Sunday, 29 July 2007

Syncope, Reflex Anoxic Seizures and Agoraphobia

On 11th July, my littlest offspring, Orla, was 2 years old.

But all is not well. She's been having seizures.

About six months ago, Orla bumped her head on the desk on which I do some of my office work. She screamed and ran out into the hall. Marie rushed to see her, comfort her. I was making a cup of tea at the time, heard Orla, but knowing Marie was going to see to her, carried on making tea. There was a silence - a total silence - and Marie called for me, panic in her voice. A second later, Orla screamed again, and continued to cry. I was running to Marie and Orla and took Orla in my arms, trying ineffectively to comfort her. Marie told me how Orla had just dropped to the floor as if dead and was turning blue before she sarted to cry again.

Ten or fifteen minutes later, Orla was mostly ok. Another fifteen minutes and she was totally ok and playing boisterously with her brother. It was almost as if the whole thing hadn't happened.

A couple of months later and a similar incident happened again. I took Orla to the doctor. He told me that he believed that Orla had had a fit. It was outside his field of expertise so he was going to refer her to a specialist. It was nothing life-threatening, he assured me.

The third seizure happened a month later when Orla fell off a chair, but this time less intense. We waited for the specialist's appointment.

The fourth seizure happened a week ago when Orla fell while running across the living room. This time, although she dropped to the floor, she immediately started to cry. No blue face - a white face instead. After the usual spell of crying she was quiter than usual, but an hour later, everything was normal. Still waited for the specialist's appointment.

But yesterday she had two seizures. Both were the "small" variety, but only an hour apart. On the second occasion, Orla was with me and other members of my family. We were going to a children's carnival - an afternoon of various activities for children (they were allowed to be accompanied by well-behaved parents). After her seizure, Orla was very white-faced with dark eyes and looked quite unwell. My first reaction was to take her straight to the emergency department of the nearest hospital, but Orla really wanted to go with the other kids. So I decided that, as long as she didn't have another seizure or seem to get worse, I'd wait until I got home and then ring the emergency doctor. It took her an hour to regain her normal activity level, and a couple of hours to regain her normal facial colour.

I rang the emergency doctor as
soon as I got home. Marie rang her mother. I struck lucky - he recognised the symptoms. He suggested that I look for "anoxic seizure" on the internet for more details, and he told me that Orla was not in any imminent danger, but I should contact my regular doctor asap. My internet search produced the Stars website - extremely informative and helped to reduce my anxiety about the situation.

Marie also learned something interesting - she had had similar seizures when she was small. As she got older, they reduced in frequency and eventually ceased entirely. Her parents' doctors didn't know what caused them. The Stars website informed me that this condition is often hereditary.

Here's an interesting quotation from the Stars website...

"Over 70% of sufferers of syncope endure depression or anxiety because of their attacks, and a similar number alter their daily activities to avoid the risk of blacking out in embarrassing or dangerous circumstances. "

Doesn't this look like a cause of agoraphobia? Marie thinks so. The origin of her anxiety condition has always been a mystery to both her and a succession of childhood therapists. Her parents, who had no knowledge of the precise nature of Marie's condition, reacted to her seizures by becoming overprotective. She was told that she was "delicate" and was prevented from some school activities because she "wasn't strong enough" to participate. She was encouraged to avoid situations where a sudden "faint" could be dangerous to her.

This behaviour pattern became her "normal" behaviour pattern. It's not exactly a giant step to go from that to agoraphobia.

I wait to see what Marie might do with this information...

Monday, 9 July 2007

Agoraphobia expands into the space allocated to it.

"A job will expand into the time allocated to it."

You can get this sort of wisdom from business management books. basically, if you give 2 men 3 hours to do a job - a job which should only take 2 hours - they will take the whole 3 hours to complete it. As soon as they realise that they will finish the job early at their current level of work, they slow down. It's not even deliberate. It's just that they expect the job to last 3 hours, because that's the amount of time allocated for it; so if they look as thought they might finish early, they must be working too fast, and they unconsciously slow down to compensate.

I have observed Marie's agoraphobia for 7½ years, and I have adapted the maxim to apply to her agoraphobia. As follows -

"Agoraphobia will expand into the area allocated to it."

Marie's agoraphobia is not stable. It grows and recedes, gets better and gets worse. But it never - NEVER - gets in the way of something life-threatening/very important/very much desired by Marie. Examples -

  1. 1999. Marie cannot get into ANY large shop. Marie needs a new bed and wants to choose it herself. We go to furniture stores. They are LARGE. Marie is scared, but stands at the entrance, fights the panic, wins, goes further into the store, fights the panic again, goes further in, fights the panic again, gets to the back of the store where the beds are... Next store, less panic at the entrance, makes it down the store more easily... Final store, beds are up the stairs at the left hand side of the store to the first floor and down to the back wall and half-way across the width of the first floor - Marie makes it! A couple of weeks later - can't get into the store...but then there's nothing she really wants there...
  2. 2000. Marie gets pregnant. She is suffering from quite severe 1st trimester sickness which makes her feel panicky. Her immediate reaction is to have a termination. Then, after some consideration, she decides that she wants to have a baby with me. Once she has decided this, she is able to cope with the panic feelings
  3. 2001. Marie can't get into hospital. Any hospital. But she really wants her copes with hospital.
  4. 2002. Marie can go most places by car, but cannot use public transport. When I decide to go to Ireland to see my ill aunt, Marie decides to go too. This means two ferry trips and ferries = public transport. Once on a ferry, there's no way off until it berths. A panic attack sufferer's nightmare. But Marie really wants to go with me. She is prepared to risk the possibility of a panic attack. In the event, she doesn't have one.
  5. 2003. Marie has a number of "safe" people, and she has to have one of them near her at all times. But she really wants her driving licence, so she gets in her car with a man she has never met before (the driving test examiner) and shows him how well she can drive. She didn't pass her test the first time, so she repeats it - with a different examiner. No panic attacks... Since then she has never been in a car without a "safe" person. Can't do it...
  6. 2004. Marie's sister's wedding - Marie really wants to be a bridesmaid and attend the reception. The reception is in a large marquee with more than 200 people there - normally somewhere that Marie would totally avoid. But she copes. And without panic...
  7. 2005. When, during her pregnancy with Orla, Marie was told that she should go deep into the bowels of the hospital to have an emergency scan, she does it. Yes, there were panicky moments. There were times that I wasn't sure that she would make it - but she really wanted to get there. And she did!
  8. 2006. Two weddings. Marie was quite anxious about getting through our wedding day. But she really wants to have the perfect day - and she gets it. The 2nd wedding - Jenna's - she couldn't cope with the journey to Ireland to attend (perhaps she didn't really want to go), and she was very anxious about me going without her. She had severe anxiety for several weeks leading up to the wedding. However, from the moment I left for Ireland until the moment I returned, she was fine. No panic attacks whatsoever.
There are more examples like the eight above, but NO examples of Marie NOT being able to do something she really wanted to do - because her agoraphobia got in the way.

So I'm thinking, Marie is actually allowing her agoraphobia to exist in her life. I know that she would prefer not to have it at all, if there was an easy way to remove it. But there's no magic wand which will make it go away. So I'm thinking, what does it take to make her want, really want, want so much that she will be prepared to take the pain and stress and effort to get rid of it?

Thursday, 5 July 2007

2007 - Getting out more and introducing Sharyl

My beautiful neice, Sharyl
Sharyl is my niece and she's 17 (she will be 18 in the autumn). When my sister lived in this area, so did Sharyl, of course. She was doing holiday jobs locally since she was 14. She started working for me at holiday periods and weekends a couple of years ago - just before my sister moved her family 50 miles away to a village in the middle of nowhere. Sharyl never adjusted to the move, and there was much less opportunity to get a part-time/holiday job near her mum's new home, so she started staying with Marie and me at weekends and during the school holidays. She gets on with Marie really well. Joseph and Orla (especially Orla) like her loads and she's become part of the family.

Orla surveys her world...
from as high up as she can get!

And now she has become a "safe" person for Marie - even though she doesn't drive. Thus, more freedom for me. This is a great boon because our children didn't ask to be born with an agoraphobic mum and I feel that it is important to have it affect them as little as possible. Although it would be better for both parents to take them out on exploratory trips and fun leisure trips, the fact that I can now take them most places I would like to is a great relief to me - and to Marie.

Joseph, Orla and I walked a couple of miles to get to the highest point in Somerset. (Okay, Orla spent some time being pushed in her pram...) No sign of habitation in sight - it's a wonderful feeling of freedom!

Joseph loves the steam engines which puff through our town, especially during the tourist season, on a 25-mile stretch of track.

And the playgrounds are a constant source of entertainment and exercise (especially for me!).

2007 - Current Level of Agoraphobia

Marie cannot-
  • Be alone at home at any time - except (new!!) for a few minutes while I go to the nearby convenience store. There must be a "safe" person in the building, where our home is, at all times. There must be either her car or mine parked outside. I must have my mobile phone with me - but (new!!) if I go into a building with a landline (e.g. a swimming pool), I don't have to have access to my mobile all the time (so I can go swimming)
  • Walk outside our building except to get into a car
  • Walk more than 2 metres (yards) from a car
  • Go anywhere except by car, with a safe person
  • Go into any large building - e.g. supermarkets, the doctors' surgery, hospital, office blocks
Marie can-
  • Go almost anywhere by car with a "safe" person (except remote areas).
  • Stay at home without me but with another "safe" person in the building, and (new) that safe person doesn't have to be a driver
Her OCD remains unchanged.

Marie's agoraphobia continually changes. When I look back over what she could and could not do in 1999, 2002 and 2003, I wonder what it is that affects Marie's condition... It will improve in some areas while simultaneously get worse in others. One area which started to improve towards the end of 2006, and continues to improve, is Marie's ability to stay at home without me. I can now go to the local Co-op in the evening if required. This is a first, since Marie and I got together. Also, during the day when I have staff working in the premises adjacent to our home, I can go to nearby towns while Marie stays at home. And at weekends, when Sharyl is here, I can take the kids out to the beach, the park, shopping, the swimming pool, etc.

Which leads conveniently to...introducing Sharyl.

Wednesday, 4 July 2007

2007 - A new nephew

Marie has 2 sisters. They are both older than she is, yet neither had any children...

...until this year.

Kim, the middle sister, who got married 3 years ago, gave birth to a lovely boy.
Although the birth was by way of an emergency caesarian section, mother and baby were both fine within hours.

Due to her current level of agoraphobia, Marie was unable to visit her sister and new nephew in hospital. However, within a few days of the birth we drove to their home on the south coast of Dorset to see the baby - named Sachin after the Indian cricketer - and the proud parents.

A proud Gary with his firstborn son

Kim was very relaxed with her baby while her husband, Gary, beamed with pride non-stop

Orla liked stroking his head
Our children were fascinated by the new arrival. Joseph enjoyed looking at Kim's c-section scar (actually, quite neat) and observing Sachin breast-feeding. Orla, who had been practising saying "Baby Sachin" for the previous few days, gently stroked his head and loudly voiced her delight whenever he opened his eyes.

Paternal me!

I got to nurse Sachin quite a lot and all the paternal feelings I got for each of my (7) children came flooding back.

Marie was content just to observe the proceedings and was relieved that her anxiety wasn't bothering her.

Looks good, even when asleep

A good time was had
by all!