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.

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.

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.

On the up...falteringly

So things are feeling much better.  I feel I could even be back to my pre-summer self.  That said, I'm not really doing anything to test or push myself at the moment so lets say, that at baseline levels of activity I am feeling good.
I often know when I'm feeling better because my brain can focus more easily.  Today for example I set to tasks without any procrastination, made some calls I needed to make and got them out of the way and get this...I even shopped around for a better energy deal, something I have needed to do for months, but that my brain just didn't want to set itself to.  This then is a good sign.

What a difference a night makes.  The first two paragraphs of this entry were typed last night after two very good days, this morning I have woken feeling weary and drained.  It was an effort to do my Perrin massage this morning, only the fact that I know how important it has been forced me to push on and do it.  I feel like i could just sit on the sofa all day today and do nothing.
I have an intermittent feeling that I am not doing as much as I could towards my own recovery.  The dichotomy is that when you're feeling bad it's hard to spend the time you need to on these things, though you want to, but when you're feeling better you are busy actually doing other things you want and need to do and you don't feel the need to concentrate on recovery so much.  WRONG this is when I should be focusing my energies on doing the things I need to do.  I am going to make myself a daily checklist of all the things I should be doing so that I can tick them off every day.  It is a pretty long list now.  Even thinking about what should be on that list is a bit wearing let alone actually doing them all.  Where has yesterdays energy gone?

Update on the Dr Terry Wahls "Minding my Mitochondria" diet - I am struggling with this, the part I am struggling with is not what I should be eating - I'm pretty good at that, its the sheer VOLUME of what I need to be eating that I am struggling with.  I need to read more that she has written and see if i can get more insight into how she actually manages to fit the volumes of greens into her daily meals.  So I guess you could say I'm doing the Minding your mitochondria diet "Lite" and hope to step up to the full on "Pro" version at some point.

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?

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.

Feeling good

Monday
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.
Friday
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.