Are you uncomfortable to leave home? (possible xmrv symptom)

[ukxmrv]

I'm still fine to leave my home and usually only frustrated that I cannot do more of it. Get the information overload but must be one of the lucky ones here as it isn't bad enough all the time to stop me.

I find the obstacles once I am out of my home very bad. I was nearly hit by a car on a proper crossing (with lights and everything) whilst in my wheelchair a couple of months ago.

Sometimes even in a wheelchair I am too physically weak even to be pushed around my local park. I'm desperate to get outside but I know that even the park is too much stimulation. Also the thought of having to make conversation with the "pusher" will be too much for my mind and body.

At other times when I am stronger and am taken out in the car, I want to wind down the window, feel the air and have a good bark!

XMRV+

 

[willow]

Hmmm... not quite sure if this fits what's being asked for but I have the same sort of contradictions a few expressed. Emotionally and logically I think love to be out in the world, but the sick part of me usually finds it very difficult and is apprenhensive. Problems are disorienation and confusion caused by disorted sensory and cognitve processing, e.g. sometimes the ground doesn't feel solid, to my visual processing buildings that aren't in straight lines are falling in over me, I hear sound but commonly don't know fully what it means or which direction it comes from, I don't understand speed or distance, I can have attacks triggered by chemicals that leave me immovable or tearful etc etc... Apprenhension seems a normal and healthy response.

... But symptoms are reduced to what they were. 18 months ago i was pretty much unable to go anywhere unaccompanied because these sorts of symtpoms were so severe.

 

[VillageLife]

I just can't cope going out alone, infact I havent since I was 17....so 8 years! (Had CFS 11 years)
Physically its to hard, the stimulation, noises, brightness, the rushing about. Also the fear of having a bad turn while out, If your as weak as this, its one huge struggle being outside alone.

I do manage going out accompanied by family/partner but certainly not alone its way to draining & harsh.

BUT I miss going out alone soooooo much, the freedom!!
I swear if xmrv is it and we get some medication/ drugs and get a lot better, i'm going out all day everyday and im only coming home to sleep!

I'm going out to PARTY!! everyday forever!:Retro smile:

 

[Dreambirdie]

I have MCS in addition to CFS, which makes being "comfortable" out in the world of modern humans nearly impossible. Most people are drenched in chemically laced body products, laundry soaps, cosmetics and perfumes, all of which makes me INSTANTLY ILL to be around. It's at least as bad as second hand smoke. :Retro tongue::Retro tongue::Retro tongue: I long for the day when it is all banned from use.

Fragrances are especially toxic. Here's an article about that.
http://articles.mercola.com/sites/a...s-selfinterest-of-the-fragrance-industry.aspx

This week Amy Goodman did a segment on the toxins in cosmetics, which I was glad to see. Here's a link to that, in case anyone's interested.

http://www.democracynow.org/2010/7/21/lead_in_lipstick_coal_tar_in

 

[serenity]

i understand how you feel Villiage - if they ever find something that makes me feel better, you may never get me to stay in the house! haha
actually, i've learned how rewarding it can be to be home. so, i hope i would be able to sit still. but i'd sure be happy to get out more often. hopefully i'd learn some balance. but yeh at first, boy, i doubt anyone could hold me down!

 

[redo]

Uplifting comment villagelife. I am much in the same boat as you.

 

[VillageLife]

i doubt anyone could hold me down!

Dreams come true!

 

[Daffodil]

for me, it is sensory overload i think. i never want to go out. i dont even like opening my curtains. definitely blame it on brain inflammation for me.

i am very very slowly improving on the antiretrovirals, though.

sue
xoxo

 

[anciendaze]

There seems to be a continuing misunderstanding of my position w.r.t. psychology. Calling something psychological tells you nothing about etiology. If anyone can explain the origin of "purely psychological illness" I'm ready to listen. This is a symptom, not a cause. (I'm also waiting for psychiatrists to demonstrate substantive success in treating conditions well within their sphere. You don't find all that many former schizophrenics or manic-depressives.)

My mention of agoraphobia used a word that was around long before there even was a scientific subject called psychology, let alone a subfield concerning phobias. It is not typically found in isolation, like a fear of spiders. It is a medical label, like the term photophobia, for avoiding bright light. It is usually caused by an awareness of impaired cognitive or emotional functioning, which is very rational in the current context. (For that matter, the common fear of heights, is rational in the sense that falls from heights can injure or kill.)

There's another aspect of the whole mess with phobias relevant to CFS/ME. Isolated phobias are so common in the general population they are not normally taken as signs of mental illness requiring treatment. When one notorious study found evidence of pre-existing mental illness in CFS patients, prior to onset, most of the problems listed were nothing but phobias. This is twisting criteria to validate an opinion.

For those of you who are certain you have no psychological problems, come back and talk to me after a decade or two with this illness.

 

[judderwocky]

lol... i never leave the house. well. once a week. maybe less.

 

[serenity]

me too Judder, once maybe twice a week on a good week. i'm dyin to get out lately, i feel so isolated. i was very popular before i got sick, & it's been very hard goin from "it" girl in town to being home alone all the time.

 

[Eric Johnson from I&I]

Ancien,
I believe that a physiogenesis of long-term chronic anxiety, depression, OCD - in systemic disease and maybe even in at least some otherwise-healthy people - is more than tenable (though not really well-proven). A psychogenesis for any of these is far from proven.

Psychological disease, mental illness, mental symptom - all are fine phenomenal descriptions. Unfortunately they will always work against us, they will always imply mental etiology. Maybe this entire subject always works against us, I am conflicted about whether it is ever a good idea to bring it up...

Granted though that it has come up in some situation or other, I think it is good to point to the elevated rates of depression in MS and systemic lupus... the far-elevated (10-15x) prevalence of OCD in lupus (paper by Susan Swedo). Psychosis, even, is not rare in lupus. I guess many people believe that these symptoms (other than the psychosis) proceed psychogenically from an emotional reaction to the underlying CNS or systemic physical illness... whatever, color me skeptical..... maybe that can happen sometimes, but I steeply doubt that it explains the entire phenomenon.

At any rate, one need not even raise that question at all (and by raising it, sort of challenge more or less the entire psychiatric profession). One can forget about all that, perhaps, and simply point out to people that these 'mental' symptoms are typical of MS and lupus, a perfect analogy to the presence of the same symptoms in ME. Stick to the pure phenomenon, and let people just cruise right on down the causal avenue of their sweet preference. ("The machine is complete only when there is nothing left to take away.")

 

[Eric Johnson from I&I]

By the way Ancien I'm agreeing with you and elaborating my view, of course, not disagreeing or drawing a contrast. In case that was unclear to you or to anyone.

 

[Victoria]

When I was working & in constant pain & exhausted all the time, I hated going out.

Purely & simply because it was too much effort & I knew I would suffer the next day. I couldn't stand the smells, noise, bright lights, difficulty hearing & keeping up a conversation socially. There's also Aspergers in our family.

It was all too much effort.

NOW, everything is different. I'm not exhausted like when I was working full time.

I stay in bed until I've had enough restful sleep. I get up whenever I like. I go out when & where I want. I go out walking to relatively close by destinations where I know I can get home quickly if I tire. But I don't seem to tire, really. It's usually sore feet or lumbar back pain that brings me home again. I choose to go to places that are uplifting, quiet, full of fresh air (eg gardens & more recently take a bus to the beach & walk along the flat path next to the sand).

I always have enough money on me in a spare compartment of my purse to call a taxi on my mobile phone & get a taxi home (if necessary). This may seem obvious to some members. But not having enough money to call a taxi (if fatigued or exhausted) is stressful. Worrying about the after effects of going out is stressful.

It's very much a mental reassurance on my part. I tell myself, I'll go for a walk for however long I feel like. I tell myself that the emergency money in my purse is always there.

This freedom of thought, allows me to have freedom in going out (or staying home).

Hard to explain. It's just about freedom. I make no commitments or challenges. I completely empty my mind of everything that causes me stress or distress.

Not being forced to do anything, enables me to do something.

But for me, it's important to leave home (nearly every day now) with that freedom thought firmly planted in my mind.

Staying home (in the past) was about not being able to cope. Scared of getting tired (& thereby scared of being too tired to go to work the next day/week & earning a living).

All the time (in the past), I was scared of doing anything, because I knew that it always brought negative repercussions - more pain, more exhaustion, fear of not being able to get home, fear of fear itself.

Once you get rid of Fear, then, you can work out whether you really can do a wee bit more than you did yesterday.

I'm not talking about someone who is bed bound & unable to get up. I know that there are many who are in this very difficult situation. I'm talking about those of us who are physically well enough to leave home for short periods of time.

 

[serenity]

hi Victoria, thanks - but for many of us leaving the house every day is pretty impossible. it takes me until the time my husband is getting home from work just to do the daily chores, my work out (which i must do for pain control) & shower.
going out more than once a week would mean my home falling into chaos, as i only have enough energy to take care of as much as i take care of now. i do wish i could go out more but that is the way it is.
i do understand your statements about having more freedom now that i dont have to work.

 

[taniaaust1]

It could be described as a "autism like" symptom (without implying that all with ASD have it). I suspect (and hope) that it comes from xmrv involvement.

sorry.. i took it wrong cause of the Asperger's and my black and white thinking due to it. I thought people were trying to imply it was something all those with Autism have. Those with Autism are just as different as those with CFS.
......................

I do guess there is similarities.. those with Autism often dont go out much due to they dont want to associate with other people and many get brain "overload" .. like CFS.

I myself just accept I cant go out if its going to make the CFS worst.. so I only go out when I know the CFS is good (of cause due to CFS being not entirely predictable.. I still get caught out at times).

I think the Asperger's makes me at times care less about what others think.. hence i can nowdays easily just sit down in the middle of a supermarket floor if i need to do so (i guess thou having to do that would make a lot here feel uncomfortable about going out if that happened to them, I just see it nowdays as life.. you do whatever you need to do). Sometimes I will go out for a walk and find myself caught out with the CFS. In that case I just ring a taxi to get me and take me home (sees a bit silly at times when one is only 10-15 mins up the road but once again.. i just do whatever I need to do).

I find via being prepared to just go with the flow of situations and do whatever is necessarily to look after myself... (if that is to just cancel something and stay home I'll do that.. I had to cancel 3 medical appointments in past two weeks)... i can go out when im able to go out, without fear and discomfort

If one was forced to go out when they were too unwell to be doing so.. that's another story.. yeah anyone would feel uncomfortable then. That would be the same as someone with like something like the flu.. being made to go out rather than stay home in bed.

...............

Victoria.. i liked your post. You explained it well.. that's how I find it

 

[Sean]

anciedaze.

While agoraphobia may well be an etiologically neutral term*, it nonetheless is a label used to describe psycho-pathology. Being concerned and worried about something that is a real threat and problem may well be a psychological phenomena, but is is not a psycho-pathological one. It only becomes one when the social threat or problem is not real, or is persistently exaggerated or misinterpreted.

I certainly get anxious about some aspects of social interaction, but with very good reason. I do not see how this can be classed as a psycho-pathology.

*Strictly speaking, virtually all psych diagnoses are supposed to be etiologically neutral, except for PTSD I think. But they are still psycho-pathologies.

For those of you who are certain you have no psychological problems, come back and talk to me after a decade or two with this illness.

Certainly no argument there. It would be amazing if patients did not show signs of secondary psycho-pathology after decades of serious physical sickness, poverty, social isolation, missed major life opportunities, and often various forms of neglect and abuse from authorities and the broader society, etc. At the very least you would expect various expressions of depression, anxiety, and PTSD to be common issues. After more than a quarter century of such stuff I certainly have my fair share, and they are unlikely to go away anytime soon, even if the physical side was completely cured tomorrow.

 

[alex3619]

operant conditioning

Hi

I have not read this entire thread carefully, so I apologise if I am restating something already sent. There is an elephant in the room and it is getting nervous. Something very simple explains nearly all of what is being discussed.

Imagine you were perfectly healthy and every time you went out someone beat you with a big stick several times an hour. You ignore it at first because, if you are like me, you are stubborn, and everyone you meet is telling you to ignore it, things will be OK. This goes on for months, years, decades. At some point (it took me a very long time, I'm very stubborn) you get it. Going out equals pain. Behavioral conditioning. Now you unconsciously link going out with pain. This is normal healthy human behaviour to abnormal circumstances, and has nothing to do with abnormal behaviour or psychiatric conditions. Its pure operant conditioning. Only in this case the big stick is fatigue, muscle pain, confusion, vertigo, brain fog, sensory overload, hostile people etc. etc. And we aren't perfectly healthy, its just that everyone tells us we don't look sick.

Kick a person when they are getting up off the ground often enough and after some time they decide they don't like the idea of getting up. Wasn't it Albert Einstein who said that the definition of insanity is to repeatedly do something that doesn't work? That would make it insane for someone with CFS to continually subject themselves to torment and torture just to meet the perceived needs of other people, or even their own. Eventually we get it and limit our risk - that is normal sane behaviour.

Bye
Alex

 

[RustyJ]

I believe stress is a major factor in whether or not I venture out. I try to avoid stress as much as possible. It is the major factor is my illness, so much so that I instinctively avoid situations or activities that will stress me out. This is not agoraphobia. I do not fear open spaces. I also think that many of the factors mentioned in this thread are part of the stress thing or are caused by the stress thing, eg anxiety, cognitive dysfunction, energy depletion.

If I am stressed my cognitive functions start to close down. For example if I am trying to concentrate on driving, I cannot navigate. My memory short circuits and I have stop at every street corner to reconsult my street directory. If I get lost, I panic. This short circuits more of my brain function. Energy is being chewed up at a greater rate. Brain fog increases (less energy to drive blood into the brain). It becomes a vicious circle.

With CFS it is a continual battle against stress. A simple analogy: If you drive 50 kilometres a day, then drop to 40 kms a day, you are unable then to tolerate the 50 Km trip. If you drop to 30 km, you will find you are unable to tolerate the 40 km trip. I guess that was what PACE was all about - trying to teach the body to tolerate more stress. To extend the limits. It can be done, but ultimately this takes a toll on the body and cannot be sustained. In general CFS sufferers will find themselves in an ever downward spiral.

Some CFSers may find my experience with work will help. I manage to work part time domestic cleaning, at a great toll on my health. The alternative is to sit at home in misery completely closed off from any human contact. I found that I could only work when I had adrenaline urging me on. As soon as the adrenaline goes I fall into a heap. In fact I am able to boost adrenaline during work by deliberately creating stress and anxiety eg creating absurd deadlines, working at a frenetic pace, to a high standard by being overly fastidious. All my clients say I am the best cleaner they have every had. They don't believe I have ME. But by the end of a session, I can barely talk, cannot maintain eye contact, my eyes close up, and I ache all over. It feels like I am killing myself the entire time. Every minute is like torture. When I come home from work I go to bed and stay there till I next have to go to work. But I don't see that I have a choice. Bizarre isn't it.

 

[anciendaze]

I'm glad to see at least some people caught my distinction about psychological symptoms versus psychogenic illness.

I want to avoid another possible misunderstanding: I am not saying there are no people with psychiatric illnesses. I've had contact with some very ill people in the anti-psychiatry movement. The problem there is behavior. If you are unable or unwilling to control it, in situations where it impacts the health and safety of others, it is no longer your private concern -- someone else will intervene.

This is not a feature of CFS/ME, where patients are more likely to expire quietly at home from inanition than harm others. The topic of this poll suggests as much.

Psychiatry does enter the discussion because of the double-bind of placing patients in a position of denying real psychological symptoms in order to escape treatment which is either an ineffective use of their especially limited resources or positively harmful. When you are dealing with subjective matters, the patient is the only source of important data. (This is particularly true if you refuse to do sophisticated tests for physiological/neurological anomalies.) Creating such a double-bind constitutes malpractice. You don't even argue with a schizophrenic about whether or not he/she is hearing voices, only about the significance.

Anyone out there willing to tell me psychiatrists will not argue about perception of fatigue?