Thursday, 26 September 2013

ME/CFS - to medicate or not

Uuughh!  Not good.  Two days ago that bug I was harbouring decided to show itself, ( rather than disappear quietly from whence it came).  Of course I should be pleased that my immune system has allowed this to happen, this is a positive thing - I keep trying to remind myself of this, but I feel rubbish.  I have a chesty cough and have been wheezing for two days.  My sleep has been very disturbed which doesn't help.
 On Monday I saw the doctor and she gave me some antibiotics.  We had a discussion about the fact that the antibiotics may affect my general ME symptoms and so it is now a balancing act - do I feel bad enough to risk aggravating my ME symptoms, or do I battle on and just hope my own defences sort it out in good time.  At 2am this morning I was thinking that I would take them when I get up, but now in the light of day I'm thinking I'll battle it out.  She also said I could use my daughters asthma inhaler if I felt I needed to, but this will further raise my heart rate - it was up to 140bpm at one point whilst at the doctors, so the same balancing act applies really.
Fortunately my littlest went on a sleepover last night which means I have a quiet morning ahead.  I intend to stay in bed, drink lots of hot fluids - yesterday's favourite was ginger tea with lemon and honey- watch tv on the iPad and do some meditating.
I had a Perrin appointment on Tuesday, the day my cough appeared.  I feel a bit sorry for my therapist as leading up to the summer every time I went to an appointment things were improving and I was feeling better.  Since the summer, the last 3 appointments, I haven't really had much good news.  Anyway, no major reaction to the treatment, my body seems to be dealing with the treatments very well now.
I was feeling pretty low physically and emotionally on Tuesday, but the good thing about that was that it has redoubled my determination to do whatever I can to make things better.  It's been over 4 years now and I feel a desperate need to conquer this situation.  I had been playing with the ideas in Dr Terry Wahls "minding my mitochondria" book, but on Tuesday I started the regime proper.  This involves seriously increasing the amounts of fruit and vegetables that I'm eating.  She recommends six cups of cruciferous/ green vegetables a day!  Plus one cup each of onion/mushroom, yellow/orange, red and also blue/ black fruit and vegetables.  I have to try and be as gluten  and dairy free as possible, 4oz animal protein and plant protein from nuts, seeds and beans.
There are other non diet recommendations, including brain training, yoga, meditation and spending 15 minutes a day on developing a new skill.  For me this will be my bassoon playing, but I can't do that at the moment because of my chest.  These are all designed to stimulate different parts of the brain  and help increase nerve growth factors, these are associated with increasing growth of axons, dendrites and myelin within the brain and spinal cord.  A higher amount of nerve growth factors are associated with greater levels of repair activities in the brain.
There is another element to Dr Wahls' approach which I haven't yet introduced and this is a form of electrical therapy- neuromuscular electrical stimulation (NMES).  It can be used to improve muscle strength in people who cannot exercise for whatever reason, such as ME.  I am going to talk to the physio at the therapy centre about this next time I'm there.  Had to miss my yoga session at hue centre this week, didn't want to spread my germs.
So you can see that all of this is pretty much a full time job, but I feel refocused and will push on...any good cabbage recipies anyone?

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