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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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    27 December 2019 in reply to Doolhof

    Dools Thank you for your reply & helpful suggestions.

    Croix Thanks for your caring reply. Unfortunately we have ducted aircon so it is all the house or none. I had a long discussion with my husband on Christmas day continuing into Boxing day trying to decide what to do re meds. Obviously discussion had to be suspended while we were at my son's for family get together. After the long discussion & lots of thought I've decided to cut back to the starter dose I was on prior to seeing the GP. The level of anxiety on the larger dose combined with extreme tiredness & other side effects is making it too hard to attempt strategies to help me deal with the heat & smoke etc. Being unable to do much just makes me feel lazy, guilty and more depressed & useless counteracting any good the meds might do. I dread telling the GP. She won't be happy!!! The anti anxiety meds are not going to work during the day because they will just make me dopey so I can't function. Summer is such a bad time for me & I've got into negative patterns trying to cope with my fears in the past that spending another year even less able to function due to meds is going to make the pattern even harder to overcome. Maybe I'm wrong and sticking with the proper dose a bit longer would have given me the help I need but there is no guarantee & I can't wait any longer for the benefit to kick in & side effects to drop. I didn't have the energy to enjoy my grandkids like I wanted. I'm dreading the next few hot days!!!!

  2. blondguy
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    28 December 2019 in reply to Elizabeth CP

    Hello Elizabeth

    I hope you have had a good Christmas Day

    Just sharing my own history when I had problems getting on the AD's....even a tiny dose...That was in 1996 and my female GP was very blunt after me refusing meds for nearly 10 years...She just came out and told me that I will lose my job.....my house...and my personal relationships....That did it...I filled the script that day...It wasnt easy

    I went back 3 weeks later saying that I have lost 'my spark' and felt somewhat 'flat' after starting the meds. My female GP once again was blunt and said "you will get used to them...keep going" Oh my god! So I did what she said and a few weeks later my anxiety was 90% gone and I could function again....properly...

    I hope this hasnt been boring...I am happy to say that I am still on the same low dose SSRI for 23 years :-)

    I havent been on the air for about 10 days after having food poisoning from eating a very well known brand of fresh vacuum sealed butterfly chicken with lemon and garlic sauce that is available in all major supermarkets nationally... Ugh!

    More Importantly Elizabeth....I wish you and your family all the very best for 2020...Thats all that matters

    I really hope you can find the peace you deserve by persevering with the meds...You have everything to gain and nothing to lose :-)

    my kindest always

    Paul

  3. Elizabeth CP
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    29 December 2019 in reply to blondguy

    Thanks Paul, Hope you've recovered from the food poisoning. Not fun We got food poisoning on our honeymoon. Not good, Couldn't even hug each other for ages after without extreme stomach pain!!!

    I had tried the initial low dose for 5 weeks before seeing the GP as the psych had cancelled my appointment. I was just coping after the 5 weeks but still struggling with the tiredness which was worse than when I started. Some of the other side effects had eased but any change in mood seemed to be a reflection of what was happening rather than the meds. High stress & tiredness still left me feeling terrible (eg when I had to take hsb to hospital & were stuck in emergency for ages while doctors & nurses tried to help him Returned home very late after he was finally deemed safe to go home but with instructions to come back if he got worse again) Also anything related to fires triggers extreme anxiety. When I was more rested and productive I felt OK. I was hoping to come off the meds because I didn't think they were working . Instead she decided to double the dose saying I wasn't on high enough dose to help. I just can't cope with more weeks feeling like I am. I guess I'm scared of meds because I've seen the effect on my son were they would keep increasing meds & then giving more meds to counteract the side effects & he was so doped out he couldn't function. At one point he became angry at the MH system& stopped taking anything cold turkey. Not advisable. but once he was off them & through the withdrawal period he was able to function again & returned to work which had been impossible while on the meds for several years!!!

    I'm prepared to stay on the tiny dose for a while longer but I really need to have my head clear so I can go through the exposure therapy. I feel that is my only hope to learn to cope with the Australian summer.

    I hope you have a good year in 2020

  4. blondguy
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    30 December 2019 in reply to Elizabeth CP

    Hey Elizabeth

    Thankyou so much for your heartfelt understanding and best wishes too :-)

    Like yourself I would love to come off the meds...yet I have become accustomed to taking them and they have given me my life back.....and stopped the continual over thinking I used to do. I know everyone is different Elizabeth for sure and we all have a different set of symptoms to deal with

    After 37 years of various anxiety awful anxiety symptoms I have learned one thing that I keep hearing from health professionals everywhere...(not Google...that does more harm than good)

    • If our symptoms (of whatever) begin to impede on our day to day ability to function effectively then meds and counselling will reduce any further harmful impact on our mental or physiological well being...hypertension...etc

    That aside....I do understand the fear of meds Elizabeth...I had it for 7 years and refused any meds as I also wanted my clarity back. I get it. Good on your son for being fortunate not to require them anymore

    I always look forward to reading your wise and articulate posts Elizabeth. You have been on these forums for a long time and have helped many people by doing so. You are a very strong and caring person

    My very best for a some well deserved happiness in 2020 :-)

    Paul

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  5. Elizabeth CP
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    1 January 2020 in reply to blondguy

    Thanks Paul, I totally agree with your statement If our symptoms (of whatever) begin to impede on our day to day ability to function effectively then meds and counselling will reduce any further harmful impact on our mental or physiological well being...hypertension...etc. We each have a responsibility to look after our own health (mental & physical) or we will suffer the consequences.In my husband's case he needs to take the advice given to him by therapists including exercises & other strategies for eating etc to minimise the deterioration & risk of adverse consequences. He also needs to take medication. One of which increased the chance of serious hear problems in the future but without the meds the risk of a life threatening problem is very high. Iknow people who have MH issues & need the medication to be able to function. In my case the medication seems to make it harder to do the other strategies that help deal with my MH problems.

    Unfortunately my son is back on medications. He did well for a long time until he was married &very serious stresses emerged. His wife is not good for him in many ways but rather than address the cause of the problems he is just put on high doses of meds which stop him functioning.

    I saw my GP Monday.I was worried about her reaction when I told her I'd reduced the dosage on the meds but she was fine.I will stick with the low dose for the time being & will take sleeping tablets when I can't sleep due to heat or my anxiety. It is too hard to cope once I'm really over tired.

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  6. Doolhof
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    1 January 2020 in reply to Elizabeth CP

    Hi Elizabeth, Paul, Croix and all Reading,

    Happy New Year to you all. I have been doing a lot of thinking and have been telling myself I don't want to have the same reactions to incidents that happen around me. Last year was a bit of a shocker in many ways. I don't want to do the same thigs this year.

    Elizabeth, I hope the lower dose of the medication works well for you. My husband reduced his medication and seems a lot better for it.

    I don't think this horrible heat, the tragic fires and the continual dry is helping anyone feel good about life. Especially not when it is in your face all the time and when you are a sensitive person.

    All the best, cheers from Dools

  7. blondguy
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    1 January 2020 in reply to Elizabeth CP

    Hi Elizabeth and a wave to Dools above

    Just sharing with you (as you have done above) Like yourself I take a low dose SSRI and when required a benzo before bed to ensure quality sleep. The benzo group of meds seem to be criticized nowadays only because of the minority that abuse them

    A quality sleep is crucial so we are 'stronger' the next day and if a low dose of a benzo is necessary and taken responsibly then its for our benefit. (Subject to our own symptoms and anxiety levels of course)

    Im sorry that you see your son being back on medication as 'unfortunate' Being back on the meds may provide him with a greater sense of peace in his life

    just my 2cents worth if thats okay Elizabeth :-)

    my kindest always

    Paul

  8. Doolhof
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    2 January 2020 in reply to blondguy

    Hi Elizabeth, Paul and All,

    Other people's reactions to those taking anti depressant medication in my experience can range from:

    - what are you taking that for, just pray harder to why aren't you better, you have been taking those for a week already haven't you?

    I guess the problem is our chemical makeup is so different. It is hard for the Drs to work out what is best for each person. Throw in our own characteristics and you have an interesting base to work with.

    I'm also wondering if your "unfortunately" regarding your son taking medication is because he is depressed again and not so much the fact he has to take medication.

    For me, medication to help my depression has been a roller coaster ride. It seems to work for a while then for no known reason it helps me go into a tail spin, or maybe it is life's circumstances that do that.

    Either way, mental health issues can be confusing for all involved and any help we can receive is beneficial. So if medication works, go for it. Sometimes I just wish that something would work!

    Paul, you are also lucky that medications help you to sleep! My Dr has tried so many on me, some do the opposite and keep me awake all night.

    Cheers from Dools

  9. Elizabeth CP
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    2 January 2020 in reply to Doolhof
    I realize my son needs some medication for his depression. My issue is the way Dr's increase the medication and add more meds to fix him rather than looking at what is triggering the relapses. He needs serious help to manage his life better so he doesn't go downhill. He needs stable accomodation. Having to keep moving with nowhere to go is not good. Him &his wife need help to manage their finances. His wife spends money & goes into debt all the time so they can't pay the bills. My son then becomes so stresses he ends up suididal then in hospital loses his job because he can't function on the high dose of meds & becomes worse. I can't do anything because his wife doesn't want me involved.
  10. Doolhof
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    2 January 2020 in reply to Elizabeth CP

    Hi Elizabeth,

    Thanks for explaining the situation more. It would be wonderful if there was a more collective form of assisting, treating and helping people suffering from mental health issues.

    Yes, medication does help, but as you mentioned it doesn't assist with the underlying issues.

    It can be difficult finding the help and assistance we need to cover all aspects of what is happening in our lives. If people are objecting to assistance for some reason, that makes it harder still to assist people.

    I really do hope your son manages to find some way through this maze and finds help and assistance for the various aspects of his life that are adding to his issues.

    Regards from Dools

  11. Elizabeth CP
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    8 January 2020 in reply to Doolhof

    Thanks Dools, Sorry I didn't reply earlier. I'm having to leave my son's issues as I can't do much because his wife doesn't want me involved & refuses to listen to advice from anyone unless they agree with her!!!!

    I'm struggling because of the fires. Everywhere you go you are confronted with talk or images of them. This leaves me exhausted trying to keep control of my feelings. I had to race out of church on Sunday when something was said in the opening prayer which triggered a very intense reaction. Stood in an empty hallway facing the wall crying until I calmed own but couldn't go back in. Felt embarrassed. Noone else would have reacted like me but it brought back the very negative feelings I had as a child and I felt so bad for all the children currently going through what I did. I also feel guilty & selfish. I have no right to feel this way because I'm not affected. Even worse, I'm not doing anything to help so I'm useless & bad.

  12. blondguy
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    13 January 2020 in reply to Elizabeth CP

    Hi Elizabeth(and a wave of thanks to Dools)

    I just read your post on January 2 and it would be a concern when the doctors are increasing your sons medication for sure. They are only doing so to treat his current symptoms and as you mentioned he is in a difficult situation with your daughter in law

    There is only so much you can do as the caring mum you are Elizabeth. I do understand your son's situation as I have been in the same boat and it can be a toxic place to be in, especially if we present with the symptoms your son has

    I dont know what your son thinks about decision making....It hasnt been one of my strong points. Whether its your son or myself....If we are in a difficult/toxic relationship our first priority is to remove ourselves from it to protect our health and well being...all other considerations are secondary

    Just from what you have posted it seems that your son has no intention of removing himself from his environment...(please correct me if I have misinterpreted your sons situation)

    I feel for you with what happened at church Elizabeth.I have also raced out of various situations when I was oversensitised prior to starting my meds in 1996. These horrible wildfires can leave us vulnerable when we already are already going through a rough time. You mentioned that no one would have reacted like you did. My sister (in her 50's) did the same as yourself just a few days ago when she was in church during a service

    please be gentle to yourself

    Paul

  13. Elizabeth CP
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    14 January 2020 in reply to blondguy

    Thanks Paul, I try to avoid getting too involved with my son's situation at the moment as I can't do anything. I feel guilty because I rarely see him or the grandchildren.

    I'm struggling with bad fatigue even after a decent nights sleep. I've given up the medication completely because it wasn't helping. Haven't told the GP!!! See her tomorrow for an unrelated test result but may not mention the tablets so I don't have to explain myself. If the psychiatrist expected me to stick to the meds he should have been available to talk to instead of cancelling appointments for 4 months.

    I saw the psychologist yesterday who does exposure therapy. The session seemed to finish suddenly after he'd tried to tell me what to do/not do but I didn't really understand how to apply what he said in my situation and there was no chance to clarify.

    Sunday I had tried to talk to my husband to explain how I felt &get advice/suggestions. Instead all he kept saying was the meds make you tired so just stop them. I know stopping the meds even if it helps is not going to fix all my problems so I feel I have nowhere to turn to get out of my situation. I'm tired, unmotivated, feel lazy & guilty for not doing enough now & in the path. . It is my fault I'm depressed & anxious because I'm not doing what I need to help myself. I'm confused. Do I push myself to exercise & get things done or is that going to escalate the tiredness & stress & make things worse.

    Hot weather, smoke, high fire danger are really affecting me along with the constant talk of bushfires bringing back horrible memories of when we were caught in a bushfire.

  14. blondguy
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    15 January 2020 in reply to Elizabeth CP

    Hi Elizabeth

    You are doing everything possible at this time...Thats all you can do. I hear you loud and clear about the fires...the smoke and the bushfires....This is an mentally exhausting time to be going through

    With all respect for your husbands point of view....Recovery from these awful anxious and depressive symptoms do take determination....patience and a strong will to heal. Exercise is great except it doesnt treat our symptoms. I used to run every day for years in the 1980's and I felt great physically yet the anxiety didnt go away....(just for me that is!) Forgive me Elizabeth...can I ask if your anxiety has a negative impact on your day to day well being? Please ignore the question if I have asked the wrong question...Just trying to help

    my kind thoughts always

    Paul

  15. Elizabeth CP
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    15 January 2020 in reply to blondguy

    Thank you Paul, Wanting to get better is fine but knowing what to do is hard as there are no clear answers. The anxiety was much worse on the higher dose of meds. It really affected me. Now the depression is worse except when there are bad triggers which leave me reacting irrationally. I have headaches, neck pain & jaw pain from the tension due to the anxiety. Lately the tiredness &/or depression are affecting my motivation and ability to concentrate.I put things off because they're too hard but that leaves me worrying about them. Things I normally enjoy seem an effort.

  16. Elizabeth CP
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    15 January 2020 in reply to Elizabeth CP
    Just a brief update. Didn't sleep much last night due to heat, smoke & just feeling depressed anxious etc. Husband was struggling all night coughing & choking. He's got worse over the last few days. This morning he attempted to put fluid in through his PEG tube as he didn't feel able to eat normally. It came straight up from his stomach. Took him to ED which was full probably due to smoke related health issues. He's been admitted after having various tests. Doctor wanting to ind out about tests done several years ago & then decide if there is anything else that can be done. I think we exhausted all options previously but maybe someone can come up with something. On the positive I can sleep undisturbed tonight. Hopefully he's home soon but past history doesn't raise my hope much. Need to go to bed & hopefully sleep.
  17. Croix
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    15 January 2020 in reply to Elizabeth CP

    Dear Elizabeth~

    I do hope you manage to get a couple of nights unbroken sleep. An additional benefit I'd imagine is you can set the house temperature to what is comfortable for you while you husband is away getting those tests.

    You asked a serious question "It is my fault I'm depressed & anxious because I'm not doing what I need to help myself. I'm confused. Do I push ... "

    I think I'd turn that around a bit. It simply may not be possible for you to do more than you are now, and by judging yourself by "normal" standards you are setting yourself up for feelings of failure. A more reasonable yardstick to judge you behavior and accomplishments would give you a fair number of victories, even incite admiration.

    If there was one thing I'd notice -and admittedly I may not have all the facts - is that you may not be proactive enough with your medical team. A good example being if you are not understanding and benefiting from your psych's choice of therapy (exposure) then pointing this out and requesting an alternative approach might not only give you more of a sense of control but may actually lead to a therapy that is productive.

    Could I suggest you do tell your GP abut ceasing the meds? By now he or she would be sufficiently acquainted with you to know you will not do things just on a whim, but will have solid reasons for your actions. For the GP to have an accurate idea of your intake and everything else may lead to a more appropriate set of treatments.

    Croix

  18. Elizabeth CP
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    16 January 2020 in reply to Croix

    Thanks Croix for your comments.

    You mentioned being proactive with the medical team. My psychiatrist prescribed the meds last November. He'd tried to encourage me to try meds ever since I saw him. I was referred to him after trying several different ADs by my GP (not my current GP) The side effects were intolerable. He recommended a different AD which was worse than ever so I stopped it after speaking to my GP. Had 3 months before appointments with psych so couldn't wait for him. After that I refused all ADs until experiencing a significant increase in symptoms on the back of extreme stress & a long period of physical illness leaving me extremely tired & unable to cope with the stress I was experiencing. I expected to see the psych in 4 weeks time but he cancelled the appointment & next appointment not available to end of Feb. 4 mths between appointments. I was then forced to speak to my GP for advice. I'd not previously spoken to her about MH issues so she had no idea what was happening. She was not my GP when I tried other ADs so she is just trying to fit in with what she thinks the psych wants but has had no contact with him since is not available for contact.

    The exposure therapy I feel I need although this is a terrible time for it. I started August last year but then stopped because he seemed to get sidetracked. I then restarted on advice from the psychiatrist because the media was putting up very confronting images and messages that were impossible to avoid and had triggered an escalation in my PTSD symptoms. The first session back before Christmas was OK although triggered a lot of memories but some of that I thought was positive because it made me realize how much I was affected even about things I had never discussed with anyone. The last session I went hoping to explain some of the other things I'd realized but he stopped me part way to talk about thinks he thought I needed to understand but it led to too much sidetracking & him having total control of the session. When the session finished I'd had no time to explain my concerns & left confused & unsure what I should be doing. .

    I need to write things down in point form with a list of events which have affected me. The fire I was caught in was the catalyst for the PTSD but this has impacted the way I have perceived subsequent fires & how they have affected me. I've noticed each summer over the last few years I've become worse avoiding most activities I normally enjoy which impacts on my MH.

  19. Croix
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    16 January 2020 in reply to Elizabeth CP

    Dear Elizabeth~

    4 months between appointments for your psychiatrist strikes me as terrible, and not being available to talk to your GP means you have a 'collection' of professionals, not a team at all -something that is very necessary.

    Writing everything down in your own time sounds an excellent idea, one I've used with success.

    I still have the feeling your psychologist? with the exposure therapy still needs more direction, your leaving a session without a clear idea of 'homework' simply wastes time that could be productive.

    Did you manage to get any better rest?

    Croix

  20. Elizabeth CP
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    16 January 2020 in reply to Croix

    Thanks Croix, I started the medication thinking I had 4 weeks (not 4 months) to try it before being reviewed by the psych so was VERY unhappy when that appointment was cancelled leaving me with only the GP to talk to. Since she didn't know my history with ADs that wasn't satisfactory. I have been seeing a different psychologist who has no interaction with any of the other health professionals. He isn't an expert in exposure therapy which is why I agreed to see the one referred by the psychiatrist. I will stick with the original psychologist for no matter what happens with other professionals because he understands me & my situation. He focuses on all the other stresses in my life as a carer & other issues that come up. He has met with my husband and helped him understand what is happening with me and helped us come up with solutions to problems we were having.

    I used sleeping tablets last night & will do the same tonight. I'm too uptight to sleep properly otherwise. Today has been busy with several appointments. I saw the GP but didn't tell her I'd stopped taking the tablets. I just couldn't face it at the time. I got results of some tests which while not terrible showed that there has been a decline since the last test. This is a little scary as it puts me at increased risk of injuries & other problems in the next few years. Something I can't afford while I'm caring for my husband. I will do what I can to slow the progression but it is very limited. My husband is going to be in hospital for some time. My visit today while productive left me feeling shattered. I had to be very assertive to get thing done including reminding them of the amount of times he almost died last time he was in that hospital. They at least saw my concern was genuine and acted on it. I then had to push hard to get food for him. He had a drip but no nutrition for 2 days. I wasn't happy so I rang his private speech pathologist who rang the hospital & was able to get through to the right people to get what he needed. While I was successful in getting what he needed the effort left me feeling emotionally drained. I'm feeling very isolated. At his request I texted a few family members to let them know he's in hospital. The only replies have been asking me to send him their love & best wishes. It was the same last time people only care about him!!!

    Sorry I'm grumbling. This has come at a bad timeon top of everything else

  21. blondguy
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    16 January 2020 in reply to Elizabeth CP

    Hi Elizabeth

    Croix has made an excellent point that 'exposure therapy' may require some more 'direction' at this time

    I understand that your husband is not in a good place...You mentioned that you sought his thoughts on whether or not medication may be helpful to you and he mentioned it wasnt a good idea as you become tired with them

    You mentioned an interesting point..."knowing what to do is hard as there are no clear answers" Croix did touch on this when he mentioned 4 months without an appointment is terrible.

    "Recovery from these awful anxious and depressive symptoms do take determination....patience and a strong will to heal" Its not just 'wanting to get better'...Its a way for us to find some peace in our lives...and yes its hard work

    You are a super caring person to your husband, son and family. I do hope you can increase the frequency of your visits to your GP. You have everything to gain and nothing to lose by doing so

    With all the fires and smoke I do hope you have had some rest and time for yourself

    my kindest thoughts always

    Paul

  22. Elizabeth CP
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    17 January 2020 in reply to blondguy

    Thanks Paul, I agree about providing direction for the 'exposure therapy'. The only way I see that happening is by me writing things down so he has a clear picture of what the issues are & what i need to acheive from the therapy. Hopefully this will reduce the risk of being left hanging at the end of a session not knowing what to do and feeling confused.

    My GP is about to go on holiday so can't see her for a while. I guess I'll have to tell he sometime that I've stopped the medication but I 'm not up to that discussion at the moment. Dealing with my husband's situation takes so much emotional energy. Because of his history I tend to go into catastrophic thinking patterns in these situations. Having to emphasize the things which have gone wrong in the past (eg almost dying last time he was in hospital) makes this more real.

    On one hand when my husband is in hospital I should have time for myself but instead I find I'm so anxious and stressed I can't focus & waste time meaning more time to think & stress.

  23. Elizabeth CP
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    18 January 2020 in reply to Elizabeth CP

    I'm not coping very well. Really struggled when I visited the hospital today. Left early because I couldn't cope. Seeing him get weaker each day is hard. They are keeping him hydrated on a drip but he can't get enough nutrition. He's having less than half the amount of nutrition he needs which means his muscles are getting weaker so his ability to stop food going into his lungs is decreasing. Spoke to the doctor but she has no idea what to do until he is in intensive care & needing life support by which time it will be too late I'll have to ask for machines to be turned off.

    My mind keeps going down very negative pathways. I feel hopeless & unable to muster motivation to care for myself.

  24. blondguy
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    18 January 2020 in reply to Elizabeth CP

    No worries at all Elizabeth...I can feel the pain you are going through in your posts...

    Can I ask if your husband is having the necessary nutrition through his PEG tube?

    you answered your own question when you mentioned "On one hand when my husband is in hospital I should have time for myself but instead I find I'm so anxious and stressed I can't focus & waste time meaning more time to think & stress"

    Is there anyone else that can help you have some respite as the main carer?

    I also used to catastrophise like yourself and it is an awful set of feelings to experience

    When we are a mentally exhausted carer it is crucial we engage external support not just for ourselves but to provide better care to our loved one too. I hope you can help yourself by having a chat with a kind after hours volunteer below. I have called them prior to my dad passing in 2016 and they are very friendly

    Sane Australia 1800 187 263......24/7

    Beyond Blue Support 1300 22 4636.....24/7

    my kindest thoughts for you and your husband Elizabeth

    Paul

  25. Elizabeth CP
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    19 January 2020 in reply to blondguy

    Thanks Paul.

    The problem I have is other people don't understand which is why I have to be so involved with ensuring he gets the right treatment in hospital so I can't delagate to someone else.

    Every time he goes to hospital they get speech involved because of his swallowing. In his case that is just a side track avoiding the real problem. He went into hospital because he was experiencing severe reflux even using the PEG & was in danger of having that go into his airways causing pneumonia & possibly death. This has happened several times in the past so is a real issue. Even with the PEG feeds the food is coming up from his stomach & choking him. He has to put the food through the PEG so slowly to stop the reflux that he is unable to get enough nutrition. He is having less than half the minimum amount he needs. Unfortunately having inadaquate nutrition leaves him even weaker so the weak muscles in his digestive system stop working completely making him even more vulnerable.

    I tried calling lifeline yesterday but it didn't help. The person listen & acknowledged that things were difficult but it felt like I was left to dwell on the problems with no attempt to help me find a way out so I felt worse.

  26. Croix
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    20 January 2020 in reply to Elizabeth CP

    Dear Elizabeth~

    You have explained here very clearly the problem your husband has over lack of nutrition, and as things stand I'm not surprised you left early as it is beyond anyone's coping skills.

    I'm probably insulting you be asking this question, however just becuse the current treating physician has no idea what to do, does that mean other specialists would be the same? You have an inventive mind, determination and formidable skills, is it possible to find an alternative physician that has met this problem before?

    Lifeline is a fine organization, and they are designed basically for crisis support. They may not be idea in all circumstances. I beleive in the Suicide Call Back Service (1300 659 467) - which I've probably gone on about before - as they are not limited to one call, and you can discuss matters with the same (qualified) therapist without repeating yourself on several occasions.

    While they may not be able to do anything about your husband's medical problems they may be able to support you enough to both look after yourself and cope better.

    Croix

  27. Elizabeth CP
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    21 January 2020 in reply to Croix

    Thanks Croix, I rang Beyond Blue & found the phone counselor much more helpful. As you say they can't fix the problem but helped by talking through options to help me cope better. Still struggling to follow through effectively but trying. I never rang the Suicide call back service as I wasn't suicidal.

    The doctors on the ward are junior doctors. There is a consultant overseeing them but h would be trained in general medicine & have a good knowledge of the usual issues people present with. They are supposed to be contacting the gastro team which is based at an affiliated hospital but they are advising what tests to do over the phone & I can't speak to them. He was supposed to have tests yesterday but the first test was delayed so there was no time to do the 2nd test which is the more relevant one.

    On Sunday I found he wasn't having the medication he takes regularly to enable the digestive system to work. The doctors had charted it wrongly. I was very angry as I had spoke to doctors & nurses when he came in & later on about the medication so there was no excuse. Without this medication it is no wonder he was getting worse. I demanded a complaint form I was rather loud and at the nurses station so all staff in the vicinity knew I was furious. I spoke to the person in charge who promised to follow up but I went home & completed the formal complaints form & submitted it online. Now he is on the correct medication he is improving but we're still no closer to finding a solution to stopping the problem which led to his admission. Once he is discharged I will make an appointment to see his private gastro to come up with a long term plan. I will also try to find a specialised dietition to see if we can find a radical approach to use when things go wrong rather than going to hospital where he just ends up sicker before they give up & discharge him.

    I feel like I need a break to clear my mind so I can cope but I can't do this while I have to keep checking up to make sure the hospital staff are doing their job.

  28. blondguy
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    21 January 2020 in reply to Elizabeth CP

    Hello Elizabeth

    I respect the care and devotion you have pertaining to your husbands health

    You are a kind and intelligent individual. I understand that you dont like the meds you have been prescribed yet your own well being is at risk here by not seeking the frequent support or medication required as you have mentioned above

    We all need a 'plan B' when the going gets tough

    Paul

  29. Croix
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    21 January 2020 in reply to Elizabeth CP

    Dear Elizabeth~

    You have most definitely had wins in your interactions and things sound -thanks to you -to be heading down a more informed and well maintained path. It comes at a cost to you, so coping skills need to be at there very best.

    Now you have things on a more even keel is there anyone who can just check up daily his meds are in order and being taken -things that would give you a little more time without requiring your background knowledge?

    Croix

  30. Elizabeth CP
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    21 January 2020 in reply to blondguy

    Thanks Croix & Paul,

    Paul I know that for some people medications are life savers. I tried a number of meds under a previous GP. She then referred me to the psych because she had exhausted all the medications she thought might work. The psych prescribed a different one which was worse than ever. This last attempt at trying meds has made me convinced they are not for me as they make feel feel worse not better. I am seeking support from psychologists & have tried to do what I can to get better. Unfortunately the level of stress on me lately has made that really difficult & confusing knowing what is right at this time. I am looking for Plan B

    Croix I had a call from one of the doctors to update me on the plans for my husband. Basically they've decided there is nothing left to do apart from giving him an extra medication. I feel that the quicker he comes home the better so he can recover properly. I will make an appointment with a specialist ASAP (I have a referral already for him) to see if there is anything available. Getting that advice from the hospital doctors has proved impossible. I will also try the find another health professional with particular expertise to give us alternatives to assist him at home when things are really bad rather than going to hospital where he goes downhill because they don't understand. As for the extra medication I will speak to his GP & try to get him off it because I can't see any benefits The doctor couldn't give me a good reason for it.

    I have asked Carers Victoria for counselling in the hope I can get some ideas to help me cope better as a carer. I need to find a way to get a complete break without having to go through immense stress to get there. need to get him home first & settled. Not sure how I'll go particularly at the moment when I find it so hard to focus or get motivated on anything.

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