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.

[Doolhof]

Hi Elizabeth,

know you have already looked at different avenues, but is there some organisation that can offer you even a couple of hours respite a week so you can go out and do something for yourself?

The walk you want to do with the Carers group, are the people running that able to offer you some help and support in some way?

Do you have a shower chair for your husband? I recall working in Aged Care and needing to be very careful when assisting people with a shower.

I recall the first time I had to shower a man. At the end of it, he said to me "that is the quickest darn shower I have ever had in my life" only he didn't use the word darn!

I do so hope your husband is able to feed better with less pain as the time goes on Elizabeth. Wish we had the answers for you!

Best wishes from Dools

[Elizabeth CP]

Hi Dools,

I rang Carers Victoria yesterday to get advice but no one was available to speak. Still waiting for a call back. Several years ago we had someone come to give me some respite. It was a disaster. Neither I or my husband felt comfortable with the carer.

We have a shower chair but my husband prefers to stand as getting up & down from chair is too hard. The showering went OK yesterday. It is just that I have to be ready to help when he wants so my day seems to be cut up fitting in with his needs. Last night he was up & down to the toilet due to some medications. Will cut them back toiday & then discuss with GP tomorrow. This meant I couldn't get to sleep for hours. He is awake now & has had morning painkillers but too tired to get up. Once again there won't be enough time in the day to fit in enough feeds.

I've never done this walk so unsure what it will be like. I think they may have guests from different organisations who may be able to assist but unsure how this works or who will be coming so don't know if it will be helpful.

I wish I could be less emotionally fragile. The smallest pettiest things seem to really upset me.

[Croix]

Dear Elizabeth~

I'm not sure about petty things getting a reaction from you. Everything you have mentioned here is pretty major and the fact you are actually coping is pretty awesome.

It is a frightening and emotion ridden time is, and you are riding it out and functioning, doing what needs doing.

I hope the carer's walk goes well (no need to complete it all if it is a strain) and you meet others who understand and maybe even have some hints

Croix

[Elizabeth CP]

ThanksCroix, I feel like I'm over emotional & over-reactive at the moment. I went on the walk. Unfortunately weather was bad so the walk was very short & limited to made patha in park to avoid flooded areas. The others were in very different situations to me but it was nice to get out. We stopped in a cafe for a drink afterwards which was nice.

Saw the GP today with husband. I became upset trying to explain what was happening She was horrified by the medication prescribed so we had to explain why which for me brought back all the difficulties in the hospital. I found it hard to speak openly as my husband has been complaining that I don't understand when I've tried to encourage him to reduce medication. She confirmed my concerns (although I didn't feel able to mention them myself without my husband getting upset with me) We go back next week as she wants & she hopes to further reduce the dangerous medications. It feels like walking a tightrope trying to manage my husband's pain but trying to limit the damage done by the painkillers

[Doolhof]

Hi Elizabeth,

I feel very emotional just reading what you are needing to do to assist your husband! I worked in aged care, had one shift a day and that was enough when it came to being responsible for the health and well-being of other people.

I am in awe of what you are managing to do. It sounds like the trip to the Dr was very beneficial even if your husband did feel a bit upset here and there. It is important to get the medication sorted and for his Dr to know what is going on.

My father came out of hospital a few years ago after an operation and stayed with family for a week before returning home as his medication was quite confusing. A local Dr was able to help him sort it all out. Hopefully the Dr will be able to do the same for your husband.

Have you been to have a chat with someone yourself Elizabeth? My GP is a lovely compassionate man and listens to me a lot! He offers support and ideas. Hope you can have some support for yourself and a listening ear.

Shame about the weather and the walk. I had a walk in 2 different shopping centres today due to rain.

Hoping you can get things sorted Elizabeth!

Cheers from Dools

[Croix]

Dear Elizabeth~

When things are overwhelming and we are responsible for the welfare of the one we love then yes, we do get emotional and coping gets harder. I used to get upset simply giving my first wife diabetic needles, and I suspect they are not in the same class as the drugs you are forced to deal with.

Having the GP to help sort it all out is a bonus, I'm glad you thought to take your husband to see her.

The carers' walk sounded as if it was a good thing, even if you walked less than you expected. Do you plan to catch up with any of them again?

Croix

[Elizabeth CP]

Thanks Dools & Croix, I don't think I'm doing very well. It is not physically difficult. It is just the emotional side which I'm struggling with. My husband has complained a few times because I don't understand what he is going through. Yesterday he go upset as he wanted to tell me something when I was on the phone but I didn't listen to him. It was an intense call where I was needing to really concentrate to make sure I explained everything clearly. Unfortunately my husband wanted me to tell the person something else but I couldn't listen to my husband while discussing things on the phone. My husband's speech is affected so he is very hard to understand. I became really upset by my husbands complaint. I know I need to be more understanding but his complaint made me feel useless.

I will try to attend the walk again. It is run monthly.

We had planned a holiday early June but my husband won't be fit to travel. I still need to cancel everything & try to get travel insurance to pay us back. I find that process extremely stressful & i am still waiting for the GP to write a letter. We have to go back for a review on Monday & she said she will do it then. I found a government funded organisation that can fund some repite so I can go away on my own. I'm debating whether to do this. I feel guilty leaving him so soon & going on my own. I'm worried about people thinking I'm terrible being so selfish. Is it worth the effort as I will need to prepare a lot to ensure my husband can manage without me. It will be a rush & it is hard to know just how my husband will be at that time.

[Croix]

Dear Elizabeth~

I've had exactly the same problem on the phone - from both sides, me talking and other times me wanting to add something. It is a difficult thing to navigate and if I'm pressed can be less than tolerant. You know the answer as well as me, tell the most obliging party to wait a moment, however in real life it does not always seem possible:( Ah Well.

With the respite the fact you found the service shows how capable you are. Of course you should go - at every opportunity! It is not a question of people thinking you selfish if you went- more a question of them thinking you need your xxxx xxxx if you do not (I don't think I'm allowed to say anything that disrespectful here:)

There is a line between loved-one and patient, something very hard to draw. Guilt seems to be a common result. you are doing a mighty job.

How can a walk be run monthly?

Croix

[Elizabeth CP]

The walk is run by a group for carers & they provide a staff member to run the walk & they take time to talk to attendees to see how they are managing & give advice or encouragement if needed. The walk is in a public park so anyone can walk any day but walking with the group is once a month. The walk acts like an informal meeting allowing carers to meet other carers & professional who can give advice.

My husband is slowly improving. My son invited us for mothers day but my husband wouldn't have coped with the trip or sitting on their seats. I suggested they come to my place so they brought the food to cook here & my husband was able to enjoy their company in comfort. He managed to eat a very small amount without & issues which is a big improvement. It was nice to have them around but I wouldn't have coped with all of my children & families. Hopefully we will get together next weekend.

[Doolhof]

Hi Elizabeth,

It is wonderful some of the family were able to go to your place and were prepared to bring the food and cook it by the sounds of things. Good to know your husband was able to eat something too!

If you are able to organise respite care for your husband a holiday by yourself may be just what you need right now. Hopefully after a break you will return home refreshed and reinvigorated and better able to cope with everything.

A bit of time away does us all good. Your husband may not agree to it at first, he may be fearful, I can not begin to understand how he must be feeling due to his health and increased vulnerability.

You both need to be cared for right now and have your needs accommodated.

Hopefully you will be able to work something out.

Cheers from Dools