Yes it’s true! You are the masters of your own destiny. You are the epitome of the expert patient the NHS talks of. You monitor your condition and when required you inform all the appropriate services of the help you need when you need it (that is assuming you have services in your area) e.g. an appointment with your Neurologist, MS Nurse etc. Yes the responsibility is all in your lap. It’s all down to you!
This week I have been reminded of my own failings in my responsibility to have all the answers and knowledge on the specific help I need. I do hope you are noting my sarcasm by the way.
On a visit to an Orthopedic Surgeon during the week on a non MS related matter (problem ankle) when asked what Physio I was currently having (I explained about my MS and my right side weakness) he seemed shocked when I confessed I had never had any Physio. ‘Well firstly we need to get you some Physio as you have very little strength in your tendons on this ankle’ was his reply.
My Neurologist, MS Nurse or GP had not recommended Physio and I had failed to inform them that I thought I should have this treatment.
Later in the same week I was informed by my MS Nurse that I have been using the wrong needle in the wrong area of my leg for my Avonex injections. She talked of orange needles instead of blue. Orange needles! This is the first mention of orange needles! I’m using the blue needle that comes inside the dam packet with the injection. I don’t have nursing qualifications and know nothing of needle sizes. Orange, blue, these are just colours of the rainbow to me.
I’m clearly not the expert yet. Only a B+ for me. Must try harder!
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