Sunday, 29 December 2013

Lymphatics and trampolines

I have made it through Christmas without any major relapse - Hooray.  Hope you all managed to too.
We all know that usual pacing strategies tend to go out of the window for major events like this, so it can be a bit hit and miss.  Infact although there is a lot of stress and activity leading up to the Christmas period, my step count actually during the two or three main festive days was way lower than usual.  Lots of sitting around with the family playing games or chatting around the table, and MUCH more tv viewing than normal.  So, much more static than a normal day around the house.  These quiet days made it easier for me on the 27th when the females of the family have our traditional shopping trip to the sales.  My step count that day topped 10,000 which is a huge day for me and requires days of doing nothing either side.  I'm coming up to 48 hours post this exercise, so could still have some sort of reaction, but I have been sensible and so far feel okay.
Being sensible has meant early bed times and although it sometimes annoys me during the year, I know it's a good strategy and just do it, but at Christmas I find it more annoying.  I want Christmas days to stretch out for as long as possible, to last as long as they can.   It already passes too quickly, if you throw in a 9pm bed time the days feel prematurely clipped and pass all too speedily.

Father Christmas was kind enough to deliver a trampoline for Ben.  He was delighted.  I have an intention to try and use the trampoline too (gently obviously).  My physio has suggested using a trampoline before, but now I have easy access to the equipment I am going to incorporate it into my routine.  It is possible apparently to stimulate the lymphatic system even by bouncing without your feet leaving the trampoline - so very gently, and this is what I will start with.  I'm also hoping it will help stop the disappearance of my thigh muscles, which have diminished in a big way in the past few years.  This link explains why bouncing helps the lymphatic drainage process.  The Perrin technique and my improvement through it have already proved to me the importance of helping lymphatic drainage in ME.  I fully expect to feel bad after using the trampoline and would see this as a good sign that it's doing it's job initially.

I have decided that 2014 is going to be the year of organisation for me.  I expend too much of my valuable energy by not being organised enough and I would like that to change.
A good example of this is food.  On a week when I am organised I have all the meals planned out in advance, I do my on line shop, and each day I know what I'm cooking and what needs doing, it works soooo well!  Why don't I do that all the time????  I don't know why, its definitely easier, it just takes a bit of planning, planning that I need to prioritise.
I'm also going to go shopping this week and buy ALL my birthday cards for the year.  I will have them all ready, rather than running around like a headless chicken at the last minute and expending more energy through unnecessary activity and stress.  Anyone got any other good ideas I can take on board?

Saturday, 21 December 2013

GP visit

On Thursday morning I went to see my GP who I haven't seen for a while.  I told him that I was feeling things had been sliding backwards since the summer and asked if he would refer me to see Dr Annice Mukherjee an endocrinologist at the Salford Royal hospital who I had heard had a special interest in women with ME and their hormones.  My GP was very kind and told me of his concerns about sending me off on a wild goose chase and how it is easy to constantly be chasing "specialists", but I explained that feeling that I am proactively doing something towards my recovery is the only way that I can deal with this situation mentally.  What is the alternative???  To do nothing???  He seemed to appreciate this standpoint.
He did make a referral for me for which I am grateful.
On Thursday afternoon, I went to see a homoeopath to have some food intolerance allergy testing done.  She concluded that I had strong reactions to Tea and coffee and mild reactions to wheat flour, gluten and watercress!  I haven't had a cup of tea or coffee for four years now, so eliminating them will not be and has not been a problem.
The build up to Christmas has been pretty full on, but finally today, I feel pretty on top of it.  After a rush of children's activities and Christmas socials we now have a quiet weekend and I am ready for it.  I need to conserve my energy for a family festive trip out on Monday.

Thursday, 12 December 2013

Ignore me, i'll get over it.

It's been almost a month since my previous post.  That's not because there hasn't been anything happening, but more because I'm just not quite sure what to say.  Things are still very up and down and probably more down than up at the moment.  I just don't know what to think.
I've had various appointments in that month and felt varyingly better for a short while afterwards, but generally things are a little upside down.
I've spoken to my gastro doctor about the things on my blood tests that DR Myhill thinks were significant and he just wants me to have them repeated before I see him next to see if the particular readings are still high.
I've had an almost constant cold sore either on my mouth or in my nose and my fair share of mouth ulcers.  It just adds to that general run down feeling.
I've also been told this month that I have posterior blephoritis, the meibomiam glands on my eyelids aren't working properly.  I guess having sore eyes hasn't helped my general feeling of wellbeing.  I have started treating it and it is improving.  
I've cancelled the blood test I was due to have to reanalyse my mitochondrial status, I don't really want to know.  The original idea was to give myself a boost by seeing how much I had improved since first being tested three years ago - it's going to have to wait.
I've also been having lots of hot flushes and have only had two proper periods this year (and two very feeble attempts!), which makes me think there is definitely something hormonal going on.  I am peri-menopausal and I think this is effecting my ME symptoms.  With this in mind I have an appointment with my GP next week to ask if he will refer me to see Dr Annice Mukherjee a consultant endocrinologist in Salford Hospital who has a special interest in ME and hormones. She was the guest speaker at the Perrin conference recently.  It's a long way to travel, but I just want to see someone who I feel  knows more about my condition than I do! 

The above probably sounds pretty down beat and moany, but I need to document how I am right now as it's easy to forget.   It's all just a huge inconvenience that's getting to me a bit at the moment, but hopefully in 3 months time I'll be able to read back and see how much things have improved and take some pleasure from that - I feel unsure about typing that even as I put it, I'm not sure I believe it, which just goes to further illustrate my current state of mind.

Ahead of me  - a rush of activity for the Christmas period, most days with something to do or somewhere to go.  It's going to take careful management.