@Linda Hi Linda - My heart goes out to you and your daughter, it is very tuff but you are doing a wonderful job. I am in Perth, Canning Vale. My daughter is also housebound, she is 24 now and been living with ME/CFS now for 10 years also. Wanted to let you know that there is a Peer Support Meeting this week at ME/CFS Lyme Association in Nedlands (Niche Centre) Sunday at 1pm if your interested. I am a new volunteer there and hope to be there on Sunday as well. You can message me by connecting with Emerge Australia if you want to text direct.

@Ellis-MUM
Hi Jenny

Sorry you are so burnt out without any respite. I can relate, as I have no family support either to care for my son. It's worth checking out the Carer Gateway, but in my experience the services are limited and we are not often considered a high priority.

You've probably explored all the avenues already, but just in case- did you know that you can get Medicare rebates for up to 5 sessions on the Chronic Disease Management Plan? (what used to be called the Enhanced Primary Care plan) It could help you to get physio appointments. hhtps://www1.health.gov.au/internet/main/publishing.nsf/Content/mbsprimarycare-chronicdiseasemanagement

In the longer term, you really to find need a doctor who will recognise that the illness isn't going away. Very disappointing that your pediatrician won't do that, though perhaps not too surprising because of your son's age. Perhaps hed be open to reading some research / the pediatric guidelines to help him rethink?

@Vicki-Murtagh I know this response is a little late, but I have never been on the carer page. My wife is my carer and I feel guilty that her job is now caring for me. We have also had similar discussions and I often wonder how she can do it. So, my wife is my carer and qualifies for carer’s payment from Centrelink because that is a role she wants. To be a full time carer, you don’t have to be on call 24/7. Once you get the NDIS bullshit sorted, I would be looking for Support Worker funding. That way you can still be his carer (which I find comforting having my wife), but you can still focus on self care. I have had a SW take me out for coffee so my wife can have an opportunity to relax or a SW just stay at home with with me while my wife goes and gets a massage or pedicure or some form of self care. I have had a SW drive me to appointments so my wife can have time. I personally wouldn’t feel comfortable with a professional carer (just a personal thing), but short bursts of SW time works for us.

@Vicki-Murtagh Hey Vicky, you've really nailed what its like. I particularly empathize with the constant letting go. I think we would deal with CFS so much better if it just stayed at one level that we could adjust our lives to and move on. It is a cruel torture in some ways. I didn't have much to add or say other than thanks for sharing your story.

@Antimony Dot has got the fingers crossed covered so I'll cross my toes for as mild as possible covid for your partner and finding some much needed escapism for you. I normally have a list of comfort tv rattling around in my head but I seem to be drawing a blank right now. Sorry.

@Dot thanks so much for the input and suggestions. The cook ups are a massive thing. Damien has so many sensitivities to food and so many things to consider that every meal needs to be prepared. Do notice that when organised and bulk meals like your stew can be made it is a big difference. We yet again as changing the way we eat and am still exploring this so have stepped away from cooks up so can feel the pressure around this. Damien does have some additional support hours available for him so will make it one of my three things to ring and organise some support work for doing cook ups. The alarms are a good idea as well but do find that after awhile all of us at home just end up ignoring them???? Have also explored this week the need to be self-compassionate when everything accumulates and as a carer you fall off the wagon. Like the idea of three things everytime I hop up ... just need to remember that doing the washing is not one thing .... it is made up of lots of little steps. Once again thanks for you ideas. 🙂

@Vicki-Murtagh Way to go! 🤗👍

@kalimai Hear you loud and clear. It must be so completely heart breaking to be witnessing your daugther going through all of this. It is inspiring that you are reaching out and setting up your support network. Personally know it would of been so beneficial to do it earlier. Have also received support through Wellways (Carer's Gateway). They are wonderful at offering counselling and coaching and peer support as well. There are a couple of people there that I class as main supports at the moment. Oh we also ended up receiving support from Queensland Support Services ... or something like that. Ask carer's QLD they will know what this service is. This service would actually be for your daughter but you can access it as your carer. We have avaialbe 5 horus of domestic support each week. We only use two but it means that I can ask for extra hours when needed. Am about to ask for more support once a fortnight to help with the food prep due to Damien's pysphagia. What is great about having them on board is that the funding from carer's gateway can go completely into the areas that I need for my health and well-being. Am realising that as carers it is our nature to go without so we can give all that we can to our loved ones, but that burns us out. Also as mentioned by a wonderful person in this forum consider looking at a mental health care plan from you GP. What we are dealing with is beyond "normal" and it has been a godsend to have a professional there to hear my concerns and offer support. Find it wonderful that you are reaching out. The isolation is numbing and often will slip back into this, letting go of my supports so thank you for the reminder of how important this all is. Keep being amazing

@lau_ea_aus they definitely are ... this article offered a beautiful debrief topic whilst Damien and I were doing an evening shuffle around the block ... commitment to the boundaries are also important but the paradox is that flexibility is also needed ... its a juggling act

@claudia Thanks for the incredible article ... it was a wonderful reminder of the importance of the practices that make caring a gift instead of a burden. Love how Yasemin shared that our purest and deepest intention will mobilise us to rise to the occassion. So potent. Once again thanks for sharing. Enjoy this gorgeous day. Vicki

@antimony There is certainly so much grief for the life your partner would be living without his illness. (Still grieving mine.)

Reading through your post, the biggest issue seems to be how to make the most of this appointment with the new GP. It is sensible to go to the new GP with a clear list and timeline of symptoms and the way life has changed. To get a useful diagnosis, the doctor needs the whole picture.

It is your partner's journey, but you are an important part of his life and, next to him, presumably the most affected by his illness.

I think my suggestion would be that you write out that timeline and list of symptoms as you see them. Especially write out clear, concrete examples.
I would include his ambitions and abilities, and how they have been affected by his chronic fatigue.
I would include symptoms from the CFS list that are relevant, eg if he has unrefreshing sleep and post exertion malaise.

You can avoid saying chronic illness and life long disability, just document the reality that you have seen. Be clear about the 6 years and the patterns you see.

Then, respecting that it is your partner's issue, I would give the list to him and ask him to consider if he thinks it represents the reality of his health issues, if it would be a good list to take to the doctor. And I would abide by his response (I hope).

A proper diagnosis is not life crushing, but a chance to make the most of that little life, and stop it from getting any smaller. Good management might even make life quite a bit bigger again.

You will sense, reading this, if it is something that may help. Ignore otherwise!

But best wishes

@Daffy_Dave It is a wonderful website and there is still work underway to add additional recourses.
@emsarah I hope you like it.

Today we were pleased to launch a dedicated Carers page on our website, with a range of factsheets and links to tools to support carers throughout their caring journey. This work, and the recently launched extension of our Online Community Groups program which offers peer support groups for carers, is funded by the Victorian Government under their Supporting Carers Locally grant.

https://www.emerge.org.au/pages/category/carers

@msmac My son's girlfriend is just like your daughter. If you would like to chat, please feel free to get in touch.

Pleased to meet you Willowbank!

@MamaC I am the same. I am just glad we have Open Access College as an option so she is able to do school. Then what happens after that we will deal with when we come to it. Not being able to help is the most frustrating thing