Quick update

It's been just over three weeks since my last post, so I just wanted to do a quick update on what's happening.  It's been a busy three weeks with both Ant and two of the children having birthdays in the space of two weeks.  All that excitement and activity not long after Christmas does take it's toll somewhat.  I felt I had underplayed the Birthdays a little this year, normally I like to make such a fuss, this years celebrations were a little understated in comparison.  I was however,well organised and had all presents bought and wrapped well in advance so there was no last minute rushing around.
 In addition a close relative has just been diagnosed with a serious medical condition and we are waiting for test results and treatment information.  I'm supporting as best I can, but know at some point the emotional side of this will have an impact on my fatigue (it may already be happening).
So, I'm not feeling brilliant but there are lots of things going on that might have contributed to that.  It's not a major relapse or anything, just a general feeling of "under the weatherness", fatigue, heavy legs and the vagaries of a sore throat coming and going.  There is no excess energy once the necessary has been done.

On a more positive note, something exciting happened today.  I have been reading alot of research extracts recently and had decided that I was going to start my own podcast looking at some of the research taking place around the world and interviewing some ME experts.  Today I have had some correspondence from an American Doctor that I had approached to see if he would be interviewed and he has agreed!  I'm not going to say who it is at this point, but I am very excited to get this new project rolling.

Trampolining progress has been slow due to the foul rainy weather.  I'm only up to 1 minute 45 seconds due to the fact that I'm only increasing by 15 seconds every 4th session and I'm not getting out there on days when the trampoline is too wet.  Still, slowly but surely is a good way to go.  My bouncing is becoming a little more vigorous and I'm feeling much better when I bounce.  At first I used to get a horrible sludgy feeling in my head whilst I was bouncing and the gravity felt like such a heavy weight pushing down on my head.  It doesn't feel like that any more.  It does make me feel a little nauseous though.  Ant thinks my sore throats started when I started bouncing, he relates the two, I'm not so sure.

I've had my mitochondrial results back from Dr Myhill, I will do a separate blog post about them soon.

Mixed feelings

A quick update.  I've started on the tampoline.  Every 3 days I am increasing the bouncing time by 15 seconds, so, being super cautious to try and eradicate any adverse reaction.  I'm up to 1 minute 15.  As yet my feet aren't leaving the trampoline mat, but that is not important as bouncing on the mat still has the desired effect.  My aim is to get up to 10 or 15 minutes and then increase the force of the bounce.  So far so good.
My blood samples are currently at the lab.  I am having the mitochondrial testing re-done as it has been two and a half years since this was last done.  I'm hoping to see some improvement but also hope it will be useful to re-evaluate my supplement regime.  I'm very nervous about this as I know how I'm going to feel if they don't show some sort of improvement.  To be honest, they couldn't get much worse than last time, but even if they are static I would be disappointed after all the things I have tried and protocols I have put in place.  Last night I was reading about research into low level persistent viruses and ME.  I'm not sure whether it's a good thing to read these articles or not, on the one hand it's always great to read about research taking place and all the bio-chemical markers they are looking at, but the article also went on to talk about the fact that it can take 20 years from this point to treatment.
I have a referral to see Dr Annice Mukherjee at the Salford Royal Hospital and am just waiting for an appointment to come through.
This week I had a Perrin treatment and was feeling good going in, I was feeling on the up again and my body dealt with the treatment well, but since then I again feel like I'm fighting off another sort of bug or infection and have taken another step backwards.  It doesn't help that this has been the first week back into our usual routine and already I am feeling the effects, it had been wonderful having Ant at home over Christmas, besides anything else, another pair of hands makes a big difference.  This week however it was right back into it and I don't feel like I coped very well.

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?

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.

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.

Moving in the right direction

Finally feel like I've turned a corner, feeling much better today, a bit more back to my normal self and I've done a bit of driving and socialising today and coped well,which has been good.  Not sure how much of that I can put down to yesterdays Perrin treatment - I certainly slept well after it which is unusual, I normally sleep worse the night after a treatment, or, whether it's that my body has  just had the time that it needed.
Here's today's WEGO question:

Write about how being a patient or caregiver has changed you. How have your goals changed? Have your values changed?

I dislike the word "patient", but it's quite pertinent really, you can't rush recovery, you have to be "patient" and this is something that I have had to learn.  This whole situation has made me much more reflective and that's not a bad thing providing I am using that reflection positively to help me move forward.  
 It's made me take seriously what I feed into my body and how I fuel it, and realise how important it is to nourish yourself physically and emotionally.  As a busy parent it is easy to put everyone else's needs first, but it is critical to look after our own needs.  This illness has taught me how much I took good health for granted AND how I have to take responsibility for my own wellbeing.
It has curbed my activity enormously and created lots of frustration, but it has also slowed my life and my activity, this creates more time to enjoy and be mindful of what's going on around me.   More snuggly movie afternoons on the sofa with my son, more evenings at home with the family.
I don't think my values have changed, but my goals are now so much more immediate, it's about achieving small steps forward and maintaining them, building on the little steps  until they accumulate into something bigger, that one big goal of recovery.

Perrin Technique gives me some focus

Today is ten days post the relapse that I had last week.  I do feel a bit more chipper today, but still no where near to my baseline "normal". I haven't done anything I haven't had to for those 10 days.  Still,  I had to cancel a trip out last night and a day out I had planned for today! I've cancelled a trip out I was going to take my son to on Friday and I've cancelled some mitochondrial blood tests I was going to have done on Thursday.  It's a case of battening down the hatches and sitting this one it until it turns around.  I am trying to look after myself and nourish my way back.

Today I had a Perrin technique appointment.   As well as the treatment itself, these appointments are always useful in terms of discussing what's been going on and also plotting some action points going forward.  This time I am to focus on diaphragmatic breathing.

Thanks to Sue from  Learning to live with CFS for bringing to my  attention the WEGO Health 30 days, 30 posts challenge.  As part of American National health Blog Post Month they have issued 30 topic headings (one for each day) for health bloggers to use throughout November.  Anyway as things on my blog have been a little negative for this last week or so I thought this little challenge might be a good distraction.  I'm joining in a little late, but here goes with today's topic:

Name 3 songs that you can listen to that get you out of a low point or lift your spirits.

1) Elgars cello concerto - I've loved this piece since I was a teenager, it's my all time favourite piece of classical music.

2) Yer So Bad - Tom Petty

3) My Rollercoaster - kimya dawson