Does what it says on the tin! Notes to self. A diary, if you will, recounting and recalling my life thus far, with and without MND.
Wednesday, 15 August 2007
Wednesday, August 15, 2007
Current mood: anxious
First, an apology to everyone, who has been trying to contact me, since last week; I have been in Hospital, following an adverse reaction to Baclofen. I have been experiencing wakeful nights, punctuated by painful, cramped spasms. My neurologist prescribed Baclofen, beginning with a 5mg dose, morning and evening, to be increased gradually, by fortnightly increments, to 80mg per day. I had reached a daily 60mg dose, when I suffered, sudden and excruciating photosensitivity. I became short of breath and could not lift either leg or move from my side, in bed. It was horrendous. I was very scared. My daughter was in Wales, at the time, on holiday, with friends and relatives. I called and asked that she might stay for another day. I am very fortunate in that way. B is a joy to be with and is always a popular and welcome guest. I called my care manager. My neurologist is currently on holiday and in his absence, she suggested a home visit by my GP. The doctor panics at my name and always sends me to the big guns at the hospital and so it was. I arrived at Burnley General Hospital. Burnley is an odd place: home of the Clarets, boasting; John Kettley, Ian McKellen and Alistair Campbell, Zac Dingle and Chumbawumba as its champions.
Having heard the 4 part harmony, the doctor admitted me to the wards and stopped the Baclofen. I had been warned not to stop taking it suddenly but the doctor assured me that my reactions would be closely monitored. I could still bear no light, struggled for breath and could scarcely move my limbs. I arranged for a friend to have B for another few days and bring her to see me. They made a big card and joked about my bad-taste sunglasses. 2 days later, I could roll over, my breathing was back to normal and I could bear to open my eyes with the lights off.
During my time in bed, I had to call for assistance to use the commode. Three times, I was left stewing in my own menstrual juices to be met with tuts and frowns and referred to, in my own presence, as if I had achieved inanimate status. I hate the ignominy of bed baths more than I dreamt possible. One woman seemed to understand but most of the staff was too busy discussing a hectic social calendar, to afford me any semblance of dignity or humanity, during my ablutions.
Day and night, a woman, called Jeanie, called out, 'Nurse, Nurse, Help me Nurse, I'm sick,' to be told, by a nurse, 'there are no nurses here, they've run away and left you because you bothered them, so much.' I can appreciate that it was annoying, it was annoying for all of us. Jeanie was incessant. She slept for 3 hours and called out for the remainder of the 24. She called out, even when a nurse was in the room with her. No one challenged the infrequent outbursts, from nursing staff: they were in charge of my drugs! I have added to my vast store of things that I feel bad about.
At home, I take my Riluzole at 6am and 6 pm. It works for me. In hospital, drugs were administered at 8am and 10pmish. On the Sunday evening, I was incredibly tired. My cramps had flared up, again with a vengeance; looking and speaking and even breathing were such an effort and Jeanie didn't help. I asked the pharmacist if she could dispense my medication earlier, so that I could sleep before the painful, overhead, fluorescent lights were switched on. She agreed to try to get to me for 9pm. At 10.45 the assistant pharmacist shone a torch into my face and woke me. I was in agony. I couldn't move my head out of the way and the light was piercing at the back of my eyes. I shouted, loudly and inconsiderately and called her a troll. She maintained the light, told me that she had to look in a cabinet by the side of my bed, for my medication, asking, 'would you like me to give you the wrong tablets, so that you'd die and I'd get sacked?' There's really, no response!
On Monday morning, the doctor did his rounds. I was going home. I came in, with photosensitivity. My photosensitivity was pretty much, gone. I missed B, like mad. I could transfer from chair to standing with minimal assistance and could stand with something to lean on. The cramps were back but I was not taking the Baclofen, so what, did I expect. The doctor told me that he would recommend another option to my GP. I came home. I was very tired but B and I were glad to be reunited and spent a couple of hours of quality catch-up time. She told me the plot lines of every TV programme I had missed, including the ones that I don't watch, anyway, honest. Ooh Bobby Davro is due to join the Eastenders cast!
My skin had started itching, and B began to remonstrate, with me, that I was twitching and scratching. The urge increased and I became dehydrated and tetchy. We decided to go to bed. The itching was unbearable. I tried to resist pulling at my face and ripping my eyes and if I gave in briefly, the sensation was increased 100 fold. I found myself muttering incomprehensibly. My brain was racing in a seeming non-sequitur. The only way that I could control it was by reciting, slowly and silently. I repeated everything that I have ever learned by rote. Poems, opening lines of books and plays, famous soliloquies, lyrics, ditties, the first 3 chapters of Virgil's Aeneid II! I have to laugh. There I was, trying to maintain my sanity, by doing the best impression of a candidate for Bedlam that I have ever seen. Sweating and desperately clawing at the sheets, I reigned myself in, slowly, concentrating on the gnawing ache in my stomach. I tried to reach the toilet, crawling across cool tiles and the previously vilified, laminate, of my predecessors, on my stomach.
By morning, I had made it back to the sofa. With help, I got dressed and had an inadequate and cursory wash. B and I went to the Cinema, where no one could see me shake. I felt as if my head was going to explode. It was pretty much the same routine, last night. I was rude to a girl from work, who phoned to see, how I was coping. It has taken all my strength and will power to be bright and pleasant to B without anyone else. Today, it's still bad, but noticeably more bearable. B has gone to play with her friend, in the village, until tea-time. I have a throbbing head and a burning sensation in my chest. My mobility is still worse than before but better than yesterday. The itching and shaking is still quite bad but I'm not so angry.
I'm sorry to those who thought I was ignoring them. Give me a few days' grace. I look forward to getting back on top of things.