Wednesday, 13 November 2013

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.

Tuesday, 12 November 2013

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

Sunday, 10 November 2013

Longer than normal recovery

My last blog post finished quite positively - I'd had a bad day Sunday but then felt better Monday, but as the day went on I started to feel worse and by Tuesday I was back in bed again.  This has been my worst week probably in the last two years.  I haven't done anything all week, poor Ant has been out at work during the day and doing everything at home when he gets back.  I've felt very weak.  My thighs just don't seem to have any power.  This is the first week I can remember for a long time where I've actually had to ask friends for help.  I hate the thought of having to do that, but people often offer and this week I needed the help.
 I managed to get an appointment with my cranial osteopath for yesterday and Ant drove me down there (it's about 50 minutes away by car).  My diaphragm and sacrum had locked up and he supects that my body had been feeling stressed for a while.  The result of the treatment meant another afternoon in bed when we got home.  When I awoke this morning, I had slept well and my body felt calmer, but still weak.  I didn't make it down to the cenotaph in the village this morning, something we normally all do as a family.  So, it's been another quiet day of recovery today and I hope that tomorrow will be the start of a better, stronger, week.

Monday, 4 November 2013

Swings in energy levels

A very busy week last week topped off with a late night party on Saturday finally got the better of me.  I spent the whole of yesterday in bed, with a brief interlude to come downstairs and eat dinner with the family in the evening.
I felt so bad when I woke yesterday, muscles so weak and no energy.  My heart was racing and I just wanted to lie flat.  Ant could tell straight away that it wasn't going to be a good day, it quickly becomes obvious.
Last night however I had the best night's sleep I've had for ages and have woken feeling pretty fine (certainly compared to yesterday).  My mind is clear and I want to achieve today.  I know I must rein these feelings in, but it seems so ridiculous that how well I feel can swing so dramatically in such a short period of time.  I am grateful of it when it swings this way of course!  So, another quiet day around the house just to be cautious, but at least I feel human again.

Friday, 1 November 2013

Dr Myhill Update

It's been over two years since I've had an appointment with Dr Myhill, so having recently had some up to date blood tests done by my Gastro doctor I thought it might be a good time to have another chat.  I sent the results and some of my more recent correspondence from my heart and gastro doctors up to her office and yesterday we spent half an hour on the phone talking through them.
Dr Myhill's first comments were about the fact that she thinks my thyroid is underactive as my TSH levels are borderline high.  This is important because if the thyroid is underactive then the mitochondria cannot work fast enough.  The thyroid also controls the number of mitochondria, so it might be that the mitochondria are working properly but there might not be enough of them.  The idea is that if you can improve how the thyroid is working it will give energy production a boost.  There is however a problem with treating the underactive thyroid as the medication normally raises heart rate - something I could do without.  So, it would have to be given in very small doses.  It's not an issue yet, as before you can treat the thyroid, the mitochondria need to be working properly in terms of how they are converting energy,  if that's not happenning then there is no point boosting the thyroid.
We talked about the POT syndrome.  Dr Myhill thinks it would be better not to take the Ivabradine.  This drug will just treat the symptom, but not do anything to help alleviate the cause.  She is sure my heart is beating too quickly because it is not beating strongly enough (due to mitochondrial malfunction) and therefore it has too beat more frequently to do the same job.  Once the mitochondria are repaired, it should return to normal.
We had an interesting discussion about exercise.  I have been feeling very pleased with myself when I have had enough energy to go for a swim at the hydrotherapy pool, but Dr Myhill says it's not a good idea - I'm just wearing myself out - and it's not the right sort of exercise.  The sort of exercise that will help is very short bursts of raised heart rate, so 60-90 seconds of 160 bpm for example, but she also thinks my body is not quite ready for that just yet.  So, swimming might not be the best for me at the moment, but it does give me some sort of psychological boost, because my body feels like it's actually doing something and I like that - even if it is just wearing me out, I might still do it.
Going back to the blood tests, there were a few other things of note.  My C-reactive protein (CRP) was high.  The CRP level is a marker of inflammation in your system.  I did have a bit of an infection around the time the blood was taken and this may have been the cause of the raised levels, but Dr Myhill thinks it would be a good idea to have it retested.
My Creatinine levels were low.  Low creatinine can relate to low muscle mass, which I guess is hardly surprising after 4 years of no real exercise other than day to day activity.
I also had high levels of  Eosinophils, these are produced to fight off allergic reactions or parasitic infections, so when the feacal elastase test that I'm waiting for is done she has suggested that I ask to make sure its also being checked for parasitic infection.  Lovely.  I'm also definitely going to have some sort of food testing done too although I'm not quite sure where or how yet.  Dr Myhill has suggested a RAST Test.
On a positive, my vitamin B12 levels are high which is really good for energy production, so it looks like supplementation of that is working well and all the readings for my kidneys and liver were normal.
We also talked about Perrin technique and I told her that i thought it was the single thing that had made most difference for me in terms of how well I feel on a day to day basis.  Dr Myhills view is that on working on the lymphatic system, Perrin technique is helping to clear away all the debris created from the cell damage taking place and that that is making me feel better.  It sounded like she thought, although it's helping, it is not going to ever get to the root of the problem.  As it is helping, I will continue to use it.
So, I think that was everything, she has written to my GP and Heart consultant and I am going to go ahead and have my mitochondria retested.  I am very nervous about that, I will be very disappointed if there has been no improvement in the last three years since my previous test.  Hopefully, all the supplementation, treatments and sensible activity levels since then will have helped to improve the way energy is being created within my cells.  I hope so.