Sue's Story - 32 years of life with Agoraphobia (part 1)
Sue from Colchester has suffered from agoraphobia in varying degrees for 32 years and she's been completely housebound for the last 6 years. The idea of having to go outside scares her so much that she's been forced to give up many things in life, including taking care of other aspects of her health (when not provided at home), or sharing a moment away with her family. Instead, she stays at home and occupies her time with creative tasks such as needlework or painting as these absorb her thoughs, even for a moment.
When she's able to make it to the garden, she enjoys photography as it allows her to look to the world through different eyes. Additionally she enjoys reading books by Dr Claire Weekes that she considers as her 'bibles', as well as practicing yoga, meditation and doing charity work.
When you talk to her you realise how strong and joyful she is, even though she has suffered from depression and she carries many other 'physical troubles' as she calls them: IBS, positional vertigo, migraines, brain fog, sinus probs, frozen shoulder, ear probs, stiff joints, intense itchiness - most of which she thinks are down to stress and hormones.
She's an example to anyone to keep going and fight for a better life. I asked her to share her personal story because many of us cannot imagine what's like to suffer from this disorder and those who do, will probably feel good knowing there are so many people out there going through the same sort of problems as they are. You are not alone. Just in the UK there are another 3.5 millions people in the same situation.
Here is Sue's story in her own words.
Some of Sue's creative works: photographs, crafts, gardening
HOW IT ALL STARTED
I can still remember my very first panic attack. I was 14 years old. I had always been an outgoing child. I was made School Hostess in the last year at Primary School due to my outward nature, I was always the lead singer in our Dance club shows and my mum reminds me that on my first day at school aged 5 such was my independence that I did not want her to take me school or register me. However, beneath this outwardly extrovert personality I suffered terribly from a fear of heights (even a foot of the ground) and can still remember cowering every time a ball was thrown near me in games. I was eager to please and wanted to be liked and would worry if I felt I wasn’t – not as self-assured as I made out.
I guess it all started when I was 8 years old and my father died suddenly from a heart attack. My mum said I was very stoic and said little about it but I used to cry alone or at school. I did not want to show her my feelings as she was very reactionary and I could not bear being fussed over.
Then at 13 years old I was travelling home from school and our coach crashed into the school coach in front of us, which had in turn crashed into a lorry. Two people were killed and I can still remember seeing the dead man lying on the road being covered with a blanket and thinking he looked like my dad. When we eventually got home 3 hours later my mum was, understandably, in pieces and could not believe how calm I was. Again, I held in my feelings and said I was fine, not wanting any fuss. Several months later, on the very same hill, our school coach crashed again. It was after this the anxiety began to show. I began to feel anxious every time I had to travel, overwhelmed by the belief that we would crash.
After the accidents I went with our Youth Centre to the Pyrenees and it was a nightmare. Two days travelling there on a mini bus mostly hid under a blanket fearing every vehicle would crash into us. I was a wreck by the time I arrived and then had to endure the journey home. I continued going to school but always felt anxious and off-balance and dizzy was always holding someone’s arm for support. My world started to get smaller as I avoided going places. When I did it was never without anxiety and even at home I was generally anxious.
THE FIRST PANIC ATTACKS
My first full-blown panic attack came as I walking down the hallway from our bathroom to my bedroom. It was early evening and my legs went like lead, I felt I could not breath, my heart was pounding, my hands and feet cold and wet with sweat. I ran into my brother’s room as felt I could not make it to mine and I had to escape this feeling quickly. I lay on his bed and remember thinking that the world was spinning in space and I wanted to stop it. Like being on a fairground ride. My fear grew and I attached it to this thought (a thought has remained my panic trigger to this day).
I looked at my hands and for the first time had a heightened self-awareness of my existence – I am alive and there is nothing I can about it! Why are we here? What is death? How can I escape death? What if death is an eternity and I have this feeling for ever? All these thoughts racing through my head and the panic reaching such a point that I thought I was going mad. Eventually, the adrenalin subsided and I returned to my room where I had an agitated sleep.
After that my world got even smaller. I was in such fear of the next panic attack and as my anxiety was worse when I went out I avoided it even more. I kept battling it but it was becoming harder to control.
I went to my doctor who put me on Beta Blockers and then bought in Anafranil, an anti-depressant to run alongside them. I was sent to a Counselling at a local Mental Hospital, which was horrific. I was in a group of people much older than myself with varying degrees of breakdown and one killed themselves and no longer attended. All very distressing at any age but totally bewildering to me in my teens.
Please check back to get the next installment of Sue's extraordinary story. In Part 2 Sue recounts her life as a young adult, how she met her husband and how she managed her pregnancy and the birth of her baby being unable to leave the house.