. Things I normally enjoy are not possible at the moment. Still no progress re house/kitchen Rang insurance company today& told they're waiting for reports before they can send the next person. Then will need someone to come & do a new scope of works as lots of extra work needs doing because the mould spread due to delays. Computer isn't worth fixing so need to work out what to do. At the back of my mind is the constant fear of another episode with my husband's health & the need to be trying to minimise the risks while allowing him to enjoy life. This has left me feeling really stressed & anxious but I can;t even find a way to have a break without more stress organising it.
  27. Guest_1055
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    27 April 2019 in reply to Elizabeth CP

    You do sound stressed Elizabeth. I even started to feel a bit stressed as I was reading your words.

    I am not sure if anything I said would help. But I can tell you some things that work for me when I feel stressed.

    I just cry, let all the emotions go.

    I will write a list of everything going around in my head.

    I will attempt to focus on one thing at a time on my list. Start with the most important or pressing thing first.

    I will pray

    I need to say no to some people or no to some things in my life

    I will meditate on God's word. "Let not my heart be troubled, and Lord I trust in You"

    I go for a walk

    Watch a good feel movie

    Try to eat lots of veggies. No sugar

    Go for a drive in the country where its nice and quite

    Go to the pet shop and look and look at the coloured fish swimming around

    Some times I have waited too long to do all or any of the above. And then everything turns into one muddled up snowball. My thoughts get mixed up, cannot think clearly, I see issues larger then what they really are, I am not a pleasant person to be around, I would feel weighed down (think... giant snowball racing down a hill and wiping me out or sitting on top of me)

    And I am not sure how much you tell your hubby or other family members what you are feeling. But I wonder if you should say more.

  28. Doolhof
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    27 April 2019 in reply to Guest_1055

    Hi Shelley, Elizabeth, Croix and All Reading,

    Shelley I really like the list you wrote, including going to a pet shop to see the fish. I'm not sure where our closest pet shop is, but when I am near one, I too like to see the fish and also want to buy all the kittens to take home with me! I wonder if my husband would notice!

    Elizabeth your frustration with the situation with your kitchen is understandable. Waiting for everything to be returned to normal must be tedious for you. Are there some little things you can do to make it easier for your to deal with things?

    I am not in your shoes Elizabeth, nor are your family members and friends, so it may be hard for them to know what it is like to live in your shoes 24/7.

    Can you make time to do any of the things on Shelley's list?

    Thinking of you!

    Cheers from Dools

  29. Guest_2496
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    27 April 2019 in reply to Elizabeth CP

    Hi Elizabeth

    Excuse me jumping in here late but I saw you mentioned your thread in another section.

    I know when I'm completely overwhelmed everything seems too difficult so I don't know if you'll be able to do what I can suggest. AND I don't know if it's financially possible for you, or if there's somewhere near you to help of course.

    When I've had laptops give up I took it to a repair shop and while they couldn't repair it (or as your son said the parts would cost more than it's worth) what they did do was to take out the hard drive (I think I have the term right! all the memory anyway) and put that in a small separate case and THEN with a usb type cord it could be connected to another computer, say the one you're now using, and you'll still be able to access all that info NDIS info etc.

    I'd also like Someone to advocate for you. I don't know how old your son is or if he can do it but to ring the insurance co again and just tell them it's just not acceptable to keep you waiting another day longer. With the health issues of your husband etcetc you need your kitchen back!

  30. Ggrand
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    27 April 2019 in reply to Elizabeth CP

    Hello Elizabeth...

    Im sorry that your so overwhelmed...The kitchen has taken some time to get sorted out...and I could imagine that it would be terribly hard for you to be constantly concern about it getting finished...

    I also like Shelly’s list of distraction tools..please try as hard as you can to distract yourself when you feel so overwhelmed.li know it’s hard to do...but we just cannot ever give up trying to...

    I read elsewhere your thinking of giving up on your thread..please don’t..and please never give up on you...

    Elizabeth...keep trying to tell yourself thatthe mound will be removed and you’ll be back into your normal routine..I do hope it’s soon though....

    Elizabeth...It’s important to care for yourself as well as the wonderful amazing job you’re doing caring for your husband...and your son and his family...Take some time out for yourself..if you have to many chores to do each day..please put some off for another day and try to sit outside in the sunshine or do something you like to give yourself some care...

    Thinking of you Elizabeth.l

    Kind and caring thoughts..💜🌷..

    Grandy..

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