I stood, facing the wind, as it brought the southerly warmth all around me. As it surrounded me, I felt joy and gratitude that I could once again walk. Over the last several months, I had stopped my walk, as it was not possible anymore. My legs had been wrapped in the weight of MS. This has happened many times before, and my solution has been to get a treatment with IV steroids, to calm down the inflammation which caused my nerves to fail.
A few weeks ago I had an MRI scan, and it showed I have some fresh scarring on my spine, and some old scars have become bigger. These cause me to have various symptoms which can influence my walking, breathing, sensation and fatigue. The treatment has had a positive effect on my ability to walk. This is fantastic.
On Tuesday I hope to learn more about what is happening to me, and is there a new way to treat my MS. That will be an interesting appointment. The advancement of my MS is expected. It is a progressive disease, but it is also scary. I don’t know what will happen in the future and I need to plan. To have a strategy which will allow me to live in peace with this disease. The one thing I do not want to happen is for me to just let this wave of disability crash over me, capsizing any hope of a life. There is a way to navigate this. I just don’t know what it is, yet.
My hospital visit
My previous visit to the Acute Medical Unit (AMU) was horrific (you can read about it here), and I was concerned about my faith in the medical system. However, my fear was unjustified, largely, as the care I had in the treating hospital was fantastic, except for the doctor.
From the phone call, which let me know I was going to be getting steroids, to the time I left after three days, I felt cared for. This hospital has a positive culture. The catering and cleaning staff were all friendly, chatting to me as I lay in the bed. On one occasion when I got my late afternoon meal of eggs and rashers (bacon for my North American readers), she apologised as the whole hospital had chosen this meal, and not the salad. There wasn’t enough for everyone. So as a compensation, she gave me an extra sandwich, so I wouldn’t be hungry. It was a small gesture, but when you are feeling vulnerable and ill, these small things are significant. They help you feel human.
When the night nurse arrived on my first night, she asked if I wanted the main light on in my room, as I was shrouded in darkness. The natural instinct to switch on the light was tempered by concern for the patient. I don’t like artificial light; it makes my eyes sore and increases my pain. The fact I was asked meant so much to me. Again, I was a real person in her eyes, not another object which had to pass through the system of treatment.
Steroids have this nasty effect of not letting me sleep well, and I need to get sleeping pills to get me my needed shuteye. The nurse who took a very thorough history made sure the doctor was aware I needed them, and she also noted all my other symptoms. However, the doctor did not, as far as I could tell, read this history, and focused on what pills I needed, to the exclusion of everything else. It seemed I was just another tick on their rounds, not someone who was dealing with a disabling illness.
This surprised me, given the care I was getting from all the other staff. One thing I noted was the nursing staff all had name badges, but the doctor didn’t. I wonder if this is to keep a barrier between patient and healthcare professional? Why do the nurses want us to know who they are? A name helps to create a bond. I cannot remember if the doctor told me their name, or not, but when I am in hospital, I am concerned about my health. Focused on how I feel and having to remember a name is difficult. Besides this, fatigue and MS can cause cognitive issues. Remembering words, things, people can be a challenge, and I know I need help with this. A simple name badge helps.
What I am thinking about
My brain is working overtime, trying to deal with many health issues. Looking for a path which will support my mental health. One way I use my illness to strengthen my positive outlook, it to understand the obstacles I face, and find ways of fixing them. I cannot stand by and watch. I need to do something.
Seeing the contrast between my two hospital visits, I can see what works well, and this must be copied. However, the doctors are not shining examples of best practice. The opposite. Is this because of the way we have taught them, or the culture of the institution they are working in, or maybe it is just the way doctors are?
As part of my advocacy, I am a member of a review committee of the curriculum for doctors. My role in this review is to be the voice of the patient. My experience can improve the teaching of the next generation of doctors. It is a challenge, as I am just one voice, but I am grateful my voice is present.
What is your impression of your healthcare system? Let me know in the comments below.