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Self-Care with major Physical illnesses

AdgeSenior Contributor28 Oct 2018, 10:24 pm AEDT

Self-Care with major Physical illnesses

Hi @Former-Member This is an old post - it explains how medical neglect by Drs (doing no scans or tests) ended with me in hospital - the direct cause of my 1st emergency bowel surgery.

I have no current GP, since mine left (months ago) - will need to find one.

I have lived for several decades with serious physical illnesses (or conditions) -

Scoliosis, causing severe back pain

Sleep Apnea (diagnosed 11 years ago), causing debilitating daily fatigue - treatment & stimulant medication has moderately improved my functioning. Not to anywhere near a "normal" level, for someone without a Sleep Disorder (or a fatigue condition).

A bowel obstruction (tumor), with 3 major bowel surgeries (2 emergencies) - from which my body has never fully recovered.

My digestive system (which was disconnected for 6 months), has not worked effectively for the past 3 years - since my bowels were re-connected (stoma reversal surgery).

I also have Complex PTSD, from more than 2 decades of trauma.

Because PTSD is supposedly an "anxiety disorder" (so-called) - medical professionals have on several occasions attempted to "explain away" my physical symptoms as being "just anxiety".

This has stopped me from accessing adequate medical care, on several occasions.

The "just anxiety" was later found to be a life-threatening bowel obstruction (tumor) - which required immediate surgery. Then a 2nd emergency surgery, 3 days later (when the 1st went disastrously wrong). Then a 3rd bowel surgery, 6 months later to reverse the damage (& clean up the mess).

I now have 2 serious hernias, as a result of the bowel surgeries - wound split, extensive wide scarring, & hernias in the middle.

Have others experienced their physical illnesses (or medical emergencies) not being taken seriously - because of having a mental illness diagnosis?

How did you overcome these obstacles to receiving medical care (if you could)?

Self-care is difficult, when my food does not digest adequately - despite Probiotics & Gastrostop (when necessary).

I must run to the toilet with great urgency (Irritable Bowel Syndrome) - which is a cause of stress in itself, & makes working difficult.

Adge

405 replies

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In response to: Self-Care with major Physical illnesses

AppleblossomSenior Contributor15 Jan 2019, 12:33 pm AEDT

Re: Self-Care with major Physical illnesses

@Adge

Sounds like you are making the best of it and doing the smartest thing.

I am a bit quiet today. Was triggered yesterday. Just going slow. Good to touch base.

In response to: Re: Self-Care with major Physical illnesses

AdgeSenior Contributor15 Jan 2019, 4:00 pm AEDT

Re: Self-Care with major Physical illnesses

Hi everyone.

Hernia surgery has just been booked for 6th of March - 4 day stay in hospital.
I've just seen the surgeon today - he said the hernia surgery is urgent.

It's serious, as GP said 4 months ago - although I had no way of getting confirmation of that, until today.

I was expecting the surgeon to disagree with the GP, & minimise my situation.

Instead, he said it must be operated on, or it will only get worse.

A relief to finally have it seen to.

Adge

In response to: Re: Self-Care with major Physical illnesses

AdgeSenior Contributor21 Jan 2019, 9:27 pm AEDT

Re: Self-Care with major Physical illnesses

This decision was made with Better MH (& recovery) in mind - although physical recovery has been very difficult also, under the current circumstances.

The pros & cons of staying or resigning my job became "paralysis by analysis" - reaching no decision & mentally going around in circles (with no end).

In the end, I wrote & emailed my resignation anyway - just to break the roadblock of indecision.

There is no plan to enact, to deal with the consequences, or to "Re-frame" a positive way forward.

I very much need to work on a plan - which may include renting out a room (or 2) of my house, to gain some small income.

I had a very constructive & positive 30 minute meeting with my Team Leader (12.30-1.00pm) this afternoon - he offered to try to limit the demands for work (client) use of my private car.

Yet there was little that he could do, as the Disability & Aged care sector now demands that employees use their own car - driving potentially 20,000 Km per year, mostly unpaid.

He offered to withhold my resignation letter, if I wished to consider it further (or change my mind) - before having it submitted.

Instead, I very sadly asked him to submit it to HR.

My Team Leader agreed with me when I said that working in the "Not for Profit" sector can be Soul-Destroying - with constant changes that we cannot adapt to, with no workers knowing where they stand (or what their rights are).

It is the system, not the people that has been causing me such intolerable stress - my employer is unable to change that system (& NDIS funding system).

My only way to "opt-out", with the aim (goal) of practicing Better Self-care - was to resign (leave).

Adge

In response to: Re: Self-Care with major Physical illnesses

AdgeSenior Contributor01 Feb 2019, 8:12 pm AEDT

Re: Self-Care with major Physical illnesses

Hi everyone.

I'm uncertain & somewhat confused about any immediate goals or future plans for myself, at the moment.

That's because December's events had such a huge impact on me - that everything virtually came to a stand-still (froze).

I've had some brilliant suggestions, but rather vague - with no face to face support (or services) to enact anything.

So my immediate focus needs to be smaller - ie primarily seeking more on-going supports & therapy groups, if available.

To give myself credit, there have been some big achievements amidst the traumatic events (& coming to terms with that) -

1) I went to see a surgeon privately, & am getting my major hernia surgery 6 months to 1 year sooner (still through public system).

2) I've had some dealings with solicitors (lawyers scare me) - & have sorted out a big financial matter.

The flashbacks that I've been having (for several weeks) from December's stressful events - have eased thank goodness..

Adge

In response to: Re: Self-Care with major Physical illnesses

AdgeSenior Contributor20 Feb 2019, 9:22 pm AEDT

Re: Self-Care with major Physical illnesses

Hi everyone,

I'm going into hospital in 2 week's time - for a complicated Hernia surgery (the surgeon said).

Directly caused by the wound split (not re-stitched) & massive scar tissue - from my last (3rd) Bowel surgery, 3 & 1/2 years ago.

It's been a long wait, with a large uncomfortable tummy-bulge.

I received some surprising affirmation from my long-time interstate friend, who has been in a private MH facility for more than 15 years.

He said that he was "very glad that I was never admitted as an inpatient" to the Psychiatric ward - last December (2018), when I was sent in in an ambulance (several times). I was only in A&E for about 5 hours, each time.

My friend said that he has been admitted as an inpatient many times - he said that it "would not have been good for me".

He confirmed my assessment that I was "treated abnormally" by people in A&E - specifically because of being there (supposedly) for MH issues, instead of for a physical illness.

It was very very different from my experience of being in A&E for life-threatening bowel obstruction (tumour) & immediate surgery.

I did not expect this response (opinion) from my friend - I expected him to have wanted me to have been admitted as a psychiatric inpatient.

What he said was a breath of fresh air....

Adge

In response to: Re: Self-Care with major Physical illnesses

AdgeSenior Contributor01 Sept 2019, 2:01 pm AEST

Re: Self-Care with major Physical illnesses

Hi @Meowmy @eth

Here is my Physical illness (self-care) thread - if you're interested.

I've not yet regained my strength & energy, since my last bowel surgery (earlier this year).

Still grappling with Irritable Bowel Syndrome (daily) - caused by my bowels being disconnected (stoma & bag) for 6 months.

It's been a long recovery journey.

There have been some good exchanges of information & experiences, earlier in this thread.

Adge

In response to: Re: Self-Care with major Physical illnesses

MeowmySenior Contributor01 Sept 2019, 2:49 pm AEST

Re: Self-Care with major Physical illnesses

@Adge hey Dave, thanks for the tag. It's so hard with a chronic illness. Hope we support each other through bit by bit. Rest is so important. Hope your energy is a bit better in the afternoon. I just been lying down for a nap. I feel down and anxious lol. Not physical . Guess physical, mental illness can be similar. Hope the day turns out a bit better for us all. Take care.

In response to: Re: Self-Care with major Physical illnesses

AdgeSenior Contributor01 Sept 2019, 2:52 pm AEST

Re: Self-Care with major Physical illnesses

Hi @Meowmy I get very anxious too.

I have complex PTSD, which is supposedly an anxiety disorder.

Yes there's definitely interaction between physical & mental illnesses.

Adge

In response to: Re: Self-Care with major Physical illnesses

MeowmySenior Contributor01 Sept 2019, 3:16 pm AEST

Re: Self-Care with major Physical illnesses

@Adge Hey Adge, hope your afternoon is getting a bit better. It’s sunny here. I am having a coffee and hope to go out for a walk after. Take care.

In response to: Re: Self-Care with major Physical illnesses

ethSenior Contributor01 Sept 2019, 3:50 pm AEST

Re: Self-Care with major Physical illnesses

Sending my support as always @Adge Sorry to hear you are still debilitated from your last surgery. Have you been able to do your regular yoga like you used to?

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