Moving on....

'People with stress enter a state of fear > flight or fight

When I had DVT/PE, I entered into a so called 'primative state of being- having a wider peripheral vision and production of health sustaining hormones.

My personal VTE stress experience

At the end of this post, is a draft logic map showing my personal VTE view on stress and need for group support, i would like additions or amendments.

There maybe gaps in logic flow, interpretation with semantics, and misunderstanding of language.

English is my first language, cantonese is my second. It is possible english second language users translate core stress management concepts is incorrectly.

Here goes...

It is impossible to mentally emulate fear> flight or fight.

People with DVT/PE are not not animals nor birds. I am take daily anticoagulant medication, have human mind and body.

This is my case for a dedicated support group for a person or persons with an unknown cause leading to a lifelong potentially fatal medical condition, whilst taking, DAILY MEDICATION, EXPERIENCING SIDE EFFECTS, RESPIRATION AND CIRCULATION and appearing normal to a third person.

Emotional VTE Stress cycle

VTE Stress <> medicated side effects <> stress hormones <> old clots dissolving / breaking free <> pain hormones / stress hormones <> fatigue <> mood - anxiety or depression <> sensitive mind / delicate constitution <> heart and appetite needs and wants <> percieved self > actual self <> home <> work <> social <> antisocial > lonelieness <> anxiety hormones > VTE Stress <> medication <> social & anti social drugs & anti depressants <> Dependancy <> control & Spiral up/down > conditioned and acceptance FIGHT or FLIGHT <> Social benefits and welfare state / self employment / full employment and society

Physiological reaction to VTE Stress cycle

Reaction to Unknown – alert signal explore and learn, self assessment, view of surroundings group & society, assess state of genetic maturation and ability

Curiosity – Rationalise the unknown through logic derived from learned experience - ability to bridge gap between percived self to actual self and acceptance by self, group and environment followed by environment acceptance of group an differentail groups, assessment of environment by group harmony, ability to work, happiness> work/life balance.

Mind & Body Overwhelmend -

Default to Defensive mode- Endocrine system and auto nervous system take over - hormone release accelerated biological processes –

blood circulation underprerssure

deplete energy reserves respiration underpressure & not performing

anabolic state/ catabolic state / every breath hurts / don't want to breath / don't want to move /

go back to beginning

Primative state of mind & body

Sensitive to external inputs> receptors> peripheral nervous system> instincts> mind & body chemistry altered

1. endangered state of being> Reaction, Interpretation, trauma

2. Learned instincts rationalise - go back to 1

3. Reasoning, priorites & sensibilities are formulated. Traumatic blueprints of thought scenarios and emotions logged in conciousness & sub-conciousness

4. Peripheral nervous system alerted<> Automatic Nervous System alerted<> Endocrine system alerted <>Muscular system alerted <> Skeletal system alerted <> Structural integrity>  Difficulty in finding comfort lying down, at rest, sitting up, breathing <> Instincts and learning take over <> rest with feet raise, knees bent, torso in raised position leaning to left hand side <> Continued pain breating <> Distress <> Increasesing attempts to rationalise the unknown <> more aware of environmental and internal inputs

Mind & Body

Every breath hurts, heart beating fast/slow/hard/soft/skips beat/odd patterns/ weak, fatigued, tired/ head in the clouds

Try and rationalises the unknown – belief, meaning of life, religion

1. Access life sustaining energy

2. Forage for more energy reserves, oxygen – blood – food & water

3. Regroup

4. Act on instinct-

5. go to 2, go to 6

6. Withdraw/conceal> Interpretation, traumatic?,

7. Formulation of emotional & physical triggers

8. Surrender> go to 4

10. Rationalises - learns, revert to beliefs, question meaning of life

11. Make decision

12. Defend self and heal - go to 1

13. Nurture, Sustain,

14. Voluntary, Involuntary resignation

15. Moving On!

Sorry that you too have had this horrible experience...it really is very scary isn't it?

I was diagnosed with a large saddle pulmonary embolism exactly a year ago after a couple of long haul flights.  I am now on rivaroxaban for life.  What I have learned from talking to others in a similar situation is that everyone recovers at a different rate.  I can't honestly say that I feel back to full fitness now but things have improved to what I suspect may now be the new 'norm' for me.  That includes having mild, constant chest pain, SOB, leg pain where the DVT was, dizziness (possibly from the meds), and anxiety in case it happens again.  I find trying to keep busy and active but without pushing myself too much helps a great deal.  The worst times are the middle of the night when sleeplessness hits and the worries start!

Are you happy with the medical treatment that you are getting?  I ask this because a lot of us seem to feel that we are often fobbed off with kess than adequate care.  Be prepared to push and make a nuisance of yourself if you have any worries.

This site is a wonderful source of information and support so do air any concerns or just sound off if you feel the need...there always seems to be someone around to listen.

With every good wish

Alex x

Thanks for your reply.

It's the scariest thing to ever happen to me. I've been lucky not to have been hospitalised at all in my life until now.

I am angry at the doctors for not picking up on the dvt. I could have died!! My family were very upset and are looking after me well.

I have a heart scan on 21st to check any damage and another scan on Feb 8th.

It's still all sinking in I think. I'm so tired at the moment all I want to do is sleep. I have too much time to sit and think about stuff. Trying to keep busy sitting down is hard.

I hope you get better as time goes on. Thanks for your support.

Carol x

I also had bilateral PE in September the best advice I can give is don't expect too much you will feel better eventually but not for a while. I began to feel really low and thought I would never be better. But you do I returned to work beg December just finished my phased return working four days for a bit but out the house 12 hours still get chest pains a bit of a walk and I'm shattered but the breathing has improved lots. So hang in there your not alone we support each other. You do worry about getting another but then I think we'll anything could happen to anyone and are able to push those thoughts to the back of your mind eventually. As you begin to appear ok to the outside world I think it's harder as everyone assumes that's it your ok when your drained most of the time. It's four months since mine iv read can take 1-2 years to feel yourself hope this helps I think if we know this we don't expect too much and know this is normal to feel the way we do

   I am going to echo what the others have said and reassure you that things will get better :-)

   DVTs and PEs are notoriously difficult to diagnose unless the symptoms are in your face which often they are not!

   I started this thread three months ago when I was struggling both physically and mentally. I was surrounded by people but felt so alone! I was terrified of the mortality this illness represents. Frustrated because of the restrictions my fitness imposed on my life.  Angry that this had happened to me for no reason... and for the second time! Feeling as though I wanted to shout what I'd gone though from the rooftops as I don't have a stick or a wheelchair to show to outsiders I am ill... I am walking slowly because I wouldn't be able to breathe if I sped up etc etc!!!

   Three months has now passed. I am back at work full time though am still very tired after a day at work. I still get intermittent pain but always have since my first PE... Scar damage I'm told. I am still not at my pre PE fitness level but I am a lot further on than back then! A new year has given me a more positive outlook though I am still awaiting a cardiac echo and exercise tolerance test to ensure no permanent damage has been done.

   So my basic advice is don't be too hard on yourself.... time is the great healer it promises to be... and expect good and bad days... eventually the good will outweigh the bad. 

   Most importantly... as Allexie says.... there is a nice little support network going on here which I found of great comfort as there is little in the outside world!

   Good luck :-)

(I was struggling both physically and mentally. I was surrounded by people but felt so alone! I was terrified of the mortality this illness represents. Frustrated because of the restrictions my fitness imposed on my life. Angry that this had happened to me for no reason... and for the second time! Feeling as though I wanted to shout what I'd gone though from the rooftops as I don't have a stick or a wheelchair to show to outsiders I am ill... I am walking slowly because I wouldn't be able to breathe if I sped up etc etc!!!)

This is exactly how I feel!! I have never felt so unfit in my life!! I do feel better than I did a few weeks ago but like you say going slow is best!!

I am really happy that I have found this site and can relate to how other people feel as they know what it's like.

My family are great but still they do not know how it feels to feel like this 😔

Thank you for all your replies

Carol

The physical and mental aspect of VTE's, PEs & DVTs is manageable at the expense of other things in a patients life. This condition has reduced me to breathing and not many people I have conversed with fully understand this predicament.

I belong to a group of people that have got this condition by a mutation or by an undiscovered cause. My family are a mix of agnostic, athiest and God believing people. They all have material responsibilities.

The NHS and Welfare system we live in has been failing me since I have been diagnosed with this condition, since May 2014. I will be taking this matter up with my MP Caroline Flint in due course.