Fear

That's what i was working so hard for - get everything sorted, downsize, move to the country and 'retire' from all the hassles of the world.     Be mostly off-grid, grow all our own veg, process our own water source, generate my own power - just live a very gentle life.

I don't watch the news - so little of it is relevant to me and I have no power to change the rest - so I just ignore it.

I think you've collected it all up into a perfect reflection tbh. It's all about other people which is crazy when you think about it. You've spent your life working hard to provide money for yourself and your family, but ultimately, how much of that was about your well-being? Would living in a shed on a plot of land without the riggers of career, mortgage, and pressure, be too far removed from our present reality to be a bad thing?

I'm inspired to reduce, strip back, and accept a life we should be living, that only indigenous tribes now seem to be able to sustain - and even they are disappearing fast - who don't struggle with diseases born of lifestyle, like we do.

I want us all to just stop. Covid allowed that to happen for a brief time, but already I can see society getting back to 'normal', and expecting a different outcome. It's sad. We know the answers, but can't seem to generate a capital structure to support them

When first diagnosed they tried all the 5-ASA meds and found I'm dangerously intolerant of them all - worked up to Azathioprine - which wrecked my kidneys - went on to Cyclospiorine - cranked my blood pressure to 210/160 and developed viral encephalitis and almost died.    That left me with CFS and brain damage.    My trust in them ended there so I've been looking after myself since.

Unfortunately, I've also been under enormous external stress to keep going through the whole period that I wasn't able to walk away from so I gradually disintegrated over the years.    I've burned the candle so very brightly, fighting against my apparent destiny.       During the diagnosis of my cancer it was noted that i don't have a spleen - never had one - that could explain some of my strange body chemistry.

I still have too many things to get done before I'll agree to shuffle off this rock

I don't really rationalise it because it's a chaotic system - it can't be categorised so all I can do is make good decisions and live with honour.    Be good to people and 'do the right thing' - even if it is detrimental to my well being.

Guess they can only help you if you let them. At the start of the pandemic we had a baby on the way, a mortgage to pay, and my partner got made redundant, so my body flared up hugely. The bleeding was constant. So I doubled the 5ASA meds, but it did nothing.

So I decided to take action. I stopped all meds, and started meditating, and introduced meat back into my diet. I slowly got better, and put on a stone (which I need to).

Recently the stress has been creeping back up with constant daily Dad duties without any family to support us close by, plus my manager put me on a big new project at work (which I requested not to before hand whilst having a newborn - was ignored).

Had my vaccine yesterday, so feel life is starting to move in the direction of hope a bit more. But certainly I need to slow down again. I always get sick as the demands increase. Been living and working from a bedroom for 12 months now, really bad on my head. But the light is starting to glimmer and soon I can move to an office again so today is a better day - even with a dead arm :)

I meditate twice a day, and have re-engaged with spiritual interests which bring me comfort and help me stay calm, but it's a marathon not a sprint (just wish industry would learn that).

How do you rationalise it all? I've listened to a lot of Alan Watts lectures before, his perspective on life is always a comfort you might also benefit from?

Been there - not done that - planned it many times in the early days when it was completely out of control - feeling sooooooo ill all the time while being forced to function to everyone else's' clock and just gradually spiralling down.    I've had the means for a quick solution handy - just in case.

I'm lucky - I get fed up with dealing with the standard procedures so they let me self-medicate - my flares started over a few days from nothing to major blood loss - so booking me in to see the consultant 3 weeks from next Tuesday was not a lot of use - I would have been hospitalised in a few days.     They agreed to let me just deal with it myself - as I would begin to flare, I e-mailed the emergency nurses and let them know all my critical stats and go for a blood test and start the steroid path to recovery before I hit rock bottom.     I'd get a confirmation e-mail back in a few days.      I managed for 20 years without an admission to A&E.

Unfortunately, I got so good at looking after myself, they got sloppy in their responsibilities and missed the cancer that's killing me.      I'm slightly miffed.      They've all *technically*, just about followed minimal guidelines so I can't sue them to oblivion.

In my life I've had about 8 previous near-death close-calls - it's a bit like Final Destination.

How are you managing?

That's a good point, not sure I've differentiated between them before. I've had anxiety my whole life, low level, with spikes that cause me big problems. But I'd say I see fear as being present in episodes as well. I dont mean to, but have offended people before since being a child upwards. So I've built up a fear there as I never mean to. As well as with becoming accutely ill, because of my IBD. When that's flaring up, man, I start to think about ways to stop the pain, and I've managed to keep myself away from choosing an abrupt ending so far, but the realities of chronic illness are of a downward tragectory generally so it's tough to battle back everytime it fires up

I 1 up'ed you because I have exactly the same situation. Its not just me!!!! 

I suffer from terrible anxiety all the time but very rarely have I felt fear.

Is it really fear (an unpleasant emotion caused by the threat of danger, pain, or harm) or is it more you have terrible anxiety and so worry (feel or cause to feel anxious or troubled about actual or potential problems.) about everything? 

I used to mix these two emotions up. I worry about alot of things but I am not sure if there is anything that I actually fear in the proper sense of the word as I haven't really been in many dangerous situations.

JT said:

What would a ND friendly wedding consist of I wonder?

Only having people that actually matter to you present who you want to share the experience with

It's all such a horrible thing to deal with bereavement - we had another group of deaths a few years ago - 6 dead in 3 months - the crematorium has a coffee shop - 1 more and we could have a free coffee and our own parking space 

FEAR = False Evidence Appearing Real.

I have a PhD in Grief and Bereavement.

Gran's Wake was a challenge, as I had little time to be alone. However, it went well. And I still pay respects.

Yes - if you are genetically susceptible the stress is usually the trigger - my dad dropped dead while my wife was having a difficult pregnancy, work was terrible, I was being manipulated and bullied constantly and a couple of uncles died at the same time - I became ill over the following months.     I was an undiagnosed aspie back then so I had no way to process all the stress - the body-crash was inevitable.

Thanks for the kind words, super sorry to hear you think your situation terminal. We all have a shelf life I guess so glad you sound like you've lived an interesting life and have a nice legacy surrounding you in such a difficult time. I just had a little boy so can see where my energies need to be directed now, it's all about the next generation ey.

I've managed to semi step out, I work from home 4 days a week now in web design. It's still very full on, but it's a stepping stone to more flexibility I hope.

Keep the faith, if stress caused our illness, then recuperation could be the elixir maybe? Stranger things have happened all the best

Thanks for your thoughts - the IBD will get me in the end - peritoneal cancer as a secondary from a suspected tiny bowel cancer which has spread around.    Game over.

I worked for a major company and after finishing a big technology-transfer project a few years ago I managed to grab a big redundancy payout so I was able to semi-retire.    I'm using the money to vastly extend this house ready for sale (the original plan was to coincide finishing this house and my daughter's graduation to create a new, calm, low stress life in the country.    Not going to happen now).

The time since retiring has been great - no external stress - no colitis flares - setting my own timetable, taking rest days if I needed to and being kind to my body's needs.    Shame I had my killer lurking within me.

Best wishes with your Crohn's - stress is a major factor in the disease - if you can find a way to step out of the rat race then grab it with both hands.

Oh really, and how does one 'get out'? sorry to hear about your cancer, that's ultimately what I'm most afraid of, as I know it's the likely end result of my ongoing Crohn's issues and I'm sure that's always on my mind.

Will send some positive thoughts your way when I meditate next

JT said:

Clexane gave one of the advisories as being unsuitable for UC, so you might wanna rethink/check that out.

The research was done in 2006 - unfortunately, I have to be on Clexane for the multiple pulmonary embolisms that almost killed me last year which are a secondary effect of the cancer - but it has significantly helped the UC.  

Dealing with people is a PITA - I'm lucky, I got out at 49 so I only do what I choose to.

I stopped watching the news a few years ago - and Morrissey agrees!

https://www.youtube.com/watch?v=1rmAi9XmlIo

Thanks guys. A quick Google of Clexane gave one of the advisories as being unsuitable for UC, so you might wanna rethink/check that out.

I agree with your point on weddings, and fear, and developing strategies to overcome these situations. I'm nearly 40 so I've had a lifetime of masking in different ways. Just feel like now I've been doing it for so long I feel exhausted by it all, and tend to just keep away.

I fell out with a best mate 10 yrs ago because I confided in him about being depressed and he took the Mickey out of me for doing so, so I just stopped speaking to him. But he's the only friend I stopped speaking to out of our whole group, I could never, and still can't, find the words or motivation to tell him why and what that did to me. I recently offended my manager at work through asking to switch to a different one for professional reasons (which are still valid).

These issues follow me round. But I spend all day everyday afraid. I feel constantly on edge, waiting for the next problem to pop up and shame me. When I was younger it wouldn't effect me like it does now. Too much time spent thinking I guess.

And thanks for the reassuring words on the jab, I have to stop reading the news, it's all bad and always frightens me!

Had my jab a few weeks ago. My arm ached a bit for a day or two afterwards. My biggest discomfort was having to sit under the florescent lights in post-jab room the vaccine center for 15 minutes while they made sure I didn't have an adverse reactions. I never thought to take sunglasses.

If it's any help there's an excellent page on the Crohn's and Colitis UK website on the vaccine.

https://www.crohnsandcolitis.org.uk/news/latest-coronavirus-vaccine-for-people-with-crohns-or-colitis

That whole fear of new experience is, as I understand it, a concept called the "intolerance of uncertainty", which basically means ND's are more sensitive to fears about outcomes in ambiguous or uncertain situations - and are more likely to consider a negative outcome. A lot of information about this is still flapping around in academic circles and is a relatively new area of research. Newcastle University in the North East is one of the institutions looking at this if you wanted to reach out to them (I keep meaning to, but my plate is pretty full with other things at the moment).

On the whole wedding front - out of my experience there.  Wishing you the best of luck.

E