Agoraphobia diary: a journey in 2018

Warm greetings to all readers. Some of you may remember a short trip I made by bike to Morecambe Bay a few years ago, during which I stretched the boundaries of my agoraphobia. Today I’m starting a new challenge: the most demanding and complex journey I’ve ever made on my own. It will use all the skills I’ve slowly been working on throughout my life, including planes, cars, and trains. I’ll also be staying in three different places, and having some painful hospital treatment, just to add an extra touch of excitement and exhaustion. As well as living with agoraphobia, I have chronic fatigue, chronic depression, and chronic migraine, so the whole project will be taxing in a variety of different ways. During this 7-day trip I will post a series of short, honest reports on how things are going.

Day one 

Today my husband dropped me at the Isle of Man airport for the half-hour flight to Liverpool. All went well, though it was a very fast and bumpy landing. However, when I reached the arrival area, my taxi driver wasn’t there. For a few moments I felt completely alone and lost, with no idea what to do. Then I got out my phone, called his company, and made contact with him. He arrived about 15 minutes later, and I was soon safely in his car, but this experience was extremely stressful.

Traffic on the motorway was very heavy, so after a lot of long queuing, we turned off on to narrow country roads instead. It was picturesque, but this diversion made me very anxious and vulnerable, as I had no idea where we were. A journey that should have taken about two hours took three, so I had to exert myself to relax and let it happen. The driver was listening to pop music on his radio. I used my headphones in an effort to block it out, and tried to sleep, but the insistent drum-beat was most unpleasant. After lengthy inner rehearsal, I finally managed to raise the subject just as we arrived at our destination, having previously felt I couldn’t possibly say anything direct about it at all. This felt like a major achiement.

So, here I am at my hotel in Ely, very tired, but pleased, overall, with how the day has gone. Tomorrow I’ve been invited to go to Cambridge with my son’s family. Before I got here, this excursion had already been suggested, but felt impossible to face. However, I have now agreed to go, because I know that “flooding” is often the most effective way forward with agoraphobia. It would be so much more comfortable to cling to the safety of my hotel room and the familiar surrounding streets!

3.30am on day two

Managing the inevitable challenges of day one resulted in a headache and a really bad anxiety dream, so I’m writing this post at 3.30am, whilst thinking about the day ahead. My main worry is that I will have to travel about 20 miles in the back of my son’s car, trapped between my two grandsons and their large, fixed child-seats. As yet, I don’t know if the car’s automatic child locks will be engaged, but all aspects of this scenario are a torment to me. I have clear memories of instantaneous panic in enclosed situations throughout my life, starting from before I was 3 years old. It’s taken me 65 years to manage this fear relatively well on aeroplanes, but my fear of being trapped in a car, lift, or toilet cubicle is still very bad. Anyway, thinking all this over, I’ve decided to tell my son how I feel about the proposed trip. He would then understand if I have to ask him stop and to let me get out.

Finally, I haven’t mentioned yet that any journey in someone else’s car means going away from relative safety, and having to wait until the driver is ready to return. In such situations there is always a risk that I will have to deal with a panic attack without a quick escape route that is under my own control. In order to avoid this particular anxiety, I routinely turn down kind offers of lifts, even though I know that avoidance of feared situations maintains and strengthens all phobias. Maybe I should now think about reviewing that policy, or at least being honest about the reason for my refusal. Agoraphobia is nothing to be ashamed of, after all.

Day two

After texting my son to explain my fears about sitting in the back of his car, I managed the trip to Cambridge fairly well. Being honest about how I felt was a huge help. The only time I was really uncomfortable was when we were looking for a parking space in busy side-streets. I felt I might never get out of the car, but hung on to my courage, and coped.

The object of the journey was an archaeology open day. This took place on a large, semi-rural, outdoor site, and was quite crowded. The only bad moment was when I couldn’t find any member of my family.

Afterwards we had a picnic by the river Cam, watching the boat crews of several colleges practicing their drills. My most triumphant moment of the day came when I herded a large, aggressively-hissing swan back into the river several times. It came astonishingly close, and was taller than my grandchildren. This was an unusual thing for me to do, but perhaps by then I felt I had nothing left to lose!

As I got more tired, I began to long for some security and a rest, so was very pleased when I eventually got back to my room, made a drink, and fell into an exhausted sleep.

10am on day three

This morning brings a chance to catch my breath. I slept well, with only one anxiety dream, an improvement on the night before. The plan is to walk to my family’s house, have lunch together, then drive the short distance to one of my favourite places in the world: Wicken Fen. Hopefully, this excursion will be less testing than the one to Cambridge. I’m already deeply tired from the cumulative effect of facing feared situations on top of my chronic fatigue.

Anyway, for now, there is time for a pot of tea and some contemplation, before plunging into the day’s activities.

Day three

Today has been easier to manage, as anticipated. The effort needed to tolerate my anxieties is very wearing, so I knew I needed to be upfront about that with my family, and not do too much.

After a quiet morning in my room, I walked a longer way round to their house, which meant crossing a large playing field. This might not sound very significant, but as I was doing it, I reflected on a dreadful panic attack I experienced whilst crossing a grassy area about 40 years ago. At the time, I had no idea what it was, or what had caused it. The strength of the fear was enough to precipitate instantaneous avoidance of going out alone. Of course, I now know that avoidance strengthens phobias, but at that time I had everything to learn, and no internet to fall back on. A few weeks later I confided in a hospital physiotherapist, asking her if she’d ever heard of anyone else feeling as I described. She gave me a strange, hard look, and said that she’d never known anyone at all like me. Sadly, it was many years before I mentioned my fears to anyone again.

Anyway, enough about the past. After lunch we went to Wicken Fen, as planned. It’s a beautiful nature reserve of water, reeds and woodland. I drank in the views, storing them in my memory, so I could imagine myself there again, at will.

This evening I’ll be taking the family out for dinner. It will be noisy and busy, but the restaurant is only about 200 yards from my hotel, so it shouldn’t be too challenging. I’ve practiced eating out often enough to be pretty confident of coping, and will be using my standard techniques of patient endurance, going to the loo for a few minutes alone, and secretly holding on to the wooden cross I keep in my left-hand pocket!

6.30am on day four

It’s amazing what trivial things my mind can attach its much deeper anxieties to. As the time with my family draws to a close, I’m ruminating endlessly about my dirty washing. Before arriving in Ely I sent some clothes ahead, to avoid having to manage a heavy suitcase on my own. Tomorrow I will be leaving for the next leg of my journey, so I need to ask my son to post the dirty ones back home for me. This seems like a dreadful thing to ask, and I’ve been worrying about it for days. If at all possible I avoid asking anything of other people, in case they reject me, as my mother did. I guess this partly explains why I never developed the confidence to cope fully with life.

Anyway, the plan for the morning is to meet in a coffee shop, then visit Ely Cathedral. Although I’ve been there several times, and love it dearly, I’ve only once, many years ago, gone past the barrier where people pay to enter. Normally, I confine myself to the free side-chapel for private prayer, and the excellent shop. Spending money to explore the whole building seems so extravagant that I’ve never overcome this inhibition. Hopefully, I’ll do better today.

Day four

Today hasn’t been too bad. I checked out the charity shops and my favourite kitchen outlet, then met my family to visit Ely Cathedral. Paying close attention to my two small grandchildren in a huge public space helped to distract me from my fears. Between us, we managed to watch the boys whilst taking in something of the beauty surrounding us.

We had lunch in the busy Cathedral café, then the boys had a run around outside on the grass. I was beginning to tire, and was longing for a rest, but the family wanted to show me their favourite charity shop. Again, I forgot myself for a while, whilst helping one grandson to read aloud from a book about weapons and armour. The inner process of deciding how much further to push myself is a very delicate one. When I’m alone, of course, I only have to stay anywhere for as long as I wish.

Eventually, we left the bookshop, and said goodbye to one another. I exerted myself to do a small amount of shopping, then returned to my room, where I immediately fell asleep. Today feels like the calm before the storm. I’ve got used to my room, and feel safe here now, always pleased to return to quietness and rest. However, tomorrow I will leave this new-found security and travel to Leicestershire, where I will stay with my sister, and visit my 101-year old mother in her nursing home.

8am on day five

The most challenging parts of my trip begin today. My son will drive me from Ely to Leicestershire, where we will arrive at my sister’s house by late morning. After lunch he will return, whilst my sister and I visit our mother in her care home not far away. This might not sound terribly difficult. However, being with my mother is always very stressful. My agoraphobia, depression, anxiety and low self-esteem all date back to my very earliest memories of her emotionally abusive behaviour throughout my childhood, and far beyond. Over recent years I’ve developed a few coping techniques to help me through these visits, but I still dread spending time with her.

6pm on day five 

After an early breakfast, my family came to say goodbye, then my son and I travelled up to Leicestershire, a journey of about two hours. It was interesting to notice that I felt fine until I saw the first road-sign for the town where I grew up, when a sharp pang of anxiety automatically shot through me, triggering a familiar sense of dread.

My sister and her husband made us very welcome for lunch, then my son left, and I fell asleep for a while, very tired after the journey, plus the cumulative efforts of the previous few days.

Next came the hardest part of the day: visiting my mother at her nursing home. My sister dropped me off there, and I sat alone with her for about 40 minutes. She is bed-bound, and remained asleep, so I sat quietly, observing both her, and my own feelings. Even though she is old, deaf, immobile and blind, I dreaded her waking up and speaking to me, so I didn’t address her, approach her, touch her, or make any effort to wake her. Instead, I tried to pray.

When my sister returned to pick me up, I left the nursing home with relief. Tomorrow’s visit may be more difficult, though, as there is always a risk that a well-meaning staff-member might try to rouse my mother. She’s so deaf that people have to shout into her ear when they want to communicate with her, and that means getting very close. However, I have learned to keep my arms behind my back, with my hands firmly clasped together, so she can’t get hold of me and pull me towards her. This gives me a sense of retaining some degree of control over allowing her to intrude on my body.

7am on day six

The weather forecast is much better for this morning than for the afternoon, so my sister and I plan to go for a walk before lunch, leaving our visit to the nursing home until later. I would have preferred to get the hardest part of the day out of the way first, but it can’t be helped.

I’ve suggested a large local deer park for our walk. It’s a place we often went to when I was young, so it will be interesting to see how I feel when I’m there. I’ve had plenty of severe panic attacks during walks over the years, but more recently have been better at recognising my anxiety as it starts to rise, and allowing it to be as it, without escalating it, or trying to escape. Time will tell.

6pm on day six

Today has been by far the hardest yet of my week-long agoraphobia challenge. It began pleasantly enough with a stroll in the country park with my sister. We watched the deer calmly chewing the cud, close to our path, and the autumn colours and blue sky were glorious.

After lunch my sister dropped me off at my mother’s care home. As I walked towards her room, I felt the familiar burst of anxiety. She was asleep, moving about restlessly in the bed, and opening her eyes from time to time. I found it impossible to stay in the room with her, repeatedly retreating to the corridor. My big fear was that she would wake up, and want to relate to me.

Eventually the manager stopped by, and after a few pleasantries, I asked if I could talk to her in private, so we went to another room. There, I told her about my emotionally-abusive childhood at my mother’s hands, and its chronic effects on my mental and physical health. She was a good listener, warmly sympathetic, accepting, and  kind. Afterwards, I settled sufficiently to sit with my mother again for a few minutes, then left to make my own way back to my sister’s house.

This meant waiting at the bus stop, catching a bus, and walking half a mile. I’ve only taken this particular route once before in my whole life, so you might expect it to be pretty demanding from an agoraphobic point of view. However, I made the whole journey feeling totally empty and blank, as if I were in a state of shock. It was such a relief to have spoken the truth out loud to the manager, and to know that she believed and understood me.

Looking ahead, though, tomorrow is due to be even more demanding than today, as it involves using trains for the first time for more years than I can count. However, just at the moment, I’m so physically and mentally drained that I have very little sense of anticipatory anxiety at all. Of course, my fears may well increase later, as the effects of such a stirring afternoon wear off a little.

7.30am on day seven

This is just a short blog before I set off early for the most challenging part of my trip: taking a train from Loughborough to Nottingham, then another from Nottingham to Warrington, a journey of several hours. I haven’t used a train for many years, and have multiple fears about travelling alone – getting lost, changing trains, getting stranded, tunnels, panicking, train toilets, no food, and so on. Today it’s time to stop avoiding all these fears, by confronting them head-on.

Along the way, I will use as many of my coping techniques as are necessary. These include relaxation, contemplation, prayer, holding my wooden cross, music on headphones, distraction, reading, and writing down how I feel. In preparation for the whole experience, I’ll spend some time in silence before it all begins, because contemplation really does make a difference to how I cope.

3.30pm on day seven

Well, I did it! I’m safely in my hotel room near Warrington, absolutely drained. At each stage of my journey, just when I was getting really anxious, there was always a kind person ready to help. Outside Loughborough station, a very nice taxi driver offered me a bottle of water, and we shared a chat and a hug. On the platform, the guard was happy to talk, which passed the uncomfortable time until my train arrived.

Changing at Nottingham was very stressful. My train was already at the platform, but I desperately needed the loo before boarding, as I knew I would be too afraid to lock myself into the train toilets. The facilities were on another platform, so I had to rush. It worked out in the end, but it was very unpleasant.

I had been worrying about the very long tunnels I knew we would pass through in Derbyshire, but managed surprisingly well. The lit train, the people chatting around me, and the large compartment made it all feel considerably less claustrophobic than I had expected.

By the time I got to Warrington I was spent, rather like yesterday afternoon – no thoughts or fears, just a blank mind, accompanied by a familiar physical sensation, as if the ground were heaving up and down beneath my feet. I was so tired that whilst looking for the taxi rank, I wandered away from the station in the wrong direction. To my surprise, the first person I approached for directions didn’t even register my greeting. However, the next person I met was able to point me towards the right place.

It’s a huge relief to be in my own quiet, dark room now, resting in bed and having lots of hot drinks, prior to my planned hospital treatment in the evening. Meanwhile, here is a prayer I wrote during this morning’s contemplation:

Lord,

When I reach the station,
May I go in with you.

While I wait for my train,
May your arms encircle me.

As I board it,
May I hold your hand.

When the doors close,
May I know your presence.

As my journey starts,
May we pray together.

When I change trains,
May I share your calm.

During long tunnels,
May I feel your comfort.

When I arrive,
May I thank you deeply.

Then, as I go on my way,
May I know your perfect peace.

6am on day eight

I completed yesterday’s marathon challenge by managing my evening hospital treatment, despite being very drained. Now I’m awake, and preparing to get up before too long. At 9.15 a taxi-driver will take me back to Liverpool Airport, for the flight home. The week has seemed to last an age and has tested me thoroughly, but I’ve survived, and learned a lot.

4pm on day 8

Here I am, very relieved to be home at last. I’ll end my agoraphobia challenge by reflecting briefly on what I have learned:

1. Most people are very kind. Many strangers are ready to exchange a smile, make contact, chat, or point the way, something for which I am profoundly grateful.

2. The effort of repeatedly facing individual fears during a long period away from home is very draining. I was amazed by how my mind would simply shut down after significant experiences, though it was oddly comforting to reach a point where I didn’t have enough energy even to be afraid.

3. There is no substitute for honesty. Being open about my fears makes it much easier to cope with them.

4. Lastly, I realised more deeply than ever, the healing power of listening. The manager of my mother’s care home listened without interrupting. She understood what’s said, and believed me when I talked about my childhood. She didn’t try to interpret it, or to talk about her own experiences or opinions. Our whole conversation only lasted about ten minutes, yet the effect was cathartic, shocking and profound. I want to offer this kind of listening to others.

All in all, it’s been a hard, tiring, productive and helpful week. Thank you to all who read this diary, and to those who sent “likes” and comments. Special thanks to the wonderful friend who looked up the trains and followed my journey in real time, so that if I got stuck or distressed, I could ring her for advice, and she would know where I was. Thanks also to the two branches of my family who housed and fed me so well, and to my husband, who had a very dull week at home alone with a sprained ankle.

I’d like to finish with a prayer:

Lord, thank you for my lifelong agoraphobia. For all the years of tense anticipation, the yearning for avoidance, and the overwhelming need to escape. For the physical and mental shock of panic, and the aftermath of helplessness and shame. For the endless concealment and excuses, from which I have so much to learn. For the task of facing fear and dread repeatedly, the triumph of success, and the sadness of failure. Most of all, Lord, thank you for the long, slow process of emotional healing, as you help me to face and manage all my fears. Through Jesus’ name, amen.

References

Give thanks in all circumstances (1 Thessalonians 5:18; NIV).

Here on Earth you will have many trials and sorrows (John 16:33, NLT).

In all things God works for the good of those who love him (Romans 9:28; NIV).