Friends, Family & Carers Forum

[Faith-and-Hope]

Morning @Vanro and welcome to the forums .....

Its that crazy mix between loving someone but not loving their condition, right ?

One of mine was born with intellectual and physical disability, but the mi issues we have encountered in different family members across time have left that one in the shade ......

Anxiety, stress and situational depression seems to hit the gastep-intestinal system pretty hard.  I ended up with metabolic syndrome which I am still trying to reduce the effects of, and I also found it affected respiratory and immune systems as well.  

The thing is, the mi issues belong to all of us, whether it’s an internal or external experience of it, and there is a strong feeling of being in it together here.

I am glad you found us .... 💐💕

[Libra]

Hi @Vanro,

Welcome! I just had to write to say hi. I have found this forum  very helpful. To know that we are not the only ones having to deal with these situations. When my sons doctor told me that his condition would be something he would have to deal with for the rest of his life, my heart sank...it's so sad.

I hope you find a little peace here.

Sending hugs,

Libra.

[Grasshopper3]

@Vanro

Good morning to you and welcome! I would very much like to hear more from you.

It might help you breaking out of your coccoon, knowing you are helping me.

I am interested in how things were, for Sz patients 30/40 years ago? 

How were things for you? Did you find you got any help with caring for your MI son?By the sounds of it there was little, and even now, it seems you are suffering.

Does your 55 year old son still live with you? I can only imagine the struggles you two have been through, without real family support. 

Hope to hear more from you. Little bit at the time is good.

Best wishes,

Grasshopper3

[Grasshopper3]

@Libra
....When my sons doctor told me that his condition would be something he would have to deal with for the rest of his life, my heart sank...it's so sad.....
Yes, I went through same emotion, 'my heart sank'. It's heart wrenching to see my young boy struggle, his meds, his thoughts, no social life, family so far away. I always say we're in this together, we both suffer from his MI.
IT IS WHAT IT IS, we have to make the most of it Libra....There's life out there and we have to grab it when we can!
Best wishes,
Grasshopper3

[Sophia1]

My  goodness @Grasshopper3 

I was literally on my way over to this thread to reply to @Vanro as I wanted time to think about my response....

I too would like to let you know that you are not alone in your struggles...

you have lived with the illness and such immense love ..support for a very long time....

please write to us...with us....about whatever you like...

no judgements.....comparisons...expectations here....

compassion...empathy....warmth....yes

[Libra]

Hi @Grasshopper3,

I appreciate your comment. It is what it is and we can't change that, so we deal the best we can with it. Life throws us all kinds of s*#t. But I have had times when I have felt that my sons illness has taught me SO much about life and how to cope, and I'm so thankful for that.

It has taught me that not everyone has it all together (probably no one,lol), it has taught me to accept everyone and not to judge, as we never know what someone has been through. "Walk a mile in my shoes".

Also, the strength of love between a mother and child....

Keep writing,

How are you @Vanro? 

Cheers Libra.

[Grasshopper3]

@Libra@Sophia1@Faith-and-Hope@patientpatient

My son has just come out of hospital to have a change in meds.

He is feeling stressed about a job agency, making appointments for him to come in. It appears Centrelink has rejected 3 medical certificates in the last 3 weeks. The criteria 'permanent illness' does not exempt you from working. He needs bloodtests weekly for the next few months and his new meds seem to work well. He does sleep a lot, and his psych thinks the depot he has been having for the last 2 year can now be ceased.

Great news in that respect, we will see how he feels in the next few months. 

The only thing I can do as his carer is showing support and go with him when he has appointments. I am taking quite a bit of time of work, an hour here, two hours there, but work is sort of supportive, eventhough it effects my team and a training course I have to do. 

My own health? Just keep swimming.... I have had an appointment with a social worker via my work. I told her my story and she said I was amazing lol

She asks what she could do for me, I said work on my anxiety I guess.

She went through this meditation with me, had to close my eyes, think of a stream in the forrest, it was autumn, leaves falling in the stream. All worries floating away on the leaves, down the stream.... etc.

I said I could see a huge waterfal to the left. lol

Gotta go, late for work  :0

Grasshopper3

[Sophia1]

Hello @Grasshopper3

Thank you for the update....

Good news that son out of hospital....adjusting to being at home will take some time...also his new medication...

then coming off of the depot injection...more adjusting...

I can totally understand his feeling stressed about having an appointment with a job agency so soon....Absolutely ludicrous....

Have you gone down the path of consulting the disability advocate in your area? a possible option if your son agrees....feels comfortable with...asking them to attend job agency appointments on your behalf...less time off for you...

the meditation exercise sounds like one of mindfulness....Russell Harris wrote "The Happiness Trap"....you might be able to ask your library to get it in for you to borrow if you like the idea...

I bought the book years ago and found it very useful...then life decided to land the next test...book is tucked away in storage...with all of my other books that I must get to when able..

For me I found that the leaves started piling up even though there was rushing water....the leaves and pebbles blocked the flow of water....sometimes these exercises do well...depending on how overwhelmed we are at the time...

I think that they are very useful if we practise before our load becomes overbearing...

good luck with them..

my "family member" told dad that he had received letter...had to attend job agency...for assessment for work....dad and myself were concerned...he would not survive at all without disability pension...I was going to chase up disability advocate..then we received message back...no concern...he had contacted them ...made an appointment...went to appointment...all fine...

we both feel that was best outcome...as text message and voice contact indicate MI5...asio....government agencies are constantly stalking and threatening..knowing all of his family and close associates. he probably would have reinforced his case....as noone can get a word in...have not heard anything more about further appointments...

keep in touch

[patientpatient]

Hi @Grasshopper3, sounds like a positive result on the med change.

Re the Centrelink job agency. Centrelink should have done a JCA (job capacity assessment) or ESAT (employment services assessment) and it will specify recommended hours. You might have to remind the job agency staff to actually read the assessment and then make sure they follow it. We found they often lack real understanding of MI, they tend to make optimistic judgements based on presentation rather than reading the psych assessments and they're incentivised to meet placement targets, which is not a great combination. Study is an alternative option to work search.

I liked the calming-river meditation story, especially the waterfall. We sometimes get trapped in spinning whirpools. 

[Faith-and-Hope]

I love the sound of the meditation too @Grasshopper3 .... thanks for sharing ..... and love, love, love your sense of humour re the waterfall ....

Hugs Hon ..... hard to just keep swimming at times, but it’s what we’ve gotta do.

Lovely to hear that things are progressing incrementally, even if there is some back-and-forward in the mix.

💜