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Self-Care with major Physical illnesses

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

Re: Self-Care with major Physical illnesses

@Adge

It really has been one thing after another.

Its terrible you are charged for so many ambulance call outs and were not even treated.

How is your shoulder .... Would anti inflammatories or physical treatment help?

Its hard to put up out of towners, especially not having time to prepare and being unwell. .. and top that with history that is not worked through.

Sorry all I can do is commiserate .... and say hello/

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

Re: Self-Care with major Physical illnesses

Thanks @Appleblossom

I did get physical treatment in the end - not through any hospital visit.

I had to go back to my GP to get a Referral for an ultrasound - the hospital refused to do that scan, despite their telling me that it would show the cause of the problem.

I had the ultrasound, which showed bursitis - then I had a cortisone injection in the shoulder (bursa).

Then I had about 5 physio treatments (5 appointments) to help to refuce the pain, & to improve my movement

Adge

In response to: Self-Care with major Physical illnesses

Re: Self-Care with major Physical illnesses

Hi again @Adge (and a smile for @Appleblossom)

I had a stint in a psych ward a couple of years back because my brain just decided things were too much to cope with and stopped all emotion; it was the weirdest feeling as I'm mostly over-sensitive at the best of times.

We only have a finite amount of staying power Adge. What you're dealing with is overwhelming; that's the term I used a lot on the ward.

I asked you earlier what issue tonight was most affecting you because separating each worry or task is better than trying to cope with it all at once. Home-Care can do shopping, cleaning, lawns and help with personal hygiene if necessary to focus on other things. There's funding out there if you hunt around.

Your sleep is paramount; I use prn anti anxiety med's to help get 'quality' sleep now and then if I get a bit confused or shaky. This tops up energy to keep going.

Sometimes it's the simple things that work. I pushed my bed against the wall and slept without med's for the first time in 20 years. (lots of rape scenario's) I felt safer and more in control than ever facing my door with no way of getting at me from behind.

I know this has been a long rant. I tend to focus on practical support instead of emotional as it's not my forte

.

I can't imagine what you're going through, and it's probably unfair to expect similar outcomes from you. One step at a time is the only way to do it. One tiny peaceful moment leads to another; tomorrow's another day.

I really do wish you well on your journey Adge. Here for you...

Hope xo

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

Re: Self-Care with major Physical illnesses

Thanks @Hope4me

Your response was very caring - I really appreciate it.

I shall have to read what you wrote again later, as I'm too tired for it to sink in right now.

Unfortunately my SA stuff has been coming up bog time, in the middle of all of this - that's because I've been very stressed, & hsve been in a repeatedly triggered state.

Adge

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

Re: Self-Care with major Physical illnesses

@Hope4me 's post was great.

I am not good at "care".

I had a hell of a time getting "treatment" for my neck. There are a million and one things that I just do not know about. I have learned a lot from casual reading on this site and learning to apply things to my family or to my self.

@Adge At least you eventually you got treatment. That is some thing. Phew! It should not have been the way it happened. Didn't your GP tell you the right protocol at first?? Why did the ambos keep coming out, when they were not going to treat you. Maybe now is not the time to answer ... Maybe it is still cottonwool time ... I mean treating yourself very gently only doing whatever movement that will help your shoulder recover.

Maybe put off the whole ambulance thing til you have energy to face it, but surely they should be checking up the correctness of calls before sending them out, especially in the country ... its crazy.

Dont mean to set you off with frustration of it all.

Back to my Gently Bently line

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

Re: Self-Care with major Physical illnesses

Thanks @Appleblossom

That's fine, you're not setting me off at all.

My frustration levels have been very high recently.

Very hard to ease (reduce) my frustration - because it's so often triggered by physical pain, & many external events (recently) that were beyond my control.

That so-called Radical Acceptance (DBT) would have been most useful, over the past month (or so)

- although I never managed to understand how to apply (do) that.

Psychologist said it's got something to do with "Letting Go", & not constantly trying to change things (eg pain) that I find intolerable, or that I don't like.

Adge

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

Re: Self-Care with major Physical illnesses

I first heard about "embracing" one's pain in a personal development workshop when I was quite young. At that time I had not experienced much pain.

A similar way of looking at it..... maybe

It seems mad to embrace pain, but I think it is do with muscle tensing or compensating .... If we get het up ... mentally reject our experience ... we are also rejecting our own selves or bodies ... because that is where the problem is located ...

or something like that ...

I had a lot of intense pain at one time ... now I have chronic mild ... which is easily set off into the other ... which I try and avoid at all costs ...

I have found looking at art and pictures helpful ways to manage pain ... as it "transports" and gives moments when our being is not screaming out ...

Hope things turn around soon, but it seems it will be slow ... like turning the Queen Mary ...???

Take Care @Adge

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

Re: Self-Care with major Physical illnesses

Thanks @Appleblossom Yes it's a very heavy, slow boat to turn around.

Trust me, it's turning....

I turned away from the constantly closed doors - lengthy referral processes, or refusals to provide me with treatments.

Instead, I've been looking for other options (& motivation) - I'm starting to see some new opportunities (new possibilities) instead.

That in itself is helping to reduce my distress - rather than focusing on what I cannot have (or what is unavailable).

Adge

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

Re: Self-Care with major Physical illnesses

@Adge

Sigh about the obstacles.

Glad about the opportunities.

Finding what works does give a sense of optimisim, even when struggling.

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

Re: Self-Care with major Physical illnesses

Thanks @Appleblossom

I'm listening to my self-hypnosis CD's for relaxation, & to help me to sleep.

I've booked an appointment with the hypnotherapist, who I haven't seen in 3 & 1/2 years.

He remembered me well, & was glad to accomodate me.

Adge

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