Do you fear agoraphobia?

[blazes]

As we all know, we spend a lot of time in our houses feeling bad. The times that we do go out some of us suffer from (now I'm not going to be able to remember the word -- oh yea!!) sensation overload. I do. People rubbing up against me is the worst. It's like their energy, their *aura* -- however mystic you want to be or get -- but their energy crashes into mine and overwhelms me. The grocery store is the worst! The loudspeakers playing music, then asking for prices and announcing stuff all the time, the kids crying, the parents (what's the word) disciplining their children.....you know the routine. The lights are too bright. I have to walk too much. By the time it's all over I'm a shaking mess and having dizzy spells and cold sweats. I don't know if it is low sugar or if it's just too much stimulation. Either way, I'm drained when I leave. Then, I get to wait while the car is loaded with the groceries and then I get to ride home -- it's about a 30 minute ride. I don't drive anymore because the muscles & nerves in my eyes have now lost too much of their "tone" for me to focus when they are tired....ie, too much sun, too many reflective signs on the road...basically, any time.

So...By the time I get home and my mother gets the groceries put up, I'm wasted...no more. I go into my room and it's dark and quiet and pure bliss.

This trip only happens about once a month.....people have to practically prod me to get me out of the house. Now I'm wondering....is it agoraphobia ( I don't think so )? Or is it just because I know that the stimuli coming will be so much that it will make me physically ill?

I enjoy being outside when I'm not sick. I'll sit on the front porch (if it isn't 100 degrees outside). It's not actually walking out of my house that's the problem. It's the being around a bunch of people bumping into me, too much noise....you get the picture...

Do you fear becoming agoraphobic?

 

[Mithriel]

I have thought about this because I have been housebound for many years now and only go out occasionally.

I am sure it is different and we will not get agrophobia. For a start, you still go on your trips even if they make you feel bad. It doesn't dominate your thinking as you see the day approach, coming out in a cold sweat and feeling sick at just the thought of going out. This is different from a valid worry about how you will feel. Someone with a phobia knows there is no good reason to worry but still can't control it.

Like someone who has had a bad car crash and has to build up the ability to walk again, we may have to get used to crowds and sensations but that is different from a phobia.

Phobias get worse the more you do it, the anxiety builds until it becomes unbearable and also cuts in earlier until you are not able to even look out the window with agrophobia.

If we get a treatment you will be just fine

Mithriel

Rereading your post, you are describing perfectly what I think of as sensory overload. We can't sort out images properly so they all come at us at once.

Make sure your blood sugar doesn't drop you are using a lot of brain power sorting input. I used to find coca cola with its caffeine and sugar worked well for me so I would carry some in my bag.

I wear dark glasses outside all the time too.

Mithriel

 

[blazes]

Mithriel,
Thank you for replying. You're right. I don't really believe I'm agoraphobic. It just is something I think about and was wondering if others think about it as well. Was wondering if at some point worrying about the overwhelming sensations, the extreme fatigue and everything else we battle just for an outing becomes too much and the anxiety of it just has turned into agoraphobia.....I'm not sure how that works. I was just curious.

Thank you for the response about the sensory overload. Yes....things do come at me all at once. Even when it is just me & my mother. I'm sitting here typing this and she's trying to ask me a question....I just can't function that way anymore...it's too much.

Funny that you should mention the coca cola. I usually end up getting one when I'm out because I feel like I need the sugar. I don't know if it really helps. It's almost as if I may need protein as well. Have you noticed that?

Dark glasses are an absolute MUST. The sun is blinding. I just cannot handle it. Any bright light is blinding. It's like a stabbing pain. My eyes have become so sensitive....which is why I can no longer drive. It's just too much coming at me at once, bright lights (either from the sun or the headlights/reflectors of the street signs or road reflectors), having to decide which exit to take, if it's safe to switch lanes, is there a car behind me. I end up going into what I call my "blankout". I just kinda shut down and there is nobody home. Nothing computes. My eyes are open. I can talk to you but don't ask me anything complex because I'll only be able to answer the most minimal questions.

I'm learning so much here. It's nice to be able to talk to people who know what I'm going through and not think I'm faking it, a hypochondriac, or some sort of freak.

Be Well

 

[Misfit Toy]

It sounds like over stimulation and I don't hear fear in you. I have to go out regularly as I live alone. I have all of this and yet other times, it's not so bad. I worry more than anything that there are more times than not that I like to be home. I am just tired and sick though. I miss wanting to do stuff. I sometimes wonder if it's agoraphobia, but I have no actual fear of going out. It's just that I know I feel better in my "space." Like you, other peoples energy makes me sick, even good upbeat energy can be draining. What a feeling. I didn't have this 5 years ago. It sucks. I could be around anyone. Now I feel like a gauge or something.

Sounds the same for you.

 

[ixchelkali]

I agree that it's sensory overload, not agoraphobia. I get it even when I'm otherwise enjoying the experience of being out of the house. Not as severely as you, because I don't have light sensitivity. But the smells, the colors, the movement, the noise, they exhaust me.

So what would you call a fear of having agoraphobia? Agoraphobiaphobia?

 

[Sallysblooms]

I am inside a lot, but I LOVE when I can go out. I don't go alone because I can't, but I love when I feel good enough to go out to eat, to a flower nursery, etc. I do not food shop. My hubby does all of that. I never did like loud, crowded areas. I can't shop for long, over stimulation, so much to see.

It is great to get out to a quiet place and get some Vit D, I also take it in drops, I tested very low. I will be retested soon for that and other things. The sunlight felt good today. Not when it is too hot, but a cool day is great.

I am not afraid of agraphobia, I am always ready to get out and about when I can. Just not a noisy place.

 

[bluebell]

It's not agoraphobia

If you are curious, look up sensory integration disorder. My 4 year old has a severe case of this; the world is too much for him. His brain cannot process sensory information correctly and it causes all sorts of problems - most of them social.

I probably would have been diagnosed with a mild form of this disorder (if they had a name for it when I was a kid), but since falling ill it's been far worse. Actually, lately I feel like I am becoming autistic - have a difficult time looking people in the eye, responding in socially acceptable ways during conversations - this is totally new to me and so weird.

I am really hopeful that this will be shown to be the work of a pesky retrovirus. In any case, I don't think you have to worry that it is psychological. What you describe sounds neuro to me (my son sees neuros, not psychiatrists). Just hang in there. Maybe you could try yo time your visits to stores so that there are fewer people. I've noticed that fancy grocery stores have lower lighting and are less noisy, but of course most of us are poor and can't afford to shop at those places regularly...

 

[blazes]

Thank you, everybody! Spitfire, you're right. I'm not scared. There is no real *fear* and I do feel like a "gauge" of sorts for other people's moods/energy. Negative energy impacts me more....but anybody with a high energy level can take the wind out of my sails.

Sally, I do enjoy going out when I can. Like you, I can't go out alone either. My balance isn't good enough as well as my concentration being slim to none. My brain fog is like the South Texas weather...comes and goes so unexpectedly you never know when it's going to hit you. It's just not safe for me to go out alone...Not to mention I can't drive myself anywhere. Do you miss your independence?

Bluebell, thank you for the information about sensory integration disorder. I will look that up. I hear you about the fancy grocery stores...I love going in them (not here though...I don't live in an area where we have any).....but like a lot of us, I can't afford them.

I'm so glad I stumbled upon this forum. Thank you all for being so open and honest about your experiences.

 

[helsbells]

You know thats a weird thing for me to i have noticed since being ill, I get overwhelmed by people - not just the noise and stuff like you say but their energy. It is a weird thing I have borrowed a friends electric moniter (for electrical sensitives to check out the fields in their house etc) and for "fun" I put it up against people inc myslef - I barely record a score!! It is quite crude designed for big fields but everyone one else scored quite well. We joked I wasn't alive but a ghost. I was recently speaking to someone who lectures about this kind of stuff and he said if people were ill or really sensitive they could literally be messed up by someones frequency if it didn't agree with them. I think as well as the sensory overload and brain fog i think we are literally swamped by everyone!!

 

[maryb]

I wouldn't mind one of those helsbells, any idea where it was from? Just to check I still exist!! and I'm the one jumping away from cars receiving electric shocks with every else looking at me like I'm mad, be interesting to see what mine registered for that.

 

[unity47]

Hello,

New hear,and just read this thread,attemting to respond....but very challenged by technology...so hope it works!!

I too experience the sensation of being overwhelmed by other peoples energy/presence, I have felt this from when i first developed ME in 1992.[along with all those other sensory/neuro things,with noise,light,crowds etc,etc.]

I am on a very low pilot light today, poor sleep last night due to new symptom of being suddenly "jerked awake" by a jumping/spasmy feeling.....lasted a few hours ..then thankfully 3hrs sleep...anyone else have this?

It is great to read all these posts from this community,they bring information,help,support,and so many other benefits that my brain is unable to name just now!! ...brain fog is descending fast!

Kindest Regards to All......unity47

 

[helsbells]

I think my friend got it from here

http://www.powerwatch.org.uk/

I should say in reality these are for measuring quite powerful fields, to "scientifically" measure your own you would have to actually measure nano teslas I think he said, it was just just a bit spooky LOL I use the website for info though quite useful. Interestingly these people have had a run in with BG too who was calling there electrical shielding material quackery. They pointed out that the technology had actually been developed by the American military and not them there is also a site where you can can check your UK proximity to mobile phone masts which I have found quite useful. I give everyone electric shocks and get them too!! I actually saw a blue spark connect my finger to the lightswitch once

 

[helsbells]

Hello,

New hear,and just read this thread,attemting to respond....but very challenged by technology...so hope it works!!

I too experience the sensation of being overwhelmed by other peoples energy/presence, I have felt this from when i first developed ME in 1992.[along with all those other sensory/neuro things,with noise,light,crowds etc,etc.]

I am on a very low pilot light today, poor sleep last night due to new symptom of being suddenly "jerked awake" by a jumping/spasmy feeling.....lasted a few hours ..then thankfully 3hrs sleep...anyone else have this?

It is great to read all these posts from this community,they bring information,help,support,and so many other benefits that my brain is unable to name just now!! ...brain fog is descending fast!

Kindest Regards to All......unity47

Hi Unity I quite understand, i derive enormous benefit fromthis forum but the brain fog means I often can't adequately convey that appreciation, take care :Retro smile:

 

[Robin]

Do you fear becoming agoraphobic?

I fear not being able to go out! I've been really sick this year and haven't left the house except for doctor visits. Someone has to drive me and I lie down in the back seat. Most days I can't manage going up and down stairs so I'm cut off from half of the house. I have a little patio where I can sit outside but most days that's too difficult. I feel like Boo Radley.

I'm not afraid to go out at all, I miss it so much.

 

[HopingSince88]

I have some sensitivity to noise, and thus avoid situations that cause distress due to excess noise. I do frequently avoid different types of social situations because of overstimulation too. However, this is not the same as having agoraphobia. I know this because I have had 3 agoraphobic attacks and this does not feel anything like my need to avoid overstimulatoin.

During each of my 3 pregnancies in the 2nd trimester I found myself at some kind of 'marketplace.' Once I was at the Big E (which is a huge agricultural fair in the Berkshires), once i was at the Londonderry Fair (an indoor Christmas fair in Boston), and once I was at Jason's (a nightclub on Cape Cod.) In all 3 cases I am sure that hormones brought on the attack of extreme panic which culminated in an episode of hyperventilation. Once I was out of the 'crowd' I was fine. It has only happened to me on those 3 occassions. It has been nearly 30 years since these attacks, and it is nothing like what I think we experience in avoiding overstimulation.

 

[jimbob]

I'm not agoraphopic, but other phobias in the past several years have cropped up. fear of heights was never a problem when I was healthy, now it scares me to death! Same with being claustrophobic. The worst feelings though, are the scared feelings the past few years. I worry about odd stuff like a car crossing center line and being hit, a loud plane overhead that it might crash into the house and other strange fears that the old healthy me would never contemplate!

 

[blazes]

When I mentioned the "energy" of other people feeling like it was "crashing" into me and overwhelming me, I didn't realize it was like that for others. The funny thing is that a few of my sisters I can hardly stand to be around because they are so chaotic....almost ADD...but not. They are just so full of energy and all over the place that its too much. When my daughter comes over, it's like she understands what I need and when she sits down next to me I just want to curl up in her lap. My mother's energy isn't as calming....it just is.

Do you notice your family members' energy having any adverse affect/effect (I can never get those right so you pick which one lol) positively or negatively on you?

 

[helsbells]

Deffinately one family member I find very tiring but thats just the way its always been, its difficult too when you love people but undertsand this connection is difficult. Sometimes its not just thats its chaotic, although that does't help but they can also be needy. When I was younger I deffinately attracted needy people and am a bit better at feeling it now. But even now, maybe as I have Aspergers I find people generally needy, not people here funnily enough just in general, usually well people LOL Also weirdly really heavy energies, some people who are actually sincere and supportive but quite serious with not much sense of humour just seem to tire me. I think by nature I am not a terribly serious person and spending too much time with that time of person can be a bit flattening. Gosh I sound terribly difficult to please, oh course pre illness I entertained all types. Having a daughter is in itself is wonderful, but having one who is so centred she makes YOU feel calm and relaxed is doubly wonderful.

 

[Athene]

I just wanted to say that this sensory overload is really horrible and is definitly not agoraphobia.

My sister has agoraphobia - fear of crowds not open places - and I have seem her having an attack. We were on a crowded bus and she couldn't get off, and I could see her eyes darting like a caged lion as it built up. She exploded and started hitting everyone, pulling people's hair, screaming like a banshee.
It was a build up to hysteria, whereas this sensory overload just makes me feel crushed by the whole world.

You can get an improvement if you change your diet. Giving up gluten and dairy made a really big difference to me.
Drinking lots and lots of alkaline mineral water also helps (at least 3 litres a day, the more the better).
Also cutting out chocolate helps. Caffeine also needs to go.
(The foods I have mentioned have neurotransmitters in them).
Strip lighting is very bad which is why supermarkets are the worst places. I wear my dark shades when I have to go into the supermarket. I have occasionally resorted to sticking in ear plugs as well when it gets really bad.
I find hanging around agitated and un-relaxed people is bad for me.

Much the best thing is to avoid anywhere that is too stimulating. If I yearn to get out of the house, the best thing for me is to go and visit a calm and soothing friend at their home.

 

[ixchelkali]

I wouldn't mind one of those helsbells, any idea where it was from? Just to check I still exist!! and I'm the one jumping away from cars receiving electric shocks with every else looking at me like I'm mad, be interesting to see what mine registered for that.

Hmmm, I keep getting shocks, too. From my cat, my husband, the doorknob, the car door... My husband & I joke about my reverse polarity. He doesn't feel the shock, but sometimes it will actually arc with a noticible POP. It's another one of those weird thing I don't mention for fear people will think I'm really nuts.

Hello,

New hear,and just read this thread,attemting to respond....but very challenged by technology...so hope it works!!

I too experience the sensation of being overwhelmed by other peoples energy/presence, I have felt this from when i first developed ME in 1992.[along with all those other sensory/neuro things,with noise,light,crowds etc,etc.]

Hello, Unity47. You may be new to this forum, but clearly you're not new to ME/CFS. Welcome.