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?

Saturday, 21 September 2013

Pancreatic enzymes

The fact that I haven't posted for a couple of weeks is indicative of the state of my brain at present.  I wouldn't call it brain fog as such, but more that it just can't really settle at anything at the moment.  I can't seem to start anything, finish anything or do much of whatever goes in the middle.  Yesterday morning I couldn't remember my own mothers phone number! I'm also getting my mords wuddled.  Alongside this my sleep has also deteriorated.  I am now apparently only allowed 7 hours sleep EXACTLY.  I had been having 8 hours...nice.   Why is it that I can go almost all day without a pee, but my precious 7 hours is punctuated by 2 trips to the bathroom aaaagh!
My previous post on 6th September was to comment on how well I was feeling, but for the last two weeks it has felt like I am harbouring some sort of bug, not one that will show itself properly, but one that is hiding itself in my throat and nose.  My body is trying to deal with it and that depletes normal resources.  It would be good if it either burst out and showed itself or quietly disappeared from whence it came.

I had a gastro appointment at the hospital on Monday, but when I got there I didn't see my usual doctor, but one of his colleagues.  I was a little disappointed at first, I like the idea that one person can build up a picture of what's going on, but as it turned out,  I don't think it was a bad thing.  As he didn't know my history, he wanted to review everything so he has asked for another set of blood tests and has also requested a faecal elastase test which will test the efficiency of my pancreas.  He has had to get authorisation from immunology to ask for this test, so I am still waiting to hear whether we can go ahead with it, but in preparation I have had to stop taking my pancreatic enzymes - they have to be out of my system for at least two weeks before testing.  So far it has been 4 days without them and at the moment things seem to be okay.

There are some very physical things going on in the house this weekend, it's the annual hedge cutting event, where the children and I follow Ant around the hedge sweeping, bending, lifting and wheel barrowing.  We are also taking delivery of our winter logs today, this is also a team event, the logs are delivered to the front of the house and have to be lifted into the barrow, pushed around to the back, emptied and then stacked.  Both of these activities are good measuring sticks for me as we do them each year and i have memories of how I have coped in previous years.  I think I will bake a cake this morning as it will keep the workers happy later.

8700 steps yesterday.

Friday, 6 September 2013

Feeling good

Just a quick blog note to document how well I'm feeling.
I had two appointments last week.  The first was with my Perrin therapist,  I told her about how the past month hadn't been so good and we talked about what might have been happening.  I had lots of tightenings in my diaphragm during the treatment.
The following day I drove to see my cranial osteopath whom I hadn't seen for three months.  I had left it too long and should have visited a couple of weeks earlier really.  He could see that there had been a deterioration, but was reassuring and told me that I wasn't anywhere near as bad as I had been and that things adjusted quickly once treated.  I wont go for a late afternoon appointment again, I thought it would be good because it wouldn't wipe out the whole of my day, but the hour long drive home was hard and I found it hard to get to sleep that night.
I can't really remember Thursday, but Friday wasn't good, I was snappy with the children and short tempered, it's always a sign that I am not good and I was feeling that I might have undone all the good from Wednesdays appointment.  on Sunday however I had a busy day and even helped with decorating and didn't struggle.  I thought nothing of it, but then this morning I woke up and it was as if someone had flicked a switch, I got up with no problem, didn't think twice about taking a shower (a shower often disappears if I'm having a bad day as it uses so much energy). And got straight on with my day.  I've been on the go all day, clocking up 8700 steps, way over my 5000 pacing baseline.
Energy has continued pretty well this week.  It's been the best week I've had for a couple of months really.  So, maybe I have come out of another dip.  I am thinking that I might go back to the hydrotherapy pool again this weekend, it will be the first time I've done that since before we went on holiday.
The main downside at the moment is my sleep.  I am waking sometime between 4am and 5am.  It's just too early. It doesn't seem to make any difference what time I go to bed.  It is quite an exciting time in our house at the moment as our eldest daughter enters a new phase in her life.  I feel this excitement and I feel it's pull on my nervous system and energy.  I need to meditate more to calm things down, but it could be all this that is affecting my waking.