Why Do People Make it So Difficult? - Sue's story (part 3)


WHAT'S LIKE TO HAVE HEALTH ISSUES AS AN AGORAPHOBIC

When my doctor of 25 years retired when I was 40 I felt out on a limb.  I had a mutually respectful relationship with her and I had lost someone who had seen me through so much and knew me inside and out. I was at a loss. Sadly, I have not regained this relationship yet with another doctor. 

When my son was young, every time  I tried to exercise I got sick and after tests I was told it was M.E.  I ended up having to use a wheelchair if I went anywhere that needed me to walk far as I was so weak. To this day I never have a day where I feel "well", most days I have a headache of varying severity and neck and shoulder pain and often have positional vertigo. If I overdo it I end with flu-like symptoms and extreme fatigue. This does impede my progress with building my mental health as just as I start building momentum with "getting out"  I am then laid up with headaches and various ailments.

About 4 years ago I discovered a lump in my breast. The doctor who checked it said it needed to be scanned.  I had an open appointment every Tuesday at the hospital but try as I might (under a blanket in the back of a car, listening to meditation tapes, different friends by my side) I could not get through the intense lashings of panic to get there. I contacted our local MP, Bernard Jenkins, to enquire whether a mobile scanner could come to my village or there was an alternative form of portable scanning. He was excellent, he actually came to my home to visit me to discuss my situation and contacted the head of the local hospital to see what they could do. Sadly, neither option was considered viable so to this day it remains unscanned.  As my mother, and her mother’s sisters, had all had breast cancer in their younger years I am very conscious of the importance of having any anomalies checked.  I actually spoke on Jeremy Vine’s show on Radio 2 about this. It is terrible that there are not the provisions for agoraphobics / housebound people in so many vital areas. My dear friend Janice Walker wrote an article on this very problem which was published in “Anxiety Times” and is available to read on Virtually Free’s site. 

I need my eyes checked and rang about this. Apparently you can have home eye checks if you are over 65 but not agoraphobic and 46! My mother at 72 is quite capable of going anywhere!

Sue has an amazing house where she spends all of her time

Sue has an amazing house where she spends all of her time

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Last year I had a cyst under my arm that was badly infected. I rang my doctors and after having to go through my usual plea for a home visit, a doctor, who was there on placement for a year, come out.  He was really thorough and kind with me and offered to drain it at my home as he felt this needed to be done. Unfortunately, he was prevented from doing this as it was against Practice procedure and so it got worse. I had to take antibiotics which is by no means a simple task for me due to my fear of taking any new meds. It took me several days of anxiety, talking it through with my therapist, spitting many tablets out, before l finally swallowed one at 4.00 in the morning after sitting up all night. A massive panic attack followed before I finally fell asleep. When the doctor checked it again he said ideally I needed to be referred to hospital to have it drained. I asked if I could be heavily sedated so they could do this, but sadly all that could be offered was Valium. I could not go without being knocked out and was so scared as I waited it out. As luck would have it, and to the doctors surprise, it got better. When he first offered to drain it at home I would happily have signed a disclaimer, whatever was needed, and I just wish there was better provision for agoraphobics. I understand this is not the Practice’s fault but surely policies should be improved to facilitate health care for the housebound. It is so wrong. Everything is a battle. 

Policy and procedure do not just affect my health care they also have a detrimental effect on my efforts to improve my chances of working from home. I looked into becoming a Reflexologist, as it is of interest to me and something I could do from home – again I hit brick walls – I could learn from home but in order to get the accredited qualification I would have to attend a venue.  Hitting brick walls has always been part of my condition but however many brick walls you hit, they don’t get any softer.

The very core of agoraphobia is being terrified of going out.  Okay, most people can get to a hospital. Even the physically impaired can be taken in an ambulance or wheelchair. When I was cut in half and stapled together during my hysterectomy I could barely stand and yet made it to the hospital to have my staples removed. But agoraphobia is different in that no stretcher or wheelchair can assist you. You know you are literally out of reach of most emergency medical care. I get that; I know there is no obvious solution, however, when there are means of scanning a breast or draining a cyst at home why do I and others have to go without care?   In order for change you need the will to make this happen and not just “no we don’t, no we can’t, no we won’t” mentalities.  Life has many grey areas that need adaptation applied.  Standing down off soap-box (fortunately I didn't trip and break my ankle! )

Sue xx

Come back for part 4 and see how Sue has learned to cope with her condition as best she can, what achievements she's made recently and her hopes for the future.

You can read here part 1 | part 2 | part 4

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