Feeling down due to fatigue & undiagnosed health issues

[Elizabeth CP]

I haven't been using the forums much apart from a couple of responses to others posts. I stopped as I was too busy & trying to keep up with the forums was becoming too stressful. In September My husband went to Europe which was great although tiring due to the pace of the tour we did. Unfortunately a few days before returning home I fell heavily on concrete steps hurting my right side. I continued on relying on icepacks to manage the pain. I couldn't sleep because of the pain when lying down. The last day I came down with a bad cold which developed into a chest infection later on. The pain eased after 6 weeks & I recovered from the chest infection but have ongoing problems with fatigue & abdominal discomfort. My GP arranged pathology tests. The blood tests are normal but urine isn't. Today I was sent for a ultrasound of kidneys & bladder. Next week I have a gastroscopy & colonoscopy. My stress levels seem to be escalating out of proportion each time I see the GP & get sent for more tests. Prior to my accident my mental health issues were settling down but the last week it is much worse. I have lost my temper a few times in the last week without much provocation. This is not normal for me. I have been on a diet for several months but I am now finding it really hard to stick to it I just want to go & eat food I know will make me feel worse. The diet is a healthy one which I normally find easy to stick to because the food is satisfying.

I just want to get back on track & feel in control of my life & not feel so stressed & down. I also feel guilty for feeling this way because There is no confirmation of a serious illness.

[blondguy]

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

[Elizabeth CP]

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.

[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.

[blondguy]

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

[Elizabeth CP]

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.

[Croix]

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

[Elizabeth CP]

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.

[blondguy]

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

[Croix]

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

[Elizabeth CP]

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.