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Re: Self-Care with major Physical illnesses

Seems to be a recuring pattern @Adge

 

Been there too many times and am not the only one.

Far too many people are down graded or not taken seriously.

Hope they get you sorted.

 

Re: Self-Care with major Physical illnesses

Thanks @eth for your suggestions.

Good to hear from you.

Thanks for your sharing, experiences & ideas @Appleblossom

Thanks @Wanderer You sound empathetic & understanding.

Sorry to hear that you've lived with much pain.

I shall have to look up your Creon suggestion.

Adge

Re: Self-Care with major Physical illnesses

hello @Adge

one thing I have is curvature of the lower spine - (scolisis) apart from other diagnosis

@Former-Member

@Owlunar

 

Re: Self-Care with major Physical illnesses

Hi @Adge, writing this after 3am, on one of my night-time awakenings. That's another of my illnesses related to my bipolar: chronic sleep disorder.

Been thinking about how to respond more helpfully to your initial questions, especially about how to access better health care.

I'd suggest that the central key to having much better care all round at this time in my life, has been finding (and sticking with) a good GP. I've been seeing mine for about ten years now. She has helped me so much, for:

  • general regular health checkups and procedures (such as B12 injections three monthly, amongst other things);
  • medical testing, of which I've had a lot over this past decade (blood tests, ultrasound, breast screening, pap smears, x-rays, etc.);
  • specialist referrals (mental and physical health, with both private practitioners and through public hospitals);
  • psychological treatment for 10 sessions a year through the 'Better Access' scheme;
  • accessing allied health practitioners (mainly for me physiotherapists) for five sessions per year (I have a lot of trouble with my legs);
  • most recently she has been amazing during the past couple of weeks when I've had a scare with my heart. 

Prior to finding her, and over my whole life before that, I never realised how extremely helpful a good GP like this would be. And so I tended to just have single sessions, or a few of them, with basically any GP I could find near me at the time (I've moved around a fair bit in my life). I understand now that this is not the best approach to things and means the GP can develop no ongoing understanding or memory of who you are, what your needs might be in the longer term, or how to help you in any way that is beyond mere basics. It's taken me a long time to find such a good GP and come to appreciate all this.

Do you relate to any of this, @Adge? Do you have a good GP who is helpful like mine?

I do have a tendency to post long raves when I start thinking about issues like this, so I'll leave this one here with just my thoughts about the central role of the GP.

Re: Self-Care with major Physical illnesses

Yes that's helpful thanks @Mazarita

I can relate.

I don't yet have a GP who I have full confidence in but I'm working on it.

Current GP is much better than previous.

Adge

Re: Self-Care with major Physical illnesses

Hello @Adge

 

So sorry that I was unable to respond to you sooner...

I already struggle with too many threads...

have tried to stretch myself out and finding that most of them move too quickly...I then have to read back over so many pages...by the time I work out what to say another couple of pages have appeared..

then it is time for me to take a break from the computer...

 

So I am making a point of responding to you now..

Yes most definitely yes....I have been down the path of being treated like a number rather than a person..

a few doctors going back over the years have been life savers...

the majority of them following the text book..

I have changed so many times through  being treated disrespectfully.

I started to ask at reception if they had anyone trained in mental health...the flat answer to that is yes they all have basic training...

I did ring up a new clinic and ask the question...It is about a 20 minute drive away...So I have that as a backup plan ...have not needed to use it..

 

Even some specialists cannot cope with too many questions...

 

It is extremely frustrating...exasperating and I believe a contributor to the cycle of the health system in this country..

The mental health system needs much improvement...

The health system contributes to overload in mental health system...

 

How hard is it to treat a human being with respect?...we all know the answer to this question..

 

Something that my sister did after being on the merrygoround of operation after operation over about a 5 year period..

her doctor printed off for her all test results...operations...current diagnoses...current medications..

she just takes that in every time she has an appointment somewhere...the doctors..specialists actually appreciate it..

 

Adge if you feel up to it ask your doctor to telephone you re the information required for the hernia repair...explain to reception that it is urgent as you have been placed further back in the queue.

 

The sad thing is that we have to become more responsible for our health...all people should whether mental health issues or not...

So it is your health...your life...they need to start listening to you...

You will get excuses...told that they are too busy...just stick to your guns..

If I have a few questions I now have learnt to book a double appointment...that helps too as takes pressure off of gps..

 

I hope that some of this is of help..

if you already know all of this...well perhaps I might have reminded you of something...

foggy heads...confusion...all go hand in hand with living with symptoms of mental health...let alone physical issues..

 

Lastly the mind and the body are one....a doctor cannot just treat the physical ailment without taking into consideration the mind struggles...

I have reminded my gp of this...after a few standoffs laugh ...he finally gets me...

persevere...

SophiaHeart

 

 

Re: Self-Care with major Physical illnesses

Thanks @Sophia1 Yes hearing your experiences is helpful.

Foggy mind & clouded thinking, yes I struggle with that daily - largely due to dissociation (a trauma symptom), & fatigue.

 

Very sadly, it shuts-down my assertiveness capabilities - which leaves me unable to ask for the support or results that I need (for health, etc).

 

I totally forgot to ask the Dr any essential questions, at my last appointment (2 days ago).

 

I'm sorry to hear that you have experienced disrespect & being treated like a number - by health professionals. So have I, on a far too frequent basis.

 

Taking medical reports into Dr's appointments sounds like a very good idea.

 

I phoned the medical centre that same day - & asked them to send my surgery reports & further information to the hospital. I told the receptionist that the hospital staff said they need more information, & that I've been put on the low-priority surgery list.

 

As to whether that makes any difference or not, I don't know. I probably do need to take it further, but I have no idea how. I may need some sort of advocate - as I don't seem able to effectively argue my own case.

 

Several people (including my yoga teacher) have said that being put "low-priority" - when it's urgent & was directly caused by my bowel surgeries, is not acceptable.

 

Yet I'm given unacceptable treatment on a regular basis (especially by health professionals) - so I've been largely conditioned to just accept that bad treatment, & to give up trying.

Adge

 

 

Re: Self-Care with major Physical illnesses

Hi @Adge, sorry you feel so despondent at the moment about your negative experiences in health care. I've had a lot of negative ones too in the past, feel very lucky I now have better care in place. When I posted about my wonderful GP, I didn't mention that it's taken years for us to get to this time of such good treatment from her. When I first went to see her, I had the same attitude I used to have to all GPs: as long as she did the basics, she would be good enough. I was in a pretty bad place when I first went to see her too, and found it hard to talk about stuff with her very much. The longer I've been with her, the better it's become, as my trust in her has grown over the years.

One thing I used to do when I was in that place where I found it hard to talk to doctors, and would forget a lot of what I wanted to say and ask, was to make some notes on what I wanted to get through before appointments. I just wrote them on a little note app on my mobile, which I'd refer to during the consultation. Helped a lot.

I also agree with @Sophia1, that asking for long consultations when I was making the appointments really helped a lot, as my GP then had time to give me better quality attention. I still do this from time to time if there are more than a few simple things to get through.

Re: Self-Care with major Physical illnesses

Hello @Adge @Mazarita

 

As @Mazarita mentioned I too take notes if I know that my mind is more confused than normal or I feel that I cannot explain myself well enough..

This is actually a measure in self-care and as I think I said before the gps do actually like it...

I have even on occasion asked them to repeat something so that I can write it down..I have had bits of paper handed to me many a time...Again I often find that they like the fact that you are listening to their advice..

I often have to remind myself that they see many people during their shifts...many people do not ask questions...do not want to know....

we are in the minority...so they are not used to someone using notes..asking questions even..

 

Just a suggestion...

@Adge ask the reception area to organise a copy of your medical history including all of your operations...dates performed...any specialists...current medications...for your own records..

You are entitled to do this...If they try to fob you off...explain that you are aware that you have a right to ask for your medical history...

 

Also if you are referred to a new specialist ask that specialist to send a report to your gp...some do not automatically do this even though they should...

It does take practice...

I have been assertive with my health for some time now...you will come across people who become defensive...that is their issue not yours..

keep on writing here if it helps..

 

This is a good idea for a thread as will help others starting on this journey...

You have voiced major concerns that many people have and believe are a part of their own mental health...their problems..their unworthiness..

 

Use this space as your voice....you are more assertive than you realise perhaps.

 

We all believe in you @Adge Heart

 

 

Re: Self-Care with major Physical illnesses

Yes taking notes of what to ask into appointments @Mazarita That's helpful.

I've been doing that for years.

Then the last few Dr's appointments I've been so tired (& overwhelmed), that I completely forgot.

So I came out without having necessary queries answered.

A Report of my medical history (from GP Reception) @Sophia1 To give to specialists, etc.

That's a very good idea.

I'm stumped at the moment.

I assume that the Dr's surgery (reception) did send my surgery report to the hospital, as I requested.

I don't know if that will make any difference - in terms of getting me a higher priority listing (instead of low priority), for hernia surgeries.

I was expecting to be able to explain the surgery botchup (which has caused my hernias) to a surgeon at an actual appointment.

Instead, I was never given that opportunity - I was put straight onto the low-priority (12-month wait) list, the hospital said.

Adge

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