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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 @Shaz51 wishing two of my favourite people kind and caring for this afternoon. Love you both. peaxxx

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

Re: Self-Care with major Physical illnesses

thank you @Former-Member , @Bunniekins , getting there very slowly my friends xoxo

Hugs @Adge , @Faith-and-Hope , @Former-Member

In response to: Self-Care with major Physical illnesses

Re: Self-Care with major Physical illnesses

Thanks @Former-Member A road trip sounds like a great idea....

Thanks @Bunniekins A motorcycle trip, with a side-car for a passenger?

Thanks @Shaz51 Infection not a good thing - plus having to wait for kidney transplant.

Hugs & kind thoughts to you....

A rough day, feeling bewildered - no idea of the way forward (what to do next).

Tomorrow will be better - I'm insisting on it...

Adge

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

Re: Self-Care with major Physical illnesses

Hope tomorrow IS better for you @Adge This storm you're in will move on. Get into the soups, get through winter, self care and spring will will bring new joys for us all. Sleep well tonight 💜💙💜💙

@

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

Re: Self-Care with major Physical illnesses

I like your picture @Former-Member And your Kind Wishes - Lovely.

I can hear again now (finally) – nurse flushed wax out of both ears.

That was such a relief.

Being deaf in one ear (then the other ear as well), was knocking my confidence down – felt like being in the Twilight Zone (weird Sci-Fi).

My Blood Pressure has finally come down – due to my Prostate medication (Dr thinks).

Prostate meds reduces blood pressure - as a positive (known) side-effect.

So I don’t need to take extra Blood Pressure medication.

I got my Referral to see Surgeon – to have internal stitches (out through skin) looked at.

I don’t know what will happen then – there is still a ban on any “elective surgery”, so they cannot operate on it.

My distress levels are very high, not coming down much yet (since past few weeks).

Having to focus on one small task at a time, one hour at a time.

Not succeeding in getting myself out anywhere (for outings or enjoyment) – so far still just the shops, 3km away.

Dissociation (daze) quite bad – that's a trauma survivor's symptom.

Grounding or any focus is not working well (or at all).

I cannot believe that almost 3 weeks has passed (already), since I lost my job (termination).

Nothing seems to have changed, yet where has the 3 weeks gone?

Practically, yes I have done (achieved) quite a list of things - yet emotionally I still feel in shock.

Cannot see past losing my job (was not supposed to happen) - to plan any next step or goal.

Adge

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

Re: Self-Care with major Physical illnesses

Morning @Adge, how's it going so far? Big relief for you to hear again - can't imagine not being – "Twilight Zone" experience indeed. Glad that BP stabilised, Mine has been high too - Need to start walking. Make the apt with Surgeon - there's probably wait list and things are settling. Some elective surgery is back on here in NSW.
Sorry you're so distressed still, I can so relate to the need to focus on one small task at a time, one hour at a time. Oh my goodness, it's so hard for you atm, you managing yourself really well though Adge, One day / hour at a time is so sensible.
Don't worry about not going out... enjoyment is overrated. I think most people relate to the shops being their only outing. I don't know how to have 'fun' by myself... you'll have to help me with that one.
Your Dissociation levels are not surprising... we learned to do this under high distress as a child, try see it as helping you... Weird none the less. When I started disassociating last year - I knew I had to get away from the stressors and left Sydney. Really hard by myself but made me feel like my mind was going... and wasn't gonna give my vindictive siblings the satisfaction. Grounding meditations might help you - there's some on Cancer Council website, and here on the forums - Mindfulness thread are some meditations. I need to do them more too (thanks for reminder).
Focus / concentration is badly affected by high stress levels... I've started crocheting again - which helps me. Something to be said for basket weaving. Nothing wrong with being a Basket Case lol.
No, seriously Adge, I see SI and Disassociation as my red flags for getting help. When do you see your psych next? Keep a journal to refer to at your next apt.
I cannot believe its 3 weeks since losing your job either Adge, feels like only one week ago. Big traumas have that affect. Its a major loss, a rejection and abandonment trigger no doubt resurfacing much from past trauma blurring present moment realities for some time. And with losses - grief has a way of freezing time for us, the world goes on and leaves us behind. Just how it is for wounded soldiers on tge battlefield. Please please just be gentle on yourself Adge, especially in your thoughts.
Try make something you can look at and say "I did that" - a model or woodwork project maybe. Or even just cooking a cake or big stew that will last you a week. Baby steps Adge. Loads of self care. Better than being in hospital, trust me on that one. Reach out though. Wish churches bought Casserole Crews back in vogue, I'd sick a team onto you lol.
But I do see that you've somehow achieved quite a list of practical things. Try not to stress about the emotional stuff (still in shock as you say). Yes, have a pleasant for next goalpost but don't push yourself too hard, take all the time you need too. Didn't know where to start a reply for your plight Adge, but I've grown to care about you, so tried and hope I've made sense / helped a little

What are you doing today? I'm naught... still in bed... but looks sunny out and dog needs a feed so betta shake a leg I guess, got so lazy these days...

Let me know how day goes.

EOR 🙏💙🌿

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

Re: Self-Care with major Physical illnesses

Hi @Former-Member I hope you are well & okay.

Thanks so much for your thoughtful response.

I rarely receive a one-line response from most people.

So wow, I shall have to read yours several times, for it to sink in...

Thanks for your bit about enjoyment being overrated - & your finding it hard to have "fun" by yourself.

My psych would like me to learn to have "fun" or enjoy myself by myself.

Very difficult, because enjoyment & fulfilment (for me) is associated with good company & conversation, with other people.

I shall try to get back to your post, to say more in reply (later).

Today I finally got the nestbox into the cage, for the 2 Peachfaces - I don't know why that seemed so hard (took several attempts).

Plus another perch, so they have somewhere else to sit.

I have 2 or 3 promising contacts on the online dating sites (finally) - so I wrote a few replies.

No meetups yet - at least I have some possibles, who might like to meet.

Some either don't reply at all (after I've paid for contact email) - or stop replying after one message.

So it's rather hit & miss....

That's all so far today, I guess it is a reasonable amount.

Typing (writing) responses does take me quite some effort.

Sometimes I have to give myself a break, & come back to it later.

Otherwise my Dyslexia kicks in, & I start mixing up the letters (words) when I am actually an excellent speller (& grammar).

Or dissociation leaves me like a zombie, staring blankly at the screen (unable to type).

Thanks EOR, I'm thinking of you.

Adge

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

Re: Self-Care with major Physical illnesses

That's ok, I relate to so much of your experiences @Adge, except dating... :face_with_rolling_eyes: not remotely interested in that... just friendship.
Today i got accepted for the unit I applied for in Qld - closer to my son in Brisbane. Have to give 3/52 notice tomorrow. Don't know where I'm gonna get energy to pack etc. Guess I'll just have to somehow... gonna be so busy next few weeks 🤪 please pray for me.

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

Re: Self-Care with major Physical illnesses

Hi @Adge @Shaz51 @Bunniekins and all... How's ya health going. Makes it hard when body pulls down the mood. I've been packing boxes so back is sore. Remember how I went for liver scan last week and decided to sit and wait to see if DR calls me back to discuss results? Well, she has and I've booked a double Friday. Could just be stones i thought, but U/S technitian said not. She spent a lot of time in the liver, like 20min, from all kinds of angles, and obviously engrossed, so much so that she didn't answer a couple of questions at all, bit hard with my back to her. She did say "when you seeing your dr next?" She spent just a small fraction of the time on the other side ( kidney & spleen) and even commented "lot less interesting on this side ok" I know they're not allowed to say so I didn't ask, but have a bad feeling given my energy levels lately. Oh well, can't live forever. Its hard not to worry...

but I am distracted by this moving house business. Had removalist come give quote this morning... probably a backload 'cause there's not much, just too heavy for me.

@Sans911, are you back yet? Missed you after your helpful posts couple weeks back, nurse and all. Hope i didnt upset you. @

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

Re: Self-Care with major Physical illnesses

hello @Former-Member

sending you understanding hugs

when I had my U/S scan done the technitian did all over checking everything

when she got to my right side she spent a loooonnng time and i thought "oh no"

I know they are not suppose to say anything

but I said " is it ok "

she said " oh I can only find one kidney ----- (Ammm I have only one kidney !!!!! ) i told her

@Adge, @Bunniekins , @Faith-and-Hope , @Former-Member

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