Testing, testing.... second half of June 2005 in hospital
I spent the next 2 weeks in hospital. The rheumatology ward was full of people without rheumatology problems.
I was told that I wasn't going to have a CAT scan because I didn't have a burst blood vessel in my brain after all, and then a porter turned up to take me for one. I wasn't told what that showed until the folowing day: something, but no burst blood vessel. The something was never really explained to me.
I would have been allowed home for the day the first Saturday I was in, but noone had told me. I was clearly upset that day, and someone told me I could visit home, so I pushed to arrange it for the Sunday. I was by now unable to do the stairs at home without my partner holding me up, and I couldn't even step over the lip of the back door. But at last I had somewhere I was allowed to be upset.
Back at Stepping Hill Hospital, I kept having more neuro exams with every new registrar covering each new day, and then with somebody more senior too. Also with lots of medical students and registrars swotting for their exams. I was alarmed at how, each time, I could do fewer and fewer of the tests, such as waslking heel-to-toe, or moving my hands etc. Eventually I couldn't even put one foot at the front of the other. Sometimes, if I wanted to move my right arm, I had to use my left arm to move it. Or I'd be carrying something, and then my attention would switch, and I'd just drop it.
I was not in need of nursing care though, and I would far rather have been at home, not to mention the strain visiting me every evening was having on my partner. And I was SO bored. However, when I finally saw a neurologist I was advised to stay in so that I could have an MRI scan - apparently there was a 6-month wait if I were an out-patient.
In the second week I started a 3-day course of high-dose, oral corticosteroids called methyl prednisolone (I think). I had no side-effects and this was the first time my symptoms stopped getting worse. I saw the occupational therapist a couple of times. She helped me think about all aspects of my home life, and how I would deal with them from a practical viewpoint. She showed me examples and catalogues of self-help equipment available. I was registered to have a long-arm reach because I couldn't bend/squat down without falling over. Also, a kettle-tipper to take the weight of pouring the kettle. I was struggling with the bath so she referred me to the local Adult Rehabilitation team, to get social services to see if they could fit a hand-rail. She also got me an appointment with the in-hospital physio, who showed me how I might better tackle going up and downstairs. Interestingly, because of the shape of the hand-rail, I could do the hospital stairs whereas I couldn't do them at home.
I was allowed out again to visit home the second weekend. A real blessing.
I had the MRI scan. The same person who had badly explained the CAT scan told me that it showed nothing to indicate MS.
The neurologist 3 days later told me it showed damage as you would expect from a healthy 50-yr-old (I was 35), and recommended I have a lumbar puncture, again as an in-patient. I just never knew from one day to the next whether I was going to be allowed home that day.
I was told the lumbar puncture would be done on the Friday. On the Wednesday before, someone came to tell me about what it entailed: pain, headache, lying down for several hours (ie being bed-bound). Then they said it would be on Thursday. Then at 4pm on the Wednesday, two people came to do it there and then. This was done at my bed on the ward, and continued during visiting hour. My poor neighbour and her visitors had to leave and find somewhere else to go because it was botched.
One was training the other, and it was disconcerting to hear the errors made. Anyway, they both tried with me sitting up and lying down and couldn't get any fluid out. They made me cry out and scream in agony as they touched first one then other nerves. They tried using more local anaesthetic, but I was in such pain. Eventually they agreed to give up "for today", let me rest and they'd "come back tomorrow".
I was still crying and in agony when my partner came. I spoke to the charge-nurse and with my partner's help I discharged myself; there was no way I was letting that pair come near me again.
I was told that I wasn't going to have a CAT scan because I didn't have a burst blood vessel in my brain after all, and then a porter turned up to take me for one. I wasn't told what that showed until the folowing day: something, but no burst blood vessel. The something was never really explained to me.
I would have been allowed home for the day the first Saturday I was in, but noone had told me. I was clearly upset that day, and someone told me I could visit home, so I pushed to arrange it for the Sunday. I was by now unable to do the stairs at home without my partner holding me up, and I couldn't even step over the lip of the back door. But at last I had somewhere I was allowed to be upset.
Back at Stepping Hill Hospital, I kept having more neuro exams with every new registrar covering each new day, and then with somebody more senior too. Also with lots of medical students and registrars swotting for their exams. I was alarmed at how, each time, I could do fewer and fewer of the tests, such as waslking heel-to-toe, or moving my hands etc. Eventually I couldn't even put one foot at the front of the other. Sometimes, if I wanted to move my right arm, I had to use my left arm to move it. Or I'd be carrying something, and then my attention would switch, and I'd just drop it.
I was not in need of nursing care though, and I would far rather have been at home, not to mention the strain visiting me every evening was having on my partner. And I was SO bored. However, when I finally saw a neurologist I was advised to stay in so that I could have an MRI scan - apparently there was a 6-month wait if I were an out-patient.
In the second week I started a 3-day course of high-dose, oral corticosteroids called methyl prednisolone (I think). I had no side-effects and this was the first time my symptoms stopped getting worse. I saw the occupational therapist a couple of times. She helped me think about all aspects of my home life, and how I would deal with them from a practical viewpoint. She showed me examples and catalogues of self-help equipment available. I was registered to have a long-arm reach because I couldn't bend/squat down without falling over. Also, a kettle-tipper to take the weight of pouring the kettle. I was struggling with the bath so she referred me to the local Adult Rehabilitation team, to get social services to see if they could fit a hand-rail. She also got me an appointment with the in-hospital physio, who showed me how I might better tackle going up and downstairs. Interestingly, because of the shape of the hand-rail, I could do the hospital stairs whereas I couldn't do them at home.
I was allowed out again to visit home the second weekend. A real blessing.
I had the MRI scan. The same person who had badly explained the CAT scan told me that it showed nothing to indicate MS.
The neurologist 3 days later told me it showed damage as you would expect from a healthy 50-yr-old (I was 35), and recommended I have a lumbar puncture, again as an in-patient. I just never knew from one day to the next whether I was going to be allowed home that day.
I was told the lumbar puncture would be done on the Friday. On the Wednesday before, someone came to tell me about what it entailed: pain, headache, lying down for several hours (ie being bed-bound). Then they said it would be on Thursday. Then at 4pm on the Wednesday, two people came to do it there and then. This was done at my bed on the ward, and continued during visiting hour. My poor neighbour and her visitors had to leave and find somewhere else to go because it was botched.
One was training the other, and it was disconcerting to hear the errors made. Anyway, they both tried with me sitting up and lying down and couldn't get any fluid out. They made me cry out and scream in agony as they touched first one then other nerves. They tried using more local anaesthetic, but I was in such pain. Eventually they agreed to give up "for today", let me rest and they'd "come back tomorrow".
I was still crying and in agony when my partner came. I spoke to the charge-nurse and with my partner's help I discharged myself; there was no way I was letting that pair come near me again.
posted by Hazel | 11:19 AM
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