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A long rave

A long rave

Edit Feb 2018: This thread has evolved into a chat thread, which is fine by me. In addition, I encourage other members to feel free to post their own 'long raves' in here too if wished. I will continue to post my own longer raves from time to time, as well as chat with friends along the way.

Original post from May 2016:

First of all, a (very) long post alert. Please don't feel obliged to read or respond. Mainly I am writing today to clear my own head of some things. So, here goes...

Last week, I managed to get to all planned appointments and activities every day of the week except Sunday. That only amounts to one, maximum two, per day, but was an improvement on previous weeks and months. I've made all planned appointments in a week before, but there have not been so many appointments in so many days consecutively. Many of you will know that, prior to about mid last year, I spent years very rarely leaving the flat. This was since the last of my breakdowns from paid employment in 2008 (one of so many similar breakdowns from paid working, though none as devastating in consequence as this last one). With each of these breakdowns, the recovery time got longer and longer. It's taken eight years to recover much at all this time around.

This week, so far, I've made none of my appointments or activities. In fact, I've not showered for days. Embarrassing to admit but maybe helpful to own up to it. As I write I'm still in what I wore to bed, as I was all day yesterday and the day before. The weird thing is that I don't feel that bad in my emotions, just crashed out physically and lacking almost all motivation except to use the computer. In other words, my mind and fingertips are alert and active, in fact nervy and overactive as usual, but the rest of me is crashed out. Perhaps I have entered what some people call a bipolar 'mixed state'. Whatever the terminology, this is where I am and I've been here so many times before.

The way I see it, there are a number of possible reasons for the way I am after last week:

  • inner conflict about how helpful my psychologist treatment is for me (saw her on Friday);
  • trying to further reduce my tobacco intake (the struggle seems disproportionately huge and exhausting);
  • needing recovery time from a big week (by my standards);
  • simply another manifestation of bipolar disorder in me.

Regarding the psychologist. She is young compared to me and I have the feeling that she may not grasp the full extent of my situation, partly through lack of life experience. Perhaps she may particularly lack an understanding of the various physical ailments that complicate things with me, some age-related (menopause, musculo-skeletal problems), one of them a chronic illness (crohns disease). She is treating me with some techniques from Dialectical Behavioural Therapy, something I honestly have never liked the sound of when I've read about it. The main 'homework' I have for this four week period is a sheet I am meant to fill out every night covering various things including tobacco use, coffee intake, isolating, unbalance eating, sleep patterns, lack of exercise. The sheet also includes sections monitoring mood every day. The problem I find is that monitoring and (by implication) tackling all these things at once is just overwhelming. I am significantly depressed after filling out the form because it seems to highlight all the ways I am failing rather than the ways I am succeeding. The psychologist has given me this sheet as homework once before and it had the same effect on me then. A full month long slump into depression is what followed. This sheet makes me feel very pressured to recover quickly from all of these things at once, a message that contradicts the advice of my psychiatrist (who I trust much more). His advice is to take it slowly and steadily and not feel rushed. As of yesterday, I stopped using the DBT form altogether. I am even considering giving up on the therapy with this psychologist after my next (sixth) session instead of seeing it through to the ten sessions my GP is willing to refer me for.

With the difficulty of further tobacco reduction, I am succeeding in reducing this a little more but the effort is gargantuan and seems to be sapping all the strength I have for making it out the door to my activities and appointments (or even to get dressed and showered). Writing here is just about the only thing that is distracting me from smoking again or thinking about it obsessively.

I've run out of steam on writing about it all now (a huge sigh of relief from any readers at this point).

I wonder if anyone else can make any sense of this.

27230 replies

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In response to: A long rave

Re: A long rave

hello @Mazarita

this iPad does my head in sometimes..

some of my posts that I write in bed have letters missing off words..words missing..people might think that I ha been hitting the bottle..

yes nice to be back..I ended up all over the place.?some people misunderstood my intentions...today I have messed up as well..

used to go back to my circle of trust post and write to myself sometimes..

forgot about this thread altogether ..

then I saw your name in a couple of posts and likes..

reminded me how easy you are to be with on this forum..your calming presence..

I spoke to Eth a couple of times..she was leading a very interesting life which I admired.

so a special thank you for your kind acknowledgement..

I am a tad sensitive at the moment..

well...you need to do just that..rant away when you are ready..

will get back to you..

In response to: Re: A long rave

Re: A long rave

@Former-Member, virtual hugs on offer if you like them.

You are always welcome to chat with me, and thank you for your lovely words.

Since you are extra sensitive today, I might suggest that you don't read my long rant, which I will post after this. It is not a calm post and I really don't mind if no-one reads it. I just need to get it out of my system.

Will chat more and in a better mood after I've posted my rant.

In response to: Re: A long rave

Re: A long rave

A EXTREMELY LONG RANT

Warning: don't read this if you can't handle stuff to do with the gut and its workings, or traumas related to medicine and surgery.

Here at home three hours after my gastroenterologist appointment finished (all five minutes of it, as usual). Still stewing.

First of all, my history with gastroenterology. I've been seeing gastro doctors since I was 18. I'm now 55 and have lots of (sometimes traumatising) experience with medicine and surgery for an inflammatory disease of the gut. At 18 I was diagnosed with Crohns Disease. My mother has also had Crohns since she was in her 20s, as does my auntie, her sister. It's a nasty condition that can go in and out of (so called) remission but for which there is no cure.

In 1985 I had surgery on my gut for this disease, during which 70 cm of small intestine was removed. Prior to that I had five hellish years of very bad daily pain and other medical complications (anemia, blood in the toilet, etc. etc). This was sometimes relieved by the medications I was prescribed (heavy duty prednisolone that sent my mental illness into tailspins for all that time), but mostly I lived with bad daily pain even on the medication. It was a relief to finally have the surgery five years into this, though the actual process of it and the six weeks I spent in hospital was traumatising. But after that I had some years of relative remission.

Until 1992. Another year of terrible daily pain. Another surgery at the start of '93, this time to remove an additional 10cm of small intestine. An easier surgery that time (if any surgery on the gut can be considered easy). Again, after that, relative remission again.

I say 'relative remission' because, although the pain in the gut eased in a major way, I was left with fallout from the surgery: constant diarrhea, which needed to be controlled through the use of another medication to be taken daily for the rest of my life. A medication I still take to this day, which has the consistency of Clag (craft glue for those who don't remember the brand name). Even taking this medication, I still have many toilet visits per day, almost always with the consistency of water (see warning in bold above if you are grossed out at this point). Also, the rear passage down there is very tight and narrow and whenever I've gone to the loo over the past 35 years, there has been pain and a lot of stinging. I also get woken in the night and sometimes spend 30 minutes or more on the toilet, in pain.

I've come to accept and live with this (what else could I do?) over these past decades. I went through periods of time where I explored many different alternative therapies and strict diets, some of them seemed to actually aggravate the condition so that I ended up in hospital again. None of them helped except osteopathy, which helped me endure pain. It's natural for many people to think that alternative therapies and vegetarian, fibrous diets might cure or significantly improve a condition like this. But Crohns disease is not fixed this way. It is an auto-immune disease where the body attacks itself, like rheumatoid arthritis. Diet has little bearing on it. Except when inflammation in the intestine is very active, when a low fibre diet is necessary so as not to inflame the gut further.

Fast forward to now. Over the past nine months, my rear end has got worse. There is blood every time I go to the toilet now. The already tight and narrow space in there has become even tighter and narrower, so that sometimes I have no alternative than to strain. It hurts a lot, so that I am regularly semi-doubled-over and can't walk straight for a while after I go to the loo.

During the past nine months, my GP has referred me for two colonoscopies with the gastroenterologist, and to a surgeon for possible options there. The surgeons I've seen over all this time have been okay, but this latest one referred me back to the gastroenterologist as she felt my current problems must be related to a flare up of active inflammation in my intestine further up, which is usually first of all medically treated before the last resort, surgery.

The gastroenterologist I have been seeing over this past year or so is also director of a regional public hospital here. That's where the tests have been done. He has found nothing wrong with my gut in these colonoscopies and now claims that I don't have Crohns Disease, but Irritable Bowel Syndrome. This is ridiculous. They are two separate and very different conditions. It's like this gastroenterologist just doesn't believe that I've had this long history with Crohns disease, despite me filling him in on all the details (very quickly because he only lets me stay in the room with him for five minutes at a time). I could really only know all the things I have been describing to him if I had Crohns Disease, which as I said before, has no cure.

I didn't mention earlier that the surgeon after my second surgery in 1993 told me I still had Crohns active in my rear end. Again about 10 years later, a colonoscopy resulted in the gastro saying the same thing. Now this new doctor I've had for this past year or so claims I don't have it at all.

Now I wonder whether I can even trust this particular doctor's colonoscopy skills at all. If his skills are sound, it's great news that he detected no Crohns in my intestine. But what then accounts for the awful pain and narrowing I have had over the past nine months? What of my 35 year history with this disease? None of it makes any sense, and he was all ready to just let me walk out the door without any idea of how to treat my problem. Even after nine months of being given the run around between doctors and colonoscopies, and nothing to relieve the pain or symptoms. Since I pressed him, he ended telling me to go to the chemist and get some haemarrhoid suppositories. I will do what he suggests, but I feel his whole approach to me has been arrogant and dismissive, and he is now telling me that what I know to be true (I have Crohns), isn't the case (despite many more gastro doctors and surgeons in the past confirming it over and over again). Aaaargghhh!!!!!!!!!!!!!!!!

I'm going to make a long appointment with my GP next week and dump all this back in her lap.

What is all this doing on a mental health forum, you may wonder. Well, this disease has also played havoc with my mental illness over all this time. Aside from having bipolar, and aside from medications that send that flying, it is just profoundly depressing and anxiety producing to be as sick as I have been. The gastroenterologists I have seen have mostly been a very tough lot of doctors, with little compassion from my experience. At the least, they seem to have terrible bedside manners.

I amused myself earlier by thinking: 'they specialise in a*holes, and they are a*holes'.

I could rant much longer about this. About the gastro who, when I broke down into tears in their office at 18 (mental and physical pain at a peak), angrily responded, 'What are you crying for?' About the gastro who, when I told her I was very depressed, said, 'if you had a child you wouldn't have time to be depressed'. About the medication mistake during my six weeks in hospital that had me wanting to throw myself out the window. About the x-ray technician who, when I was crying and distressed as he was feeding a tube up my nose and down into my stomach, yelled at me too. About another time being held down by nurses while they fed the same kind of tube into my nose into my stomach, while I kicked and screamed. The list goes on. But I'll end it here.

I really needed to get that out of my system! Thank you if you made it all the way through. You deserve a medal.

In response to: Re: A long rave

Re: A long rave

sending you hundreds of hugs my sister @Mazarita

Holding you nice and tight

In response to: Re: A long rave

Re: A long rave

Thank you my scotrish sister, @Shaz51. Hugging you tight right back.

In response to: Re: A long rave

Re: A long rave

my scotrish sister , ohh I forgot @Mazarita

my mum has problems continueing after having 15 inches of bowel removed last year , she talks to me how she is sooo over it too

In response to: Re: A long rave

Re: A long rave

When told not to because of my own sensitivity...I have to then go ahead..

oh sensitivity has been around for many years and does not want to move on..

my quick response...what you have had to endure for the majority of your life..with symptoms of mental illness leaves me go smacked..

as for treatment from medical world ?I will refrain from responding..Just letting you know at this time that I genuinely feel for you..

reaching out to give you a hug where I hold you until you are ready to be released?.

I hope that you can do something soothing for yourself without using much energy..

take care

will talk again xxx

In response to: Re: A long rave

Re: A long rave

Thank you so much, @Former-Member.

In response to: Re: A long rave

Re: A long rave

@Shaz51, send my deep compassion to your mum. It is a hard road to have to travel, as is your road, Shaz. I marvel at your resilience too, my dear scotrish sister.

In response to: Re: A long rave

Re: A long rave

Oh good grief have to correct again ...bl...y iPad!

Go smacked meant to read gobsmacked

no question mark after released

and what is with the italics

at the very least I hope this makes you smile...

even a teensy weensy bit. Xx

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