The next morning, I met Professor Findley and his wider specialist team for the first time. I was instantly struck by his presence. He seemed to be one of those larger than life characters, radiating strength, charisma, intelligence together with immense compassion for his patients, and, as I would come to realise later, a fierce determination to solve the complex puzzle of Severe ME. At our first meeting, he seemed to study me for several minutes, head tilted to one side, before speaking, as if it were the first time he had come across someone like me:
“We don’t get many patients here whose bodies beat light sensitivity without medical intervention. But my team here tell me that your body started to self-correct by itself…now that’s a really good sign, Catherine.” This filled me with great hope and a fierce determination, much like Professor Findely’s, to learn all I could to solve my own complex ME puzzle.
Prof (as he liked to be known) also immediately increased my Tricyclic Imipramine medication from 1ml to 25mls, or 5mg to 125mg in standard form. This was a massive jump and it scared me. I had experienced bad drug reactions before. So Prof came back on the ward to explain it to me - an amazing example of his commitment to his patients, a busy, revered world class Neurologist, making time to assay his patient’s fears personally to put her at ease with his treatment plan.
“OK, Catherine. Let me explain why I want to increase your medication. Tricyclic Antidepressants work on the Neurotransmitters in the brain. And they work really well on Severe ME patients....as your Neurotransmitters just aren’t working properly.
It’s a bit like Doctors prescribing Aspirin to someone who has had a stroke to reduce the risk of further blood clotting….we don’t give it to them because we think they only have a headache, we give it to them because the Aspirin works in another way, a way that can help them avoid another stroke. Likewise, we don’t give Tricyclics to ME patients because we think you are merely depressed…although to be honest you have every right to be…no, we give it to you to get your Neurotransmitters working properly again. You are in the recovery phase now, you will not react badly to this, I promise you.”
Why, of why, had no-one explained this to me like this before? I could have been on a high dose months ago, after the light sensitivity phase had passed. And therein lies the problem for Severe ME Patients the world over: there are only a handful of medical professionals who actually understand the distinct phases of Severe ME and how to treat us; and only a lucky few amongst the millions of patients worldwide who are lucky enough to ever meet them.
The next 6 weeks were tough but I survived. Prof and his team were passionately committed to their patients. Comprising a fully integrated, multi-discipline team of Neuro-Physiotherapists, Occupational Therapists, Counsellors, Dieticians, Nurses, Pain Management specialists, supporting Auxiliary Nurses, Junior Doctors, these amazing people would finally give me the help, support, guidance and care I so desperately needed to take me forward. Prof and his team would focus on careful management of all the perpetuating factors of the disabling fatigue state (sleep disturbance, pain, sensory overload, brain fog, anxiety, allergy, diet, food intolerances, etc) as part of a holistic programme, including carefully structured and monitored activities of daily living in a graduated fashion; this team would simultaneously treat and help me manage the wide range of physical, cognitive and emotional symptoms, helping me to progress on all fronts, and build on the teeny tiny recovery steps my own body had taken a few months back.
And I was off to a good start. I put my faith in Prof and took the increased dose of Imiprimine on my second night on B1. I was used to getting at best 4 hours broken and unrefreshing sleep per night but imagine my surprise when I awoke on Saturday morning and realised I had slept 9 hours straight through; within 48 hours of arriving here, my sleep disorder had been treated by a Severe ME Expert, providing me with a firm foundation for recovery and tiny drops of additional energy which could be put to good use.
During my first week I underwent a whole battery of tests and investigations which Prof wanted carried out to ensure no stone was left unturned: blood tests to identify any haematological, biochemical and immunological problems; then EEG, ECG, Visual and Auditory potentials amongst others. I found these tests extremely draining but I understood that they were necessary. Once I had recovered from these tests, it was then time to start working with my Occupational Therapist (OT), Michael. He was a gentle young man, but fired up to help me get my life back; he was also compassionate and understanding so when I said I just could not deal with more than a 30 minute session daily with him during the first week, he did not bat an eyelid....here was a medical professional who understood Severe ME. I knew how very lucky I was to be here.
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