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Living with neurological problems (Anonymous)
I am trained nurse and social worker. So it would be logical to assume that when I suffered a head injury at work all this mass of experience would be extremely helpful, but I was wrong. The accident left me with difficulty walking, headaches and pain in my neck and spine. At this time my diagnosis was whiplash syndrome, which I was told should have healed months ago. In desperation, I tried acupuncture, homeopathy, shiatsu, aromatherapy, reflexology and spiritual healing. They did help a bit, especially with the muscle spasms.
As a result of my condition, I lost my job, my marriage fell apart and I was having difficult coping with my strapping teenage son due to the fact that I was literally flat on my back, wearing a rigid collar and spending most of my time staring at the ceiling. The pain in my cervical and thoracic spine was increasing, my leg functioning decreasing, and my distressing tendency to veer to the left, walking in to walls and doors, had begun to include an alarming ability to trip over most unexpectedly.
My new GP referred me to another neurologist, who without even examining me or listening to my symptoms, said my problems were due to depression and said I should be given anti-depressants.
Of course I was depressed, but the chronic pain (the chicken) and the lack of knowledge about what was happening to my body and spine, came before the psychological effect of it all (the egg). I felt useless, a failure as a wife, mother and human being. I wept buckets.
Eventually, I was referred told I had nerve pain (radiculopathy) as a result of damage to some of the nerves in my spine. I was referred to a pain clinic but I refused to have pain-killing injections in my neck and was offered psychological therapy instead to help me cope with the pain.
In April, 2004, I started to experience speech problems (dysathrophonia) which appeared prior to a kind of migraine – which I never suffered from before.
I was referred to yet another neurologist but he didn’t know what the problem was. I ended up paying to see a neurologist privately who said that I have ‘pseudo bulbar palsy’. It was not really a diagnosis as such but I guess it was something.
Doctors are trained to heal. We place an enormous burden on them, expecting them to diagnose and cure us. It is very difficult, especially with neurological symptoms, to give a diagnosis. I just want to be seen as a individual, not just another number on the list. My inability to be understood when my speech is slurred when I know what I am saying is frustrating and maddening. I feel isolated, low and weepy and sometimes, despairing. I also get very frightened on my frequent ‘bad days’. To be able to cope with not knowing what is wrong means becoming one’s own advocate, or trusting someone to do this for you. It means challenging people who are trying to label you. It means believing in what one’s body is saying, and not being hard on oneself when everything gets too difficult.
