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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. Doolhof
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    28 April 2018 in reply to Elizabeth CP

    Hi Elizabeth,

    My goodness, stuff just seems to keep on happening sometimes doesn't it!

    Is it possible to organise some respite care for your husband, even if it is for a week to give you time for a decent rest. I don't know if this is easy to do in your area, if it is financially possible or something you even want to consider.

    If the hospital say your husband will need to be in hospital for a few days is it possible for you to go somewhere and stay overnight close by if need be, just for a total change.

    Sometimes I head away for an over night stay or a weekend away somewhere. I can feel like I have been gone for a week sometimes and is so beneficial.

    It really is horrible bad luck that your husband had a fall. I feel so sorry for both of you! Hopefully you can return to your friend's in time.

    Huge hugs to you from Dools

  2. Elizabeth CP
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    28 April 2018 in reply to Doolhof
    Thanks Dools & Croix. I'm going to my son's for tea. In some ways I'd prefer to stay home but probably need to get out & have a decent meal. Unsure about respite. Can't plan anything until I know how long he'll be in for. I was tempted to drive back to my friends but don't feel up to the long drive at the moment. Will write later once I have time.
  3. Elizabeth CP
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    29 April 2018 in reply to Elizabeth CP
    Today I ended up leaving church early as I couldn't cope. Little things seem to be triggering me. It was mentioned that we need to be watching out for people who are on their own, widowed or without family. It made me feel like I don't count. I have a husband & adult children so my life is OK. I don't need anyone else!!! I know this wasn't what was meant but it is the message I heard. I had to get up early to look after my grandchildren while their parents attended a meeting. The kids were well behaved. Their clothes for church were ironed ready to wear & they had been fed but i struggled getting up on time as I'm so tired. I need to visit my husband but feel unmotivated to do anything. The future feels like a black hole. On one hand I can't be bothered with company I need to be alone but I also feel on my own I'm just dwelling on all the negatives. I don't know what I an do to change this.
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  4. Croix
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    29 April 2018 in reply to Elizabeth CP

    Dear Elizabeth~

    Talk of watching out for people is quite correct, sadly however you are missing the point. You have to watch out for you! Until you do so you will not be in a position to look after grand-kids, son or husband. Please do not spend your resources as you have been.

    It is not the end of the world if their parents missed a meeting, they are adults after all and really should be perceptive enough to realize you are at the end of your tether (Yes I'm be almost certain you allayed any fears they might have had on that score, even so ...)

    Please stay home and rest by yourself, at least for today and hopefully longer. Try consciously to defeat those negative thoughts, not by reasoning with them but by crowding them out wiht gentle tasks, from sorting photos to going for a walk. You can I'm sure monitor your husband's condition by phone. He too has a duty, even when ill, to look after you and not accept every visit that cost so much.

    At some stage you have to come first

    Croix

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  5. quirkywords
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    29 April 2018 in reply to Elizabeth CP

    Elizabeth, After catching up on your posts I think you are coping with so much you are allowed to dwell on what you have to deal with.

    I think it is hard to be positive all the time. You do so much and don't complain and you are human so it must get to you at times.

    I hope you can be kind to yourself and realise what an amazing job you are doing, how mnay people you are helping and that you also need support.

    Thinking of you

    Quirky

  6. Elizabeth CP
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    29 April 2018 in reply to quirkywords

    Thanks Croix & Quirky, I don't think I'm doing a good job. I feel as though I don't fit in. I don't fit into the groups of people who need or deserve help according to society. In some ways that is correct. I don't need physical help. I should be capable of doing what needs doing. My problem is emotional. I'm exhausted because of the long drive home & late night at the hospital & the worry affecting my sleep. Even when home alone I'm worrying rather than relaxing. I'm concerned how I'll cope once he comes home because even on strong painkillers he's not coping & the pain & meds make him hard to manage.

    I don't know where to get support & what support would help me in this situation. I have decided to go back to my friends tomorrow. I can only stay one night because I have an appointment on Tuesday afternoon. One day will be better than none!!!

  7. Croix
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    30 April 2018 in reply to Elizabeth CP

    Dear Elizabeth~

    Well I'm glad you are going for that visit, a pretty good move.

    You are quite right, one day is better than none.

    As for needing help, of course you do, though I'm not that familiar with the services available I do know they exist, one of the people I visit every week had such care, and so does another distant relation. As far as I know it is your husband's condition that is the decider, rather than your physical strength. Plus full-time carers need not only in-house help but respite too on an organized and continuing basis.

    Mind you with your back problems I'd not think you were that fit anyway. Can I suggest you ring our support line on 1300 22 4636 and ask what services are available in your area. I'd also talk to your and your husband's doctor as well as the Hospital Welfare Officer. You are most capable of making those inquiries.

    I hope you enjoy that day away

    Croix

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  8. Elizabeth CP
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    1 May 2018 in reply to Croix
    I asked the nurse if there was any help available when my husband gets home. I was told he normally showers himself & he has me to do all the meals housework etc so there was nothing available. She was going to get a social worker to ring yesterday but that didn't happen. I rang BB & was told they only have brief counselling so I should just read or go for a walk to distract myself. I try that anyway so not much help. Today I was due to see my psych & felt I really needed him only to get a text cancelling appointment as he was sick. Not his fault but it feels like I can't win. I went for a walk this afternoon (my friend had to go out) thinking that would help but my thoughts became very negative. Don't know where to turn for help.
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  9. Doolhof
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    2 May 2018 in reply to Elizabeth CP

    Dear Elizabeth,

    My heart goes out to you! For the last few months I feel like I have been running around all over the place trying to get help and no one is listening!

    I even walked out the front of the Church (uninvited) and told the congregation I was so depressed I was experiencing suicidal thoughts daily. The Minister came over, prayed for me and told me to go and sit down! That was that. Nothing else happened.

    I even wrote to the Minister of Health in our State, and was given phone numbers to ring.

    I don't know how you get the help you need Elizabeth! I just hope by some miracle you do receive it!

    Reading self help books seem to help me to a certain extent. It is okay as long as your mind is in the right mood to take the information in!

    Your frustration is understandable! I hope someone there listens to you and helps you soon!

    Huge hugs from Dools

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  10. Elizabeth CP
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    2 May 2018 in reply to Doolhof
    Thanks Dools, Your experience is appalling but seems typical of those with MH issues. It is too easy to hand over a phone number or pat you on the back & say 'You hope they're OK' but rush away before the talk gets any deeper.
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  11. Croix
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    2 May 2018 in reply to Elizabeth CP

    Dear Elizabeth~

    I'm sorry too your can't find the help you need at the moment, but knowing you I don't think you will meekly accept the situation.

    Sometimes just walking does not drive the thoughts out, which is a right pain as I rely upon it to do so, then I listen to a podcast while I go. The combination of the two often does help. Robyn Williams to the rescue:)

    Have you managed to get a spot of rest?

    Croix

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  12. Elizabeth CP
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    2 May 2018 in reply to Croix

    I spent a few days with my friend. Returned this afternoon. It was nice to have some company & the chance to walk on the beach & just get away from things. Unfortunately I'm finding when on my own my thoughts became very negative. My friend had a few prior organised commitments so I was on my own part of the time. I was surprised how quickly my thoughts could plunge into wanting to be dead. I will NOT actually do anything to make that happen.

    As for getting help. I'm unsure what help I need. I don't need physical help. I need to know there is someone I can call for help if I need it & not be judged. My friend is nearly 2 hrs ago & hearing impaired so I can't talk to her on the phone.

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  13. Doolhof
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    3 May 2018 in reply to Elizabeth CP

    Hi Elizabeth,

    Those thoughts going around and around in your head can become destructive if we don't fiond ways to quieten them down.

    One thing a psych told me was to start singing as the mind can not sing a song and think negatively as well. The only song I can usually come up with is Old McDonald had a farm! Lately it has been Tie a yellow ribbon round the old oak tree. I only know a little of that song so it gets very repetitive!

    Does it help to write down your thoughts, than look at how you can change some of the negatives or to accept them for what they are?

    When out walking, if my unhelpful thoughts start getting a bit monotonous I try to think of a colour for every letter of the alphabet, a flower, a name of a country or what ever. Before I know it my walk has ended or I have walked a long distance and need to turn around and head for home again.

    Have you ever tried the phone help lines? I have been fortunate enough o get a couple of lovely people on them who have really helped me.

    There is a lady at Church whom I try to talk to who has hearing aids that don't seem to work very well, as we have two completely different conversations! Ha. Ha.

    I do so hope yo are able to find the help that you require Elizabeth! Hugs to you from Dools

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  14. Elizabeth CP
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    3 May 2018 in reply to Doolhof

    I'm currently procrastinating.

    Thank you Dools for your thoughtful reply. i haven't found helplines helpful. By the time I explain my situation they are cutting me off with platitudes. My singing is not good so would probably annoy me!!!

    I was lucky my psych recovered enough to see me today as I had texted him when he cancelled to say I was desperate. It was a pretty heavy session as there was so much negative stuff to discuss. He asked me to email a person at church who said something which really upset me. I have done this. I'm a bit nervous about how it will go. I was also asked to speak to someone else to explain my situation. He wants me to speak to them in person but I'm scared. I feel such a failure needing to ask for help & I'm worried about what to say.

    I saw my husband tonight. I really struggled to understand him. His pain meds have changed & he seemed rather dopey & just mumbled.

    My daughter is struggling now. I feel bad I can't help her as she is exhausted due to pregnancy complications. She will need hospital treatment if she doesn't improve soon.

  15. Elizabeth CP
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    4 May 2018 in reply to Elizabeth CP
    Still struggling to get motivated to do much. Feeling tired & unsure re the future.
  16. blondguy
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    4 May 2018 in reply to Elizabeth CP

    Hi Elizabeth

    You have a lot to contend with...It would be sad to be watching your family struggle (your husband and daughter)

    May I ask you if you have had a reply from the person in your church?

    You are a legend for enduring the session with your counselor Elizabeth. That takes serious strength. There are many people that just dont make that effort and they wonder why they never find some peace/relief

    I have a sibling that still thinks that seeing a psychologist is meant to be relatively happy experience. You and I both know its anything but. You sessions are just like mine...If I dont feel uncomfortable (or occasionally cry) in my appointments I know my psych isnt doing his/her job properly

    That tired and unsure feeling is an awful place to be in Elizabeth...I get it...ugh

    My kind thoughts for you always

    Paul

  17. Doolhof
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    5 May 2018 in reply to Elizabeth CP

    Dear Elizabeth,

    Sending you huge hugs and a big bunch of sunflowers, these flowers are so big you are going to need a huge vase for them.

    Wish I had some answers for you. I am sure you sometimes wish you had the energy and the ability to split yourself into many parts so you can be there for all of your family members. You can only do what you can manage Elizabeth. I know that doesn't help when you want to be there for everyone.

    Sorry to read the pain medication was having an affect on your husband. That must be really tough. IT is understandable you are feeling confused and mixed up right now. I think I would have curled up in a ball by now and said it was all too difficult!

    Are you managing to get out for a walk now and then? Does that help you? I'm planning on getting out today even if it is just for 1/2 an hour.

    Thinking of you Elizabeth and your family. All the best, cheers from Dools

  18. Elizabeth CP
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    5 May 2018 in reply to blondguy

    Thank you Paul. I did receive a reply from the person at church. He clarified what he meant stating people like us do deserve help (not what he said at church) He was going to speak to someone else re the situation. Hopefully the message filters down that people can't be put into boxes eg the widows need help but those with families don't. I emailed the other person I was supposed to speak to as I couldn't face ringing them. IThey rang me back. I find it really hard to know what help I need & feel terrible asking for help. It makes me feel so useless.

    Attempts to have a break doing things which used to work for me no longer work. I struggle to relax at home because I'm constantly reminded of all the things which need doing. Attempts to go away no longer work as I've gone with my husband so I have to watch out for him and cater for his needs. Because he is blind & has other problems it is harder for him in unfamiliar environments although he likes going away but I come back exhausted. According to my psych I need at least 2 weeks away from all demands as it will take at least a week to wind down before starting to relax. I think he is right but I don't see how I can manage that even if I didn't have to worry about my husband's current condition.

  19. blondguy
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    5 May 2018 in reply to Elizabeth CP

    Hi Elizabeth

    Its good that you had some progress re the church matter...even though its sad that 'some' people always think they know better.....and especially in a church environment!

    Your psychologist knows that you have a ton on your plate....so much that it can leave us with a 'tired' mind. I have had an 'exhausted' mind on and off since the anxiety attacks started in 1983. Your psych seems to be spot on Elizabeth...and yes it would be difficult to manage doing so. With all due respect to your family and the TLC you provide, your health is always paramount. It took me years to understand that all other considerations are secondary where my health is concerned.

    I hope you have some peace...soon

    My kind thoughts

    Paul

  20. Elizabeth CP
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    5 May 2018 in reply to blondguy

    Thanks Paul. I'm on an emotional roller coaster which for me is a good analogy as I hate roller coasters. Even the going up is marred by the fear that you'll soon reach the top & plunge down again which is even worse. I'm not doing well motivating myself to do things which I need including eating healthy & keeping the house clean & tidy washing dishes etc. It is an effort to motivate myself even though I know I should for my own wellbeing. I don't mean cooking gourmet meals or having a pristine house but just doing things so the house feels nice to be in & meals are nutritious. I don't know why it is such an effort at the moment.

    I spent a lot of time at the hospital. I wanted to leave but they wanted me to wait for the doctor to see us. I found it extremely stressful trying to act as a go between my husband & the doctor. Having to explain my husband's point of view when he was being unreasonable & not making sense & then trying to help him understand the doctors perspective as he thought the doctor just doesn't care.

    I know I need a complete break to recover enough to cope but I can't see how this can happen.

  21. Croix
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    5 May 2018 in reply to Elizabeth CP

    Dear Elizabeth~

    I know you think a complete break for a couple of weeks is unrealistic, and maybe you are right, however that does not mean you should not try to reduce the toll life is taking on you in every way you can.

    I know it can seem almost impossible to plan at this time, however could you map out the next few days with some hospital visits, but time to yourself too? There must be things you've enjoyed doing in the past you can take up again now.

    A house is just a place to live, if you do not give it priority for a while it is no great matter. Similarly meals simply sustain, and if they end up hit and miss it will do no great harm. Can you eat out more, not in the most fancy of restaurants, but something sensible?

    Maybe it is time to draw in the targets you have set yourself - for just a while to pace yourself.

    Croix

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  22. Elizabeth CP
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    5 May 2018 in reply to Croix

    Thanks Croix,

    I'm finding it hard to plan because of the lack of discharge date. Last time I was given an hours notice to pick my husband up. I assume he will be in till Monday to see the pain specialist team but once they decide they can't do any more he'll be sent home & then the burden will be full on. .

    I am upset with myself for not eating properly I'm eating too much junk which is making me feel worse. I have food in the fridge & freezer which doesn't take long to cook so I have no excuse. Similarly with the house. Over the last couple of years I've tried to keep the house clean & tidy (but not perfect) The aim is to keep it in a state that is comfortable for me & to stop things getting too messy or disorganised as this really impacts on my MH. This is different to my tendency to overdo things pushing to do projects which are currently all on hold.

    I need to push myself to find somethings to do which I enjoy. I 've been taking too long doing essential/urgent things lately. eg I found mice had got into my pantry but took too long sorting it out because of the situation which made it even worse.

    I received a phone call from a friend from church. She is very busy with a lot on her plate so I hadn't rang her. She'd found out about my husband so was checking up on me. It was nice to have someone who cared about me not just getting an update on my husband. I felt she understood She offered to speak to someone to make some changes to try & get me better support. It helped having someone who cares.

  23. Croix
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    5 May 2018 in reply to Elizabeth CP

    Dear Elizabeth`

    You must think me a broken record going on about the respite you need. Actually I've a pretty good idea you know it all in detail already, but feel somewhat hamstrung, the discharge date being a good example. I think you to a most excellent job and overcome tremendous hurdles just looking after your husband, let alone trying as you can for your kids too.

    I'm really pleased your friend from church rang and was concerned about you. You are right, having another think of your welfare does make quite a bit of difference.

    I've been outside for a short walk, it's night of course and very windy, blowing my hood on and off my head, though not over cold. It was one of those occasions to treasure, as I looked at the water tank I saw a possum with a baby hanging on to her back. She was on top of the water tank looking at all the trees thresh around and probably appreciating a stable base to sit.

    A simple thing, not everyone's cup of tea, but gave me a moment's enjoyment and perspective.

    Croix

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  24. Doolhof
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    6 May 2018 in reply to Elizabeth CP

    Hi Elizabeth,

    Just sending you a message to let you know I am thinking of you and hoping you do find some pleasure in your day today.

    I like Croix's story about going out for a walk in the wind and seeing the possums. Sometimes just noticing the little things can help to make each day feel a little more special.

    Hope your day goes okayish.

    Cheers to you from Dools

  25. Elizabeth CP
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    6 May 2018 in reply to Doolhof

    Dools Thank you for your kind words It helps feeling you care about me.

    Croix, It isn't a broken record. It is just played on high rotation. The broken record would just play meaningless jargon. You repeat yourself because you see it as important. I need to hear you even if it is repeated because I need to feel you understand & care. So thank you!!! Thank you for your story about the possum. The message I take from that is to take time to notice & appreciate little things to take my mind off the problems. Today has been up & down. A few people spoke to me & showed they cared. Unfortunately my stress levels are so high little things set me off. Even trying to explain what is happening reinforces negative feelings even though the person is trying to help. I left church early as I got too overwhelmed. I felt pressured to fit in & couldn't cope. Noones fault except me needing space. I seem to be on a very slippery slope into a very dark place with extremely negative thoughts. I don'y know how to get out.

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  26. Doolhof
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    6 May 2018 in reply to Elizabeth CP

    Dear Elizabeth,

    How do you get out of the hell you are currently in? Sometimes I do it with oceans of tears, sometimes I am so angry I am almost kicking and screaming my way through the depression and confusion.

    Sometimes I need to just let go of everything, try not to be in control and float.

    I also need to remind myself that other people might not know what to say to help. Sometimes I need to tell them what will help. Sometimes I have no darn idea what any one can do to help, nor how to help myself. All of this is okay Elizabeth. Not knowing the answer right now is okay.

    Maybe for now it is enough that you breathe in and out and you keep doing that all day. Add some food and liquid and you have survived another day.

    Maybe you need to wrap yourself up in a blanket for a while and just snuggle there.

    Dear Elizabeth, I am not in your shoes, I do understand the feeling of pain and suffering and not knowing.

    One moment at a time dear precious lady.

    Kind regards from Dools

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  27. Croix
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    6 May 2018 in reply to Elizabeth CP

    Dear Elizabeht~

    Than you for being understanding, I do go on and on because I believe it is as fundamental to have pause, as is breathing.

    You are right too about the possum. As stress increases and circumstances crowd in our view of the world shrinks - for me anyway. One is consumed with a set of problems and while the mind looks for solutions none seems to offer itself. In fact at times when my partner reminds me gently there is more than I can see I can get quite cross and even resentful. I've never really worked out why except the reminder seems to make more demands than I am capable of meeting.

    The world is bigger than we are seeing when pressed. That possum and my appreciation of it remind me that all the things I'm finding as insuperable barriers are just part of what I'm in. It does so in a gentle undemanding way leading by virtue of my enjoyment of the moment to remember all the hassles are just a segment of everything.

    Things will get better

    Croix

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  28. Elizabeth CP
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    6 May 2018 in reply to Croix

    Dools,

    Thank you for your understanding. Hopefully one day it will be just a bad dream. I've just got to try not do anything to make it worse!!!

    Croix, Thank you. I really appreciate hearing from you.

    My son rang & invited me for dinner. I went although I didn't feel like it but at least I got a nice meal & some distraction from the grandkids. They like me chasing them & then they like to pretend to attack me. I was tired so didn't stay long & then visited the hospital on the way home which was stressful. Hei hardly eating or drinking anything so is getting weaker & less able to cope. I don't know what to do.

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  29. Doolhof
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    7 May 2018 in reply to Elizabeth CP

    Dear Elizabeth,

    Once more my heart goes out to you. It was wonderful you could visit family even if it was for a short period of time. I am so deeply sorry your husband is struggling so much. It must be so heart breaking for you and confusing, not knowing how to help or what to do.

    Feeling vulnerable and so open to our emotions can be painful and difficult. I remember one time after having been in hospital, I think it took me months to get back into the real world again. In the mean time, surviving kicks in.

    Are there counsellors or Chaplains at the hospital you could arrange to talk with? Is there an elder in the Church you could talk with and ask to pray for you if that helps you? I know Church people are just people, and things don't always go as you hope, it might be worth a try.

    My sister told me of some religious people who happened to knock at her door when she was suffering from post natal depression. She told me she gladly invited them in and kept making them copious amounts of drinks and provided food until she had nothing left to say. Then she let them go! Ha. Ha.

    Hope you find the support you need Elizabeth. Hugs to you from Dools

  30. blondguy
    Life Member
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    blondguy avatar
    11398 posts
    7 May 2018 in reply to Elizabeth CP

    Hello Elizabeth

    I know you have a ton on your plate and at the risk of sounding like 'another broken record' may I ask you who you get to vent to? I think my GP is getting weary of me as I see him every 4 weeks...but its a great way for me to ground myself and always feel better afterwards

    Dools mentioned something that took me years to get a 'handle' on as I was in the same dark place as you are now...Dools mentioned "Sometimes I need to just let go of everything, try not to be in control and float"

    That took me nearly 20 years to do

    Hoping you will find some peace...soon Elizabeth

    Paul

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