Below is the text from the Youtube video #2…..I hope some of you find it helpful…. You can see the video by going to youtube and typing in my name (Ellen Isaksen)….I hope you are all happy and healthy!
Hi there…I’m Ellen Isaksen and It’s nice to be back here in part two of my series “Coexisting with Agoraphobia, Anxiety and Panic attacks. Since I know that most of you watching are either challenged with agoraphobia or some kind of anxiety disorder or are a loved one of someone who is I feel like I am among friends
I’d like to start by saying that what I think makes my videos and information different is that I am not offering a cure here but rather, just as the title of my series “coexisting” with Agoraphobia, Anxiety and Panic Attacks implies, I am trying to offer ways to live alongside it/ or “with” it or to just make ROOM for it to just “be” while it is here. To suggest that you embrace it might be a little far out, but that’s the general idea. That doesn’t mean it will be here tomorrow if you find something that works for you, it just means to ACCEPT life as it is today while you are finding your way to healing. Swimming upstream and fighting against “what is” only seems to work for salmon!
If you watched part 1 of my series you will know that I have been living with this challenge (my preferred word for “it”) for over 5 decades. I have been all over the place with it…been in and been out and been in between. There was even a time when I was first “hit” with massive anxiety that I had to have my meals slipped to me under my bedroom door because I was so terrified of the outside world….and to me at that time “outside” meant anything outside my bedroom. I’ve come a long way since those days, but am still to this day challenged with this disorder. The difference these days is that I know what I have and after trying so many different remedies for it that didn’t work, I have just made peace with it.
Recently a reporter from the Tampa Bay Times found my memoir, “Behind These Eyes: One Agoraphobic’s Journey to a Meaningful Life” online and asked me if I’d be willing to do interviews so he could write a story about my life . As a result I had to think long and hard about what my life has been like and what I have learned etc…I felt all that information might help someone else so here I am. I’ve had a career, relationships, and now have a business, but still life is challenging, even VERY challenging at times. The more I try to stretch out of my comfort zone, like anyone else, the more challenging it becomes!
In my first video I explained a bit about how I functioned for a long time in the outside world by abusing alcohol. My book tells this entire story if you’d like to know more about that aspect of my life. I spent a short time in my career as a counselor in a cocaine rehab unit and I can tell you here that abusing substances is not the answer…..it only creates another problem. Unfortunately for me I went over 25 years undiagnosed and used alcohol to self-medicate. Fortunately for me, when I found out what I had in the early 80s I was able to give up the alcohol and pursue other methods to help myself.
I expect my videos will be like a quasi-journal….part informational and part real life daily accounts of actual events in my life. In this second video I’d like to talk a little about quirks, traits or idiosyncrasies that are typical to many people who suffer with anxiety disorders….
OK, so here we go….
1. First… A lot of agoraphobics won’t take meds. For me I became medication phobic after experiencing a lot of adverse reactions back in the 70s… We generally have very sensitive nervous systems and various other sensitivities. For me a sensitivity to drugs is one of them. When I HAVE to try to take a new medication the best way for me to ease into it is to actually shave the pill with a razor and take in in tiny increments until I see if the pill will agree with me or not. You can even just dip your finger in the powder of the pill and put a little on your tongue if you like. If a little works out ok you can take more. Doing things in small increments and baby steps seems to work best with us for most things.
2. We need control in certain situations, especially in new situations.. For many (but not all ) of us we had times in our lives when we felt control of our lives was not in our hands. We may have been abused, had a serious illness or other trauma. I believe that is at the bottom of a lot of our fears. Today If we are in a situation where we feel we have no choices (or feel TRAPPED in ANY WAY) we panic. It is helpful to remind ourselves that we are adults today and have complete control over our lives and keep repeating that over and over. I always like to point out that we are NOT trying to control other people even though it may at times appear that way. We are simply trying to set up or control a situation (which may include other people) so we can make it doable. If we can’t see it as manageable in our minds then we simply cannot do it, so we need to take steps to lay things out in a manner that makes us able to envision it as possible. There is a very definite, albeit subtle difference, but a very important difference and one I hope others will be willing to accept about us.
3. We can feel trapped in even the most common of confining places … even in the home ..For example: the shower, dinner table, elevator, talking to visitors or neighbors, waiting in supermarket lines, doctor’s or any office etc. We can feel trapped in most any “have to” situation where we feel we MUST do something and have no out. Ordinary everyday tasks can cause us much anxiety because we feel confined by them.
4. Light/sun and sound sensitivity: I did not know at first that this was an issue for me and was so relieved when I found out that light and sound sensitivity was common for people with anxiety disorders. I live in Florida and at times just walking out to the mailbox can trigger anxiety. Fluorescent lights in stores can also be great triggers. Sudden changes in lighting or sound can also trigger a lot of uncomfortable feelings for me. If, for example, a cloud passes over the sun it can quickly change my mood from calm and peaceful to scary. We are extremely sensitive people who can easily be OVERSTIMULATED and we need not be ashamed of it … it is just our makeup. The more we recognize it and simply accept it the better we will be able to make peace with ourselves.
5. We often need to do things or even see people in small increments. This again relates to how easily we can get emotionally overstimulated. If we re socially phobic we may need for people to come and visit for only short periods of time, especially if they are new people in our life. If we are trying to do a task we could not do before (driving for example) we may need to try in tiny increments to get out again. I’ll talk much more about this in my video on systematic desensitization in the near future (video #4)
6. EVERYTHING we do is overshadowed by anxiety and the first thought in every situation is how much anxiety will this trigger? We have to think about almost EVERYTHING we do before we do it in terms of what price we will pay with anxiety for doing it. We live with fear of having to go to hospital etc….or the dentist. We also live with a constant underlying fear that something in any given day will happened that will bring us back to the worst time of our life anxiety-wise. If it is not in the forefront of our minds it’s a constant undercurrent and it can be exhausting. Sometimes anxiety is the only emotion we feel and it is used to cover other emotions. Believe it or not anxiety can even be trying to help you by not allowing you to feel those other feelings (like anger) that you might be afraid to feel. Learning to identify and feel all of your feelings can be very helpful in helping anxiety to ease.
7 People with anxiety to the degree we have it are always focused on how they feel. It can be a very self-centered disorder. It’s like you have to be prepared at all times for the body to betray you and throw you into panic. Often it seems to come totally out of the blue. Triggers can be unconscious. – I am as surprised as anyone sometimes when I get so nervous in a situation that I was perhaps even looking forward to! I don’t sit and say, “oh this is a horrible scary situation”… I’m just going about my day and maybe even looking forward to an event of some kind and then BAM I can be overwhelmed with anxiety. Sometimes it can take days to “recover” from a big event.
8.Sometimes we have to do things in the exact moment we feel we can. i.e. Me jumping in car to see if I can go around the corner. On the other hand we may have to really plan out things so we can see them as manageable in our heads. If it’s an event we may have to know what our escape route is (i.e. sit in the back seat of church). If it’s an event in our home we may need to know someone else can take over for us in the event we have to leave the room or can’t complete a task like cook dinner).
9. Change of any kind is hard for us. We love the predictable….too bad life doesn’t usually work that way. I love the teachings of Buddhism myself but I go kicking and screaming when I have to look at their concept of the impermanence of all things! A counselor friend of mine told me when I am at my worst to not even wear a new blouse because it could throw me into more anxiety. I came to realize this even more with Zack (the reporter) when he asked me how I choose what I wore every day. I realized that I used to put something new or newer on when I had company then I noticed I reacted to doing so with more anxiety because my body knew something was UP! Now I just pick something familiar and comfortable in new situations.
8. It’s hard for us to make commitments because we never know how we are going to feel on a given day. We make a commitment on a day perhaps when we feel OK and then the day comes and we wonder what we were thinking! Our body betrays us and we are saddened and frustrated and feel like a failure. Please try to remember here that you can only do the best you can do…..even just trying is a triumph! Just because it is hard to make a commitment doesn’t mean you shouldn’t make one and try to follow through. For me, the minute I get out of bed do everything I can … for example, the garbage and mail go out in case I can’t do it later. It’s not always how you feel on a given day, but in a given minute!
** I’d like to point out here that some of our responses may be out of our control. I Know myself I have tried EVERYTHING I could find to overcome this disorder but have had little permanent luck. There are studies being done as shown even in the new TV Series “Black Box” that show that people with agoraphobia for example have abnormally sized amygdalas in their brains. The amygdala is the fear response part of the brain. Goolge it and you will find some interesting studies!
7. At times /periods of severe anxiety we might keep items we may think we need close by for fear we might “freeze up with fear” and not be able to get what we need…especially at night. Next to the bed we might have food, cool rag, water, medication, phone and phone numbers, porta potty and bucket. It’s like we have to make a little safety nest in case we become immobilized! We are good boy and girl scouts and think we always have to think ahead and be prepared!
9 We are usually loaded with anticipatory anxiety and “what if” thinking……for example, if I know I am going to be very busy next week with potentially anxiety-provoking events, I sometimes can’t do much THIS week thinking about next week. Trying to learn to live in THIS moment can be very helpful. Mindfulness meditation has become very trendy these days and can be very helpful with this.
10 When you are anxious it’s hard to talk about where you are at and when you are calm you don’t want to talk about it ‘cause it might make you anxious!!
11 Getting medical attention is often difficult. We are afraid of what the doctor will find and if we will be able to handle it. Some of us, however, if we can get out to a doctor like to go often to be reassured that all is well and what we are feeling is only anxiety. I myself, at this point in time, refuse to get BP taken due to anxiety…..it scares me to know it because maybe they will make me take meds that I’ll react to and have to go to hospital which I perceive as worse than having high BP. Truth is my BP is very high when the doctor is here just because he is here in the house so it is impossible to get a valid reading. Medical attention can be challenging for sure!
***I’d like to make a request here that if anyone, in any state has services performed in their home for anything that they pass that info along to me via email. I am starting a section on my website (http://living-with-agoraphobia.com) with a list of doctors, dentists, and ALL kind of services that come to the house. Mobile services are so valuable to us and there are not enough of them.
12 Most of us seem to have a Need to be organized. A lack of control inside creates a need for control of “things” outside. It may even border on a compulsive type behavior.
13 It may take us a long time, especially if we live alone (which is not all that common) to do home repairs….ie replace a bathroom faucet. We don’t like people coming into our “safe place” especially when we don’t know how long they will stay. We’d rather put up with a bad TV picture than call the cable guy!
14. If we are socially phobic we may dread the holidays because they are “have to” gatherings. Birthdays as well can feel more threatening than a joy!
15. Our “self-talk” is usually scary and includes catastrophic thinking or “awfulizing”… This is a case where having such wonderful creative and imaginative personalities can work against us. We imagine all kinds of horrible scenarios for ourselves and get carried away with “what if” thinking. Again, trying to stay in the here and now and think only about what we are doing in any given moment is a great way to combat this. After all, THIS moment is the only one we really have and we need to take full advantage of it by staying present for it.
I have mentioned here several ‘quirks’ we might have in common…Yes, we can be very sensitive and at times over reactive and may need to reel in our thinking from time to time, but we are also people who:
…..can be a lot of FUN to be around with outgoing personalities (seems like a contradiction if we are homebound, but I AM that way)
…..are very creative and imaginative in the best of ways
…..are very loving and loveable
….. are very interesting
…..are very intelligent and have very high potential
…..are very ethical
So, it is important to know that we are so much more than our anxiety. The anxiety is just one small part of the whole that is “us”…..please always try to keep that in mind so you can continue to develop all the other sides of yourself.
I’d like by just saying “Namaste” which is a Sanskrit greeting still in everyday use in India.
Roughly translated it means….”The spirit within me salutes or bows to the spirit in you.”
Have a great day and see you next time in Part 3.